I haven't used it but many on the boards have...you can do a search on the medications thread and find many references to this med.  It is said to help with many ADHD symptoms....pretty much all of them except it isn't as effective on the focusing so is better for the child who is mainly hyper, or it is used to augment the stimulant meds when focus is needed, but more help is needed with calming, aggression,anger,frustration, etc.

I am asking my doctor about adding this med to my son's stimulant at my next doctor visit...

My daughter is currently on guanfacine (Tenex) and Concerta. She was on each med separately during the summer and the start of school. By itself the guanfacine is effective for hyperactivity, defiance, sleep issues and impulsivity. It was not enough by itself for school focus (but we did not take the dose up very far either). Concerta alone was not quite enough by itself and could not be increased due to weight issues. THe combination (2mg guanfacine AM and PM and 27mg concerta AM) is great for my daughter. Before meds,she had Ds and Fs in school, 4hours to do 1/2 hour worth of homework, was reading at 2 years below grade level, had full angry rages, depression and anxiety. This year on meds, a positive reinforcement behavior plan and some accomodations at school, she gets As and Bs, has homework done before I get home form work, reads at grade level and is happy and fun.

Shire has reported good results with thier long acting form of guanfacine and have submitted data to the FDA to get approval to market it for ADHD:

http://www.boston.com/business/healthcare/articles/2006/11/1 7/shire_guanfacine_shows_adhd_improvement/

cr12345mr,

I know what you mean about being skeptical to start; with the med not being approved for ADHD. The doctor and I did a lot of talking and I did a lot of my own research on this med be for giving it a try. I too am glad it is part of my daughter's treatment.

I feel like Tenex might be right for my ADHD dd (mainly hyperactive) but we have been to two child pyschiatrists who did not want to put her on it. She does well on stimulant alone when the stimulant is in her system, it's the unmedicated times that are hard. Maybe they were both reluctant b/c the stimulants really are effective for her. It's just such a pain when they wear off.

For those whose kids are on it, what type of dr. prescribed it? Also, does anyone have success with tenex alone?

Thanks, Jo

Hi Jo,

My daughter's doctor is a child psychiatrist. He put my daughter on guanfacine (Tenex) because he was reluctant to increase the concerta due to weight issues. My daughter was on guanfacine alone when school started and it was better than unmedicated but not enough. The combo of guanfacine 24/7 and concerta in the AM is great for my daughter. The doctor also likes the use of guanfacine when the concerta is out of the system for improved social and home interactions. It really helps with hyperactivity and impulsivity.

On thanksgiving evening, my daughter started fighting (getting irritated and mean over very little things-like an overly tired 2 year old) with her sister and cousin so I gave her the evening guanfacine dose early and within 1/2 hour, my daughter was playing happily with the other girls.

Good luck with the Tenex. I am glad the doctor is listening to you and that you have a sister to help get information. It may take some time to see improvement with this med, so be patient.

http://www.uspharmacist.com/oldformat.asp?url=newlook/files/ drug/acf2fd1.cfm&pub_id=8&article_id=113

Vickie

I just wanted to thank you for all of your info on guanfacine.  With your help and help from a few others whose brains and experience I have picked, I feel very well informed for my upcoming appointment with Chase's doctor.  I am hopeful that she will be willing to give Chase a trial of guanfacine to see if it will help him to cope better in his daily life.

I have printed off many of the links that you have sited, and will be taking them with me to the appointment to share with her in case she is uncertain....did I read somewhere that this drug does not seem to affect the blood pressure in a child as it does in an adult?  I am thinking that this will be her main concern if any...I would like to be armed with a response for that comment if possible...

Thanks again..

I have read that if you slowly increase the guanfacine, the blood pressure for kids does not change by much. A large dose increase of decrease could be an issue. You could always get a blood pressure monitor with a pediatric cuff just to be sure. This one has a comment on minimal blood pressure changes:

http://www.peacehealth.org/kbase/topic/detail/drug/hw164961/ detail.htm

For those whose kids are on tenex, did your child have to have EKG before starting Tenex? And are they monitoring with EKG's? That is what my dd's dr. said was necessary. Also, do you have to give consistently as to avoid a spike in BP? Her psychiatrist explained that since stimulants can cause a slight increase in BP and tenex can cause a slight decrease in BP they can theoretically work against each other. The "supposed" risk is that there could be a spike in BP as tenex wears off and a stimulant is present. I am questioning if there really is a risk and was wondering if your drs discussed. As I have said, Tenex seems like a good option for my dd.

I second the thanks to Vickie for all the helpful info on guanfacine. Maybe my dd can try it soon.

Also, how long when you start tenex before seeing results?

Thanks!!!

But if he has been on a stimulant for a time with no spikes in BP, why would adding the Tenex cause any problems?  The BP would just go back to the way it was on the stim, before the Tenex was introduced...also in my case, we are going to have to go off of the concerta due to it costing too much, and I do not think that there is a generic that will last as long anyhow...so there won't still be stim in his system when the Tenex wears off anyhow probably...

I hope we don't have to do tons of expensive tests....our wallet won't take it!!

I will let you know after the dr appt on Monday...

I read and my dd's psychiatrist said that anytime you take guanfacine (with or without stimulants) you have to taper off the meds very gradually b/c there can be a spike in BP if you go off too fast. Adding a stimulant to the mix "seems" to increase this risk. So he said you don't want to miss a dose of the tenex. He did say I think it is safe but it does need to be monitored.

I am just trying to figure out if this is just a theoretical risk and he is being super cautious. He did say that when Shire's long acting guanfacine is approved they will probably have better data however it still isn't being studied in combination with stimulants.

It can be so stressful and confusing to start a new drug or drug combo and it really helps to hear others' experiences. Thanks a million!!!!!

It is really tough to decide on medication, and really helps with a good doctor for guidance.

My daughter had an EKG before starting any meds because of the risks of stimulants with an underlying heart disorder. She will be continue to be monitored every year.

Some of the things I learned about guanfacine from the doctor and reading package inserts and clinical studies:

In a small study, the combo of guanfacine and methylphenidate was more effective than either alone.

The half life (the number of hours when 1/2 of the med is out of the system) for guanfacine is 12-18 hours in adults so for blood pressure control, it is taken 2x/day.

The effect on hyperactivity, impulsivity, etc. is about 6-8 hours.

Clonidine is thought to be riskier than guanfacine when mixed with stimulants. Clonidine is more sedating.

You increase or decrease the total daily dose by 1/2mg. This means you go up slowly or need to taper the dose down, with changes every couple of days with no sudden stops or starts. A sudden stop in med can cause a rebound spike in blood pressure is some people. Use it at night in the begining until the sedating effects pass, then try other times of the day.

By increasing the med slowly, the bp change for kids is minimal and not significant statistically.

The Shire study used daily doses of 2, 3 and 4mg, and the new med will come in doses from 1-4mg. They increased and decreased the dose by 1mg/day each week.

Hope some of this helps.

The studies that I found were on methylphenidate meds with clonidine or guanfacine. When I looked up prescribing stratagies for adhd, these 2 meds are suggested to augment stims (general, not specific to one type). The heart precautions are due to some heart issues in 4 people on clonidine and methylphenidate; which were later thought to be due to underlying heart problems, not the meds themselves. Precautions and appropriate monitoring are warrented for most adhd meds to make sure there is no underlying heart disorder. Also, some adhd meds should be monitored by testing liver enzymes becuase that is the major metabolic pathway for metabolizim of most meds.

http://www.askdrjones.com/search/tenex

Vickie

I liked that article on guanfacine as well...printed it off to take to the dr tomorrow.  Adderall is one of the meds that has a generic....not the XR version unfortunately.  I had been a little leery of it from all of the posts here on how it has made children more moody and aggressive, but feel a little better now after reading that..

Chasesmom-I know I posted this before but my ADHD dd who is almost 9 has tryed several stimulants and adderall was by far the best for her. If you decide to try it maybe it will be better than the concerta and he won't even need tenex. Good luck at your dr's appointment!

OK I am back from the doctor, and here is what she did for Chase...she knew of a patient assistance program for Chase for Ritalin LA, which does not last as long as Concerta, but is still ritalin based so should work and last the school day...I will need to give him more for homework...but that is fine. 

She also listened to him and I, and read the reports from his teachers and the bus driver, and prescribed the guanfacine.  She is not so sure it will help him as much as mothers on this board and all of the literature that I printed claimed, but said it will help with his anger, aggression and sleeping, which has gotten kind of bad lately...he doesn't really stay up, or get up...but he is not getting restful sleep, and often looks really tired...the principal even commented on it to me a week or so ago.  So, I will give that to him tonight and for the next few days only at night, then on Christmas break, begin the morning dose. I know that the effects aren't immediate, so I will keep you posted on the results in the future.

His weight is back up to 55, from the 52 he got down to before the periactin, so that is good, and his appetite is as good as it ever was so she was pleased.

She is not sure that it will help with his frustration, and tearfulness, but I really think that these stem from his anger getting him so beside himself, that he gets overwhelmed and tearful.  If we can control the anger, I think the rest will resolve itself...at least I hope so.

You could always consult your dr and back off the dose to the 1mg for a few days and see if he goes back to doing better.  It would be a good test.  I have also heard that it takes a while after a dosage change to see results...

Mary B , just out of curiosity is your son taking tenex by itself or is he taking it with a stimulant? 

chasemom, I sure hope this new combo works for chase and I am glad that you got the ritalin LA.  Let us know how the tenex works. 

Although the med is in the system for a long time (half life is 12-18 hours in adults), the effect on hyperactivity, impulsivity, etc. is about 6-8 hours and I do not know the length of time it might help for other things.

When is your son getting the 1 mg (or 1.5 when increased)? It may be that you need to spread it out for maximum positive effect without the side effects. You might discus the options with the doctor.

Chase just started on Monday...we are in this together I guess..

He just seems more tired in the mornings, and had a pain in his upper stomach yesterday, but he has had stomach pain before that is unexplained, so don't know if I can attribute it to the new med...

The doc said he may be tired/groggy for a few days...

I really think he is just tired still from it..that is one of the reasons he is taking it, to sleep better...I am just going to go slowly upping it a little at a time till we reach his target dose.  The doctor pretty much just wanted me to give him the whole amount all at once...but I have seen on these boards and in my research that the drug is usually titrated up a little at a time, to give the body time to adjust gradually to the med, so I know it is safe to do so.  It won't be the first time I didn't totally go with doctor's orders...they are not God...and all of the other research points to the gradual method of introducing it.  We will have all of Christmas break to accomplish it.

He had no pain this morning and did not have trouble waking up, just moved sloooowly to get ready, which is not that abnormal..LOL...if he had gotten the pain at school, they most definately would have called me...they are aware he is starting new meds..and have always called me before to see what to do if he was feeling badly.

For my daughter, it took about 2 weeks. I am not sure if it was because we hit the right dose at this time or if it took this long to work (or because initially we only gave it at night). We started at 0.5mg at night and increased every 3-4 days by 0.5mg. When we got to 1.5mg at night, we moved 0.5mg to the am (0.5am and 1.0pm). Then we increased the am dose to 1mg; then started working on an after school dose until she was taking 1mg 3x/day. When school started, this dose was good for behavior (hyperactivity, impulsivity and defiance) but not good for attention (she is also dyslexic to add to the difficulties), and we added concerta (she had been on a trial part of the summer).

I liked the results, and then she got a social life. Because homework was done quickly and she could even do it with distractions, I let her go to friend's houses for homework, so the after school dose was a problem. We then split that dose between am and pm (1.5mg each time). The doctor wanted to go up to 4mg to see if we could increase weight so I added 0.5 at night, and then am for a final dose of 2mg am and 2mg pm. We now have the option of a half mg after school when she has a particularly challenging evening planned (party or other posibility of over excitement).

You might get a blood pressue monitor with a pediatric cuff and check the bp several times a day to see if there is a bp change.

I hope this helps.

OK, I have an update.  I took DD off Ritalin LA for the Christmas break.  She is only doing Tenex in the morning and afternoon.  She has been doing just great!  She's not a perfect child by any means, but she is calm and less volatile generally.  No having to deal with rebound, etc.  Get this--we did a 12-hour drive without the Gameboy.  We were playing movies--but no Gameboy is a first!

Anyway, yesterday I gave her 10 mg short-acting as we were going to paint pottery.  I thought it would help her focus.  Sure enough, she was focused, all right, but she was doing the weird behaviors such as being preoccupied with playing with her hair instead of getting into painting her pottery.  I'm starting to think we should try going without the Ritalin during school.

P.S.  DH started taking short-acting Ritalin to deal with his ADHD-inattentive.  This is good because he can experience close to what dd is experiencing meds-wise.  Now he knows what rebound feels like.  So far he feels it does help his focus.  He takes 5 mg every 3-4 hours.  Killed his appetite.

How long was your daughter on the tenex before you took the stim break?  Chase got up too late 2 days in a row to take the Concerta...if he takes it after 10 AM he has trouble sleeping, and on the first day, he fell asleep for 2 hours in the afternoon, and the 2nd day, he was VERY dizzy until I finally gave him one half of a 10mg ritalin tablet...that counteracted the dizziness, but he dragged all day, and fell asleep in the car on our errands...hasn't done that since he was 4.  Then the next morning, he was still very tired and dizzy and a little nausea until we gave the Concerta and it kicked in.

I would love to use just the tenex (guanfacine) in the summer, but now I wonder if the dizziness will be an issue.  Perhaps we just need to lower the dose of guanfacine when he has no stimulant?  Or maybe he is just not used to the guanfacine yet...he has only been on full dose for less than a week.

Hi Chasesmom79,

We have been skipping the concerta for the holiday break (just returned from my parent's house in another state today) with good results (I know this won't work for school though). What dose of concerta does Chase take? Would it be posible to use a low dose of concerta for a week and then go to none? I am thinking, he might be having the same symptoms as some adults do when stopping coffee.

Hopefully you can get the results you are looking for.

chasesmom79,

I really hope Chase continues to do well on his treatment. It will be interesting to see if he changes the type of child he prefers to play with. My daughter seems to prefer more normal playmates rather than the hyper/irritating ones she used to like.

It is also nice to hear that he is sleeping better. A well rested child can deal with so much more than a tired one.

My daughter does so much better with her peers when the guanfacine is on board. Since she is on 4mg a day, if she has a busy afternoon planned with friends, I sometimes have her split her am dose to take 1mg in the morning and 1mg in the afternoon for better coverage. The doctor has given us a lot of leeway on how to use the guanfacine, as long as the daily dose is the same (+ or - 0.5mg) and we do not exceed 3mg at any one time (most likely because we see such positive effects and no side effects).

Good luck getting the ritalin LA assistance. It is so hard when you know what to do but have all these limits. I had the hardest time finding a child psychiatrist in our health plan that was taking new patients.

Wow, thanks for posting this link in goinnutz's thread ~ I had not heard of this yet but it sounds like something that might really benefit my son.  Focus isn't his issue ~ he makes straight A's and if anything it's his hyperfocus that causes problems (i.e. he's not finished with an assignement and the teacher asks him to move on and he refuses because he's not done and can't switch gears that fast).  Our primary concern has always been the aggression, hyperactivity, tantrums and outbursts. 

Since it takes a week to work, I wonder if it would be wise to keep him on Concerta for seven days while the tenex builds up and then pull him off Concerta ~ he's only been on concerta for a month ~

Thanks again, I'm off to research :)

These are all things to discuss with your doctor.  I wish that Chase could do the guanfacine alone!  I have been able to give him only the guanfacine on the weekends for the past 2 weekends.  I would have tried the weekend before that, but he refused saying "I don't want to take the guanfacine w/o the ritalin!"  I think he was scared to be that dizzy again, so the next weekend, I offered to give him a short acting ritalin...only 1/2 of a 10 mg, with the morning dose, and that did the trick.  He saw that he was not dizzy and so that is what we do now. It is most likely all in his head now, but no harm... The ritalin wears off in a couple hours, and he eats all weekend. 

I think his attitude is just as good w/o the ritalin, but I know he needs the ritalin for focus at school...though he forgot to go to the office on Friday to get it, so all he got was a 5mg dose of short acting in the AM....On Fridays, he has early band, and the ritalin LA would not last all day, so he gets it at 9:00 on his way from band to homeroom....or he is supposed to! 

During the school day, they had inside recess, and a fight broke out when there was no adult supervision between 2 other boys, and Chase and another boy kind of mediated...with Chase calming the upset angry boy by reminding him to count to 10, to think of something else, etc (he HAS been listening tome all this time!!), and then talking to the other boy asking him why he stole whatever from the victim...then they related the story to the aide when she came in the room to check up on the class. So, on only the guanfacine, he was able to keep his cool and do that.  I was impressed!

He did not come home with markedly more homework on Friday, but I am sure that would not last if we cut off the stim....

My daughter was on concerta and guanfacine together, and we are now trying the guanfacine alone. It has only been a week and a half with things going well. I will keep an eye on her in case we need to add the concerta back to the treatment. She takes 2mg am and 2mg before bed with a 1/2mg dose on days with a busy social schedule after school.

This med is worth discussing with the doctor. If it works, you can always watch to add a stim if needed as your son grows and goes through changes in life.

The guanfacine works more mostly on hyperactivity, impulsivity, calming and defiance, with less effect on focus (newer date says it works on focus as well). It is a blood pressure med and you have to start really low, and work your way up slowly, then not skip days. We have seen no side effects and after 3.5 weeks is still also doing well at school. Others have sees side effects so as with all things you have to approach it cautiously. There are several threads on this med and I have posted links to many articles for education purposes on this thread.

In the link below I described the mode the doctor had us start and increase the med to an effective dose. I have seen people have side effects when starting the med in the am or at the full expected dose.

http://www.adhdnews.com/forum/forum_posts.asp?TID=25609& PN=2

I hope this helps.

bumped for geesmom...

Hey bounced,

Glad to hear the tenex is helpful. It really makes a difference for my youngest as well.

Our doctor just prescibed Tenex for my son, who is on Adderall XR 10 mg.  Lately he has been all over the place, quite impulsive, tempermental (mainly stubborn, but to the nth degree) and whiney.  I am reluctant to give it to him, since I am leery of giving him 2 meds, and the RX says to give it to him 3 times a day, morning, afternoon and at bedtime.  With our lifestyle, there is no way that will happen.  Actually, all of this took place at the last appointment which my DH took him to and came home with too little information.  We have an appointment tomorrow morning, and this thread has been quite helpful.  My question is, has your child been on a med, then added Tenex, then went off the other med and is doing fine on Tenex?  And why the 3 times a day?  To keep it regulated in his system?  So would before school, after school work?  Or will he need it mid school day?  I will ask all of this tomorrow, just thought I would ask here first.  I am soooooo glad I found this board!!

Alyson and Noah - 6 years, ADHD, Adderall XR

Emma Kate - 3 years

I don't have to give the tenex (guanfacine) in the afternoon, though I sometimes think that it would help Chase if he had a dose then.  I believe that it is for the calming effect, and the fact that it helps with social and frustration things, as well as easing the hyperactivity.  I have read that parents see a benefit of the afternoon dose. 

I haven't given Chase the guanfacine alone yet, though I plan to do so for the summer.  I will perhaps let Chase start the school year not medicated to see if we can possibly go with a lower dose of stim, though that will depend upon what Chase wants, the doctor wants, and my feeling on how the summer has gone....Chase does not have hyperactivity, only focussing issues.  If he was primarily hyperactive, I would be tempted to try the tenex alone.....

My youngest takes guanfacine (tenex) 2mg in the AM and 2mg at night, with the option of 1/2mg for demanding social activities (we rarely give this dose). Things to help you understand the dosing: the 1/2 life (how long for 1/2 to leave the body) of the med is 12-18 hours, but the effective time for ADHD symptoms appears to be 6-8 hours.

There are studies showing the combo of guanfacine and stimulants is better for ADHD symptoms than either med alone. This is one combo worth trying out. Just take the ramp up to the proper dose cautiously to reduce/avoid side effects.

You might ask the doc if you can try it AM and PM at first, and see if that is enough for now. It is important with this med to be giving the same amount every day (within a tolerance) and if the doc knows the afternoon dose is iffy, he/she may have you skip it at least until you see effects of the med. You have to work the med up slowly and should start with the night dose for a few days to watch out for sedation and let your son's body adjust.

We recently tried guanfacine alone due to weight issues with the concerta; and over the last 6 weeks, the ADHD symptoms started increasing, but not to the level of prior to med treatment. So it helps my daughter for behavior, impulsivity and hyperactivity but now enough for focus at school. We just added focalin in hopes of getting the great results we had on the concerta/guanfacine combo, but without the lack of weight gain.

Later this year, Shire's long acting version of guanfacine should be on the market. So even if it is a struggle now to use the short acting form, if it works, there is the long acting form coming to make dosing easier.

The good thing is that you have confirmed the need for the med. It is alot harder if you are second guessing whether the meds really help or if the child just became more mature with time. I think a summer break is good, as another check.

You might want to start ogram's marble system (top thread of the parent's board) and see what progress that gets you as well. We had definite progress in behavior with this system and then meds took us the rest of the way. On days without meds, the behavior plan has residual positive effects.

We have to do daily rewards for my 5 year old...he could never wait a whole week and/or remember what he was working towards.  If he gets O's & S's on his daily preschool report (outstandings/satisfactories), he gets a time in.  It can be any one on one activity with either Mom or Dad, his choice.  He loves our moon sand time ins.  He loves boggle jr.  He loves watching spiderman.  Normally, time ins are 15 minutes, but can be longer if its a movie or something.  If he gets N's (needs work), it means he was somehow disruptive for the day..so no earned time in from school, but he can earn it by behaving well at home.  We try to be positive and cheer him on for whatever good he did at home even if he had a trying day at school. 

Our son never cared for sticker rewards or the building ones...he needs immediate satisfaction to understand/comprehend what he is working for.  If he had to wait that long, he wouldn't remember why/how he earned it.  Hopefully, that will change as he ages.

Hi,

I'm new to this board.  I was reading some info on Tenex on another board and this site was reccomended in the discussion.  I have read through this thread and found some good info.  Thanks.

Briefly, my 10 yr old ds is ADHD combo and takes 45 mg of Concerta at this time. He has doing ok at school on Concerta although we still have some issues with math and writing.  He has issues with hyperactivity, impulsiveness and over focusing on things that bother him mostly in the summer when off the meds or when the meds are no longer working well.  We are beginning to see these signs more lately but do not want to increase the stims again this near the end of school.  I will not go into great detail but I have been dreading summer.  There are just more issues with other kids and neighbors in the summer and usually at least one impulsive act that results in personal injury or injury to property.  He is usually a good kid on his meds  but is imature....more like an 8 or 9 year old in some areas.

I have been encouraged by reading about the results some have had with Tenex.  I would love to be able to decrease the stims over the next few weeks then take him completely off for at least 3-4 weeks before school starts back.  He needs to gain weight mainly and he is usually able to start back on a lower dose of Concerta after being off for a while.  Our ped. doc who manages ds ADHD has never prescribed tenex.  He has a few kids that take it that he continues to prescribe for but they were already on it when they transferred to him.  He is open minded and not opposed to prescribing but needs some guidelines for doing so.  I have read what has been posted.  I see that some people started with 1/4 mg and others with 1/2 mg.  it appeasrs that most started  the doses in the evening.  Correct?  Is it easy enough to break the pills into 1/4 pieces?  If we started at 1/4 at night what would be the next progression and how would we know when to make it?  I have been experimenting with meds for the last 3 years so I have no problem breaking pills, etc. and the doc gives me a little room to do so.  I just need to know what to tell him as far as how we will start and progress.  Also, when could we add an afternoon dose if needed?  Any very specific info you might have would be appreciated, especially regarding whether to start with 1/4 or 1/2 nd the guidelines for progression.

Thanks so much.

Hi!  I think that I may be the one that recommended you to come here?

Vickie is very knowledgeable on the dosing schedule....but I think the key is to ramp it up slowly over time....starting at 1/2 mg should be fine if I remember right, your son is about my son's size.....

The way I did it with Chase was 1/2 mg at night only for 3-4 days, then I added 1/2 mg in the morninig (continuing the evening dose) for 3-4 days.  In another 3-4 days, I added 1/2 mg to the evening dose (1mg total for evening now), and continued the morning 1/2 mg.  In another 3-4 days increase the morning dose to 1mg...and so on until you get to the dose you want.....

Chase was tired the first 10 days or so, but we were fortunate to be able to start the med on Christmas break, so it was not an issue...I would try to start it on a weekend at least if possible.  Also, he is a bit more tired on the weekends when he has no stim, but if he is busy, he is fine....if he is lazing around watching TV, he will doze off for a little nap......sometimes.  The ped says that will ease once he is stim free for longer in the summer and his body adjusts.

Chase is on 1mg in the morning and 2mg at bedtime, but I am considering giving 1/2 mg in the afternoon (3-4 oclock) to see if it could make late afternoon/evening a bit more peaceful...hafta ask the doctor about it.

I am encouraged by your comment that your son is able to start on a lower dose of stim in the fall after a break, that is what I am hoping for as well.

Welcome to the board and I hope that I helped at least a little.

I don't think that the tenex comes in liquid though it is a tiny little pill, and can be crushed if need be and added to something...

It is easily broken in half too to answer TLC's other question...

Just a few things to add on the dosing schedule...if there is daytime drowsiness that does not clear up in a few days, reduce the daytime dose and increase it slower (1/4mg increments). Guanfacine has a 12-18 hour half-life (the amount of time for the blood level to reduce by 1/2) and a 6-8 hour effective time for ADHD symptoms. My youngest gets a dose of 1/2mg in the afternoon if a challenging social schedule is planned for the evening (mostly holidays when relatives are over in mass).

The big thing is to not suddenly discontinue this med, as it has the potential for rebound hypertension.

Thanks.  Couldn't remember everyone's screen name and was too busy typing to look it up.  lol  I get focused sometimes, too.   I am going to call the doc back tomorrow re:Tenex.  I feel we should start slow since the doc is unfamiliar with it.  I'm no doc even though I research everything.  We only have this week and 2 days next wek of school left, so it won't be a problem if he is a bit sleepy.

As for going off the stims in the summer.  My ds was on 45 mg at the end of school last year and all through June.  He took off the next 6 weeks and I had to drop back to 18 mgs when school started back.  Then we increased to 36 mgs for most of the year.  We just recently went up to 45 mg.  I'm hoping this will happen again for us.

Thanks for the info.

My son is on the tenex alone and he is more calm and less impulsive but he has been sleepwalking and talking nonscence when he sleepwalks.  he has been doing this the whole time he has been on the Tenex. We had to cut his dose down fron 1/2mg am and 1/2 mg 2pm to only a quarter 2wice a day. Then slowly we are 1/4mg adjusting back up. He was very sleepy and dizzy and had headaches at first then we backed down to the 1/4mg 2 xs a day and the headaches and dizzyness went away.The sleepiness decressed also.  He is still sleep walking so we will address this with the Psyc. on thursday.

I think the key is to start out low and build up slowly. My ds always seemes to get the worst side effects from any med! The slower you go the less the side effects seem to be.

The pills ae hard to cut by hand! We tried it and wasted a few! had to run to the drug store and get a pill cutter. It was worth the five dollars! The halfing them was ok. But to quarter them was much harder! With the pill cutter it was much eaiser.

Now he is only on 1/2 mg in the am and a 1/4 at 6pm I moved it back to see if the sleeping might get better. The ped okayed it! Seemes to help sometimes! When we went up to the 1/2 pill am he was sleepy for two days then that went away! We are waiting for the next apt with the psyc. to do anything else.  He has been on the Tenex for about a month.

Hope this helps! Oh to add it has helped with his appitite too. He is more hungry! I let you know if we add any weight! he is only 54lbs and 8years old almost 9. Skinny guy!

One trick to cutting these pills is...

Lay a credit card on a flat surface. Place the pill so that 1/2 of it is on the card and 1/2 is off the edge of the card. Place your index fingers, one on each 1/2 of the pill and press down. The pill will break over the edge of the credit card without crumbling.

we have had good success with a pill cutter also, but that credit card trick sounds good!

It works really well, I tried the last time I saw it on the board....I think vickie posted it one other time....

I think it is helping Chase to gain as well.  He is also on the periactin for appetite, and was slowly putting weight on a pound or two a month.  Since the guanfacine, he has gained much more rapidly...he is now up to 64 pounds as of yesterday morning....

That makes about 12 pounds since November....8 of them since the addition of the guanfacine at Christmas break.

He is still slender, but not quite so anorexic looking!

Thanks for all your comments.  I do understand the weight  concerns.  LAst year ds was 9.5 yrs old and was 53 pounds, 53 inches.  I was very concerned...doc wasn't.  He is now almost 11 and weighs 63 pounds at 54 inches.  We gained over the summer and lost very little this year, thankfully.  If he put on some weight, that would be awesome.

I'm more concerend with the sedating affect of this med.  I know if he is sedated more than a day or two, hubby will pull the plug on Tenex.  He hates when meds zonk son and has little patience with that.  I hope to start just giving at night for a few days, then see how that goes and make more decisions.

Chase never acted 'sedated', just a bit more tired than usual....he fell asleep in the car one afternoon, took a nap some afternoons....I ramped up quite slowly and started at night only as well.

It is individual though....some have been more affected than others in the sleepiness department.

[QUOTE=aus10]does tenex come in a liquid form I'm hoping? if so how does it taste?[/QUOTE]

My pharmacist said that they make guanfacine into a liquid for one family.  You also can crush it and take it in powder form.  I thought we'd need to do one of those two options, but the .5 mg (1/2 tablet) is so small that my 7 year old did fine with swallowing it.  I bought the EZYDose pill cup (has a spot where you put the pill and then drink normally, and pill is supposed to slide down throat).  CVS and other places sell it.  This special pill-taking cup gave him the confidence to be able to do it (we'd tried Concerta nearly a year ago, but he couldn't swallow the pill).  After using the special cup two times, he now takes the pill with a regular glass.  We give him the incentive of taking it with a special drink he likes.

Ds was a little to sleepy in the begining so we just dropped the dose down. I would definetly let the dr. know how your husband feels about the  Zonned out affects. i would tell the dr. that you want to start at night and slowly.  This would definetly decress the chances of being to sleepy or zooned out!

I also remeber ds looking zonned the first few days but after we cut back he was fine! I wish we would have started slower than 1/2 mg twice a day!  That would have been alot better on ds!

When ds first started tacking meds regularly I had him practice on smaller things like sprinkles and smarties and tic tacs. Then he could swallow the meds no problem. When we started the fish oil pills they were hudge! I told him that a five year old could swallow them (he was 8) and that did the trick! LOL Some times just the right motavation is all they need! LOL

I was so happy when ds DECIDED that he could swallow pills late in third grade.  We had been very limited because he was afraid of pills.  We would practice with jello and tic tacs but then on the real deal, he'd panic.  Now life is great.  He no longer has to take yucky meds for anything and is very happy now.  He finds it kinda funny now at almost 11 that his sister (who is the age he was when diagnosed--2nd grade) can't/won't swallow pills.  I do think alot of it is mind over matter.

I was lucky with Chase.  Jake, the big brother, took zyrtec pills (tiny) for allergies and when Chase was dx with the same at age 5, he announced to the ped that he wanted pills like Jake, not liquid when she asked him.  She asked me if he could swallow pills, and I told her not that I knew of, so she went and got a sample of the zyrtec, and some water, and he popped it in his mouth and down it went!

He has taken 500mg amoxicillan (huge), fish oil capsules, you name it, he can swallow it. He was a bit nervous when he saw the fish oil pills, so we put it on a big spoon of pudding the first few times, then after that, he was fine.

I would never have known about this either if not for this board and the parents here.  I am really all for the sharing of info and experiences! 

Hope it works out for your son as well as it has for Chase!

What kind of doctor prescribes tenex for you or your children? I really thought my dd's pyschiatrist was going to let us give tenex a try over the summer b/c we all feel she needs a break from the adderall and she is extremely hyper and impulsive without it. When we went in at the end of May to make a plan for the summer he said he really didn't want to use tenex with her. He said it is a very serious drug and that he only uses it in "extreme" cases as in major defiant behavior or Tourette's. I just don't get it. He treats TONS of ADHD patients and is very familiar with tenex. Everytime I ask anybody for a referral for a good child pyschiatrist I always get his name!!! Honestly, I think she would really benefit from adding it to her stimulant as well as using it over the summer alone.  I think he will let her try it after the XR version is approved for kids with ADHD but I am tired of waiting. I am wondering if a pediatric neurologist would be good at prescribing for ADHD. I found a good practice out of a great children's hospital here but don't have any firsthand knowledge of the doctors in the practice. I'd love any advice.

Thanks so much for all the great information!

Well, my ds' doctor officially thinks I'm crazy, but he is goijg to let us try it.  However, he is very skeptical and will only agree, so far, to 1/2 mg at night for a week or so then 1/2 in the morning.  We will have to talk more after that point.  He doesn't know anything about the drug, doesn't think he knows any peds that would prescribe it, has never heard of teh drug being used in kids for any reason, and soon and so forth.  He doesn't have a clue why I'd want to give it to him or why it would need to be given at night or why more than once a day.  Even after all my research, I couldn't really answer his questions.  Shouldn't he be answering mine anyway?   I think the only reason he allowed it is because he does have two other kids taking it.  I should have aksed who their previous doctor had been.  MAybe he could have checked with that doctor. 

We will start the 1/2 mg at night tomorrow.  Wish us luck.  He made me nervous about it when it sounds like it has worked for alot of kids to some degree.

If you have any more thoughts, feel free to let me know.

He has another day of baseball camp so we will start when it is over in case it plays with his blood presure or makes him sleepy.  I don't want him out in teh heat with a new med on board having some kind of problem.

I have printed all the articles that have been referenced on this site.  I also have a book on hold at the library that talks about the use of antihypertensives in the treatment of ADHD.  If nothing else, I can show that it is considered by some to be a treatment for ADHD and I didn't just make it up.  lol  I can also show what things they conisder it to help with.  Nothing talks about dosing but we are going to start slow.  He has 5 weeks until he goes to summer camp for a week.  I have to get it to a point that we can continue without me being there and feel fairly secure that everything will be fine. 

I would like to decrease his Concerta some ( if my poor nerves can take it).  Should I go ahead and drop back some before he starts the Tenex or wait till the end of June as we had planned and drop back some then?  He is taking 45 mg now plus more frequent boosters of 10mg reg. release Ritalin lately.  By more frequently I mean in stead of once-twice a week for baseball games is taking a booster almost every evening.  If he gets up too early, there have been some days where he had special things planned with friends that he has taken two boosters.  This is very unusual for him but the days are longer and the meds are not working as well as before AND his life is less structured with summer and all.  I'm just not sure whether to go ahead and start cutting him back some or wait till we see how teh Tenex does WITH the Concerta.  Any thoughts?  I have 18's and 27's that I could use without having to get new prescriptions.

I would change one thing at a time. Start with a night dose to let him get used to the med for a couple days, and then add a day dose(s). I kept increasing the night dose prior to the day dose until we got to the current 2mg AM and 2mg night with a 1/2 booster after school when needed. Go slow like others have said to reduce or avoid side effects. 

Well, we finally got the pills and he took teh first 1/4 pill tonight.  I decided starting slower was better.  I guess I will give him 1/4 tomorrow night and if all is well go ahead and try teh 1/2 the following day.  My fingers are crossed.

I had the same amazing effects from it in the begining but it seems he is needing more now that it has been a few months. The Dr. wanted to try provigil with the tenex so we are now on day four and things are diffrent.  Ds sleep walks evert time we adjust the Tenex! Weird!

Just make sure you watch carefully for any changes over time!

Not sure yet if the provigil is helping, but can keep you posted on the combo! He seems a little more aditated but that seems to be lessinig as the days go by! He is at a quarter of a pill in the am with 1/2 tenex then 1/2 tenex at noon (or when I remember) Yesterdays noon dose was late becouse we did not get home right after chruch.

The Psyciatrist that DS sees suggested it along with strattera and welfairin. We chose to try the Provigil first and after the last two days I am convinced that he is behaving worse. Very crabby and snappy and mood swings! So done with that! I have to wait to see what the next move is now! Back to square one! AHHHHHHH!He is being very nasty to his brother and sister which is not acceptable. Crabby crummy attitude. Yuck!

oh no, that's not good.

Dont you just hate this trial and error stuff

Well, tonight will be our 4th night of taking 1/2 tablet of tenex at night.  I guess tomorrow we will add 1/2 in the morning.  So far we really have not seen a change...not even drowsiness.  He has been up later than usual the last two nights unable to sleep.  I hope we see some improvement.

It can take a couple of weeks to see the full effects of Tenex. 

My ds responded similarly.  For the first 5-7 days (I forget), he had a harder time falling asleep (discontinued melatonin when started Tenex).  Then, he started falling asleep just like he's supposed to.  Same with the behavior.  We didn't see a difference for at least a week, but then it seemed to kick in and made a big difference.  He's now on 1 mg in the morning and 1 mg an hour before the stimulant wears off.  We now actually have hyperactivity and impulsivity control at night after the stimulant wears off!  DH and I were saying last night that it's amazing that we're actually living like normal families now!    The one issue we're still having is overnight awakenings.  He's only been on the medicine for 5 weeks, and he's been at an evening dose of 1 mg for only three weeks, so we're still hoping this'll disappear.

Thanks.  I won't give up hope if some of you saw benefits late.  Part of it may also be that we are not on a very structured schedule right now with school out so the meds are not given at exactly the same time each day.  I have been trying to make sure that there are the same number of hours between the morning and evening pills but our schedule changes.  For instance, last night he had a birthday sleep over and we went to a double feature at the drive-in.  We got home at 2 am.  That's not normal but he and his friends had a blast.  Hopefully, we can stay on a better schedule and see better results.

Talk to the doc about increasing the tenex. My daughter is on 2mg AM and 2mg PM with no issues. The doc said that we would end up between 2 and 6mg/day. He wanted to increase until the weight started to increase and the hyperactivity was under control. My youngest went from 63 to 72 lbs on the guanfacine and focalin. We have since added risperdal for anxiety and the weight is now 76 lbs (it has the side effect of weight gain). This is needed for an 11 year old who is developing and near puberty.

The long acting form shire is trying to get approval on, was found effective at 2 to 4 mg/day.

Just information for refference.

She now weights 76 lbs. When we started the guanfacine, she weighed 63lbs. She is 11 and still wears size 6 pants (that are about a foot too short ). She was thin before stimulants and we did not have much leeway for weight loss.

We used Clonidine first, made my daughter tired. When we switched to Guanfacine, we used only that. We do not have sleep issues however. Your doctor is right that the Guanfacine will not be as sedating as the Clonidine, but three different meds it not fun...........................

I'm interested in trying Tenex for my 8 yr old son.  He's been taking Metadate CD 10mg, but has been off for the summer.  We have been trying a few alternative meds with not much success. 

When he's on his med, he eats breakfast and supper.  He goes outside and playes for a little while and comes in complaining that he's tired.  He sometimes complaines that his stomach hurts.

Since he's been off this summer he has gained weight.  I don't know how much but you can tell.  He's going outside then coming in to cool off (we're in South GA) then he goes back out.  He's eating a big breakfast, lunch and supper and usually a snack in the afternoon.

I'm thinking about not putting him back on when school starts.  I know it helps him to focus and pay attention, but I'm wondering if it's worth the side effects.  He went for an 8 yr ckup in March and weighed 47 lbs. We're limited to what he can take, because he can't swallow pills. 

Any suggestions?  How do I get my pediatrician to let us try Tenex, I haven't asked yet?

Thanks.

Try printing some of the data and bringing it with you to the doctors appointement.

Has he tried other meds besides Metadate? It may just be that med, they all affect everyone differently. The Tenex may not really help with focus.

Shire just received an approvable letter from the FDA for the extended release guanfacine. They need to supply some more info and come to agreement with the FDA on labelling (label, advertisement, package insert).

http://biz.yahoo.com/prnews/070621/ukth002.html?.v=101

 Does tenex come in patch form?

Tara

Is daytrona similar to tenex or is it a stimulant?

Thanks,

tara

 Regarding the sleep walking issues you described exactlly what we had gone through in the begining with the Tenex. I was getting worried cause he was doing the light on and tring to leave the house a few times. Thank God the chain was on. Now I only notice the sleepwalking if we are incressing the dose. In the begining he was also doing the glassy eyed crazy talk. That all stopped when he got used to the dose and the med. He will did this for a about a week. Now he is on Concerta (low dose) and I have not incressed the Tenex yet! He is not hungry for lunch so I will be asking the Dr. About incresing it! He is only on 1/2 mg at 8am and 1/2 mg at 12:00 or when I can remember. He seems to get irritable aroun 2pm and then I go crap Forgot the noon dose again!  He is doing great on the Tenex now. Sleeping better and behaving better.

You are not alone and It dose get better they need time to adjust is all! The Med lasts 12hours in there system so maybe its too much to soon? We has to cut back from the 1/2 that we first started with and go down to 1/4 and then back to 1/2. Or just ride it out and put a high chain on the door!

Meli,

It sounds like you are making good progress on your son's treatment. I know it has been a long tough struggle for you. You must be relieved to finally see some success after all that you have tried. Good work for hanging in there for your son.

I'm not sure still about what the right dose of Tenex is for my son or how much it is helping.  I do know that he is up to 69# from 62# in about 3 weeks time.  HE hasn't weighed 70 # since 2nd grade BEFORE stims.  He is 11 and taking 3/4 of 1 mg at night and 1/2 in the morning.  I'm debating what to increase next.  I kinda want to add an afternoon dose and see if we notice any changes with that.  The doctor is really not helping me on this, so I'm just kinda trying to go slow and read what others have done.  He gave me 30 pills and feels like it will be a failed trial.  So I need to use my 30 pills wisely.

I do feel like the mornings are going a bit better.  Even with early mornings last week, he didn't give me trouble or act terribley silly.  I'm not sure if evenings or afternoons are better which is why I'm wondering about an afternoon dose.  Or should I increase the morning dose first?  Any thoughts?  Oh..he is still taking Concerta but I am trying to slowly decrease the amount.  He is on 45 mg now but today I gave only 36.  I hope to get him down to 27mg.  I may not take him completely off unless I see better control with more Tenex.

Hi guys,

I had my son on tenex for 3 months and it was like he was a different person. His teacher siad that he was one of the easiest kids in the class. Two months into the school year it stopped working and his Dr. did not want to increase his dose. It was terribly dissapointing! He took .5 mg 2 times a day. I switched to clonodine and he was tired all the time and he kept falling asleep at school. We got him off the clonodine and it was terrible. He was a loose cannon and he has been so angry. Now he is on strattera which is helping with focus but it is not helping at all with inpulse control. Do you think that adding tenex to the mix again will help? How much can a 50 lb. 8 year old tollerate?

Tara

My daughter takes 2mg AM and 2mg PM. She was 10 and weighed 63lbs when she first started the med. The dose of long acting guanfacine in the Shire study was 2-4mg/day (for comparison).

I would see if the doc will add back the guanfacine.

Shire's status with their long acting guanfacine is at "approvable" and they may be on the market for ADHD by the end of the year. Your doc may be more comfortable prescribing this form of the med, based on the clinical studies and dosing guidelines.

Diane V and others,

No the doctor is really not helping me.  He has never prescribed Tenex and thinks it's all just a mom looking for a miracle where there is not one.  He agreed to precsribe becasue he does have 2 kids that came from another doctor that take it.  He had no idea how to dose so I had to tell him all that I have discovered online, etc.  Last week I took him some articles that I copied for him.  Not sure if he will read or not but at least maybe he will realize that I didn't make all this up.

He wrote me a prescription for 30 pills "1/2 at bedtime".  He is aware, if he listened, that we were going to increase it very slowly.  I told him that many kids were taking it 2-3 times a day in small amounts with good results.  He was willing to let me try but made me feel kinda dumb saying that there was no grounds or evidnce to indicate why anyone would be taking this medicine for ADHD, etc.

I'm not ready to try to change doctors, which I know is what alot of people may think.  He has worked well with us and is willing to listen to me and try new things.  We have never had another doctor THIS flexible so.....  For now, we are sticking with him.

My husband wants to try going up to 3/4 in the am before we consider adding an afternoon dose.  I have been going about a week or more between changes and we have not seen any side effects.  He has also quit sleep walking it seems.  I'm wondering if I could just move the bedtime dose up to cover some more of the evening since it is summer and he stays up later.  Or would that hurt our morning happiness?  lol  I am happy that the morning silliness has decreased.  VEry happy. 

Also, does the weight gain level off at some point?  I mean he can stand to gain some more but.....not 7# every month.

Thanks for all your help.

TLCsmom,

When my youngest clearly needs an early evening dose (easy to tell with her), I will give her the night dose early. The doc has told us to split it up as needed for symptoms, but make sure to get the same amount every day. You would have to try it to see if it affects the AM. Start a tria of giving it 1/2 hour early and see what happens in the morning, you may be able to tell the effective time at this dose for your son by moving it 1/2 hour earlier each day for a few days.

Oh I hear you! Getting one day solid day like that is like Christmas .

Imagine how he must have felt. Being able to enjoy imself, not gettgin in trouble, it's just good for everyone! Here's hoping for more.

Hey Everyone,

Wanted to chime in how things have been going along here. Ds is on the Tenex 1/2 in the am and 1/2 in the afternoon. and 18mg concerta in the am. Well I can tell when the Tenex wears off in the afternoon around 2:00 which is six hours.  He has been getting angry and aggressive with his sister. I am going to ask the Dr. if  I can slowly bump him up to a whole pill in the am and a whole pill at 200. Or what ever works!

I don't want to up the concerta till school if it is needed. I hopr that this will help with the frustration level. I have not noticed and kind off rebound with the concerta and was wondering if Its cause he was already on the Tenex before we started the Concerta? And that the Concerta is only at 18mg?

Any advice would be appreciated!

Well, we have been very happy with the results of Tenex.  We have been at 3/4 in the pm for several weeks and 3/4 in am since July 4th.  He has been so much better in the mornings and I have not havd to give any ritalin boosters except for the day I ran out of Concerta.  Oh....and he has gained 8 pounds!

I'm sad right now, though, because I'm afraid he may have to stop the meds.  He is having what I compare to panic attacks at night lately.  I just picked him up from his best friends house at 5 am.  There was a small thunder storm....nothing like we have been having this summer...and he woke everyone there up and wanted to come home. He told me in the car that his heart was racing and his stomach hurt and all he could think was that he needed to get home.  He said it was the same way he felt when he was 6 or 7 and ran home from a friends in the middle of the night in a panic without telling anyone.  So it has happened before, but not in years until recently.

I may be jumping the gun.  Maybe it was just going to happen.  He has ended up in bed with us or me in bed with him 3 times in the last week or so because he has woke up during the night ( around 2 or 3) couldn't go back to sleep and then paniced I guess.  He has mentioned the heart racing panic on 3 occassions now.  He used to panic if he couldn't go to sleep at night.  In past years, I have spent many evenings working on the computer and allowing him to sleep on the sofa by me so he felt safe then putting him in bed.  Otherwise, he was a wreck that he was still awake in his room alone.  Or I would lay down with him and he'd go to sleep. That had gotten alot better, though over the last year or two.  Sometimes, he would still wake up and knock on our door and we tell him to go lay in his sister's room on the little sofa and he'd be fine. So he has had a history since starting stims of having sleep issues and he has always been the typical kid scared of a storm but it is the element of panic and being out of control that concerns me.  Also that he is 11 and I think should be better able to handle the unexpected storm, etc.

Does anyone have any thoughts?  Could the Tenex have something to do with the panic or could the problem be exacerbated by something else?  I don't see any real signs of puberty yet so I don't think that plays into anything yet.

Should I sign it...Sleepless in Oklahoma??

I would guess it is more likely the Concerta that is increasing his anxiety rather than the tenex. But that is my guess. Are you willing to try him on the Tenex alone? Although have mentioned issues with sleepwalking and night waking on Tenex.

We had to stop stimulants because of the increased anxiety, but no panic attacks, she has more GAD.

I guess I just don't understand why NOW the stims would cause this when he has been on some form or the other for 3-4 years. I guess to me, the Tenex is what is new so why would it not be the culprit.  He has no anxiety during the day.  Well, I should say that any day time anxiety improves with Concerta.  You may be right, I just don't get it.

To answer your question, I'm not sure about going off the Concerta.  Things dramatically improve for him with the Concerta.  We cut back from 45 mg - 36 mg already and one day he only had 27 because we ran out of the other pills.  He did not make it well on the 27mg.  He had a melt down about 4 pm ( had taken it at 10am).  HE got very very angry at a friend.  Told him to go home and when the friend didn't leave was prepared to MAKE him leave.  Then continued to act terribly bitter toward sister and her friend.  I tried to help him calm himself but I could see it was escalating.  He resisted taking a booster.  He ended up sobbing, miserabley with me trying so hard not to be mad at him for the way he was treating everyone.  He finally took the booster because we had to go to an egagement we had promised to attend and he said he was going to make " a fool of myself".  Within 30 mins my sweet, lovebale, mature 11 yr old was back.  I think he was relieved but wouldn't admit it.  That I said, I try very hard to help him learn from situations and learn to manage his feelings better, etc. but I know the difference from a situation that will improve with time and guidance one that is going to get much worse and is caused by his meds being messed up.  I have to say that I am very afraid of how things will be off the meds.  I remember before meds and I know how hard it was the last two summers without them.  He has friends now because of the help Concerta has provided.  On Concerta he will maybe introduce himself to someone.  Without it, he watches from a distance.  With it, he passes his classes in school with some struggling, has much greater control over his anger and emotions and seldom has a pitty party like he used to.  Oh...and the hyperness and impulsivity is much less.

That said, how do I take him off?  Even if we could go Tenex alone, which I'm not sure, how about school?  I'm just asking retorically because I know you don't have all the asnwers.  EVen if I was convinced the Tenex would be enough, I know the dosage would have to be increased and getting the doctor on board would be interesting.  Right now the problem is that we are leaving on Thursday to go visit family for 3 weeks.  He will have 1 week at summer camp, then we are going to the lake with my family for a few days then about a week just at their house and visiting some other relatives.  When we get back, we have 4 days till school starts back.

I don't need to change anything that could ruin camp for him.  I'm already a bit concerned that he will wake up one night and want to come home.  I'm not sure how to handle that, either.  I can't just go get him if that happens.  My parents will put up with him off the meds, they have done so the last two summers, but it's not a great time for anyone and he gets in trouble more mainly becasue he never knows when to stop.  If that makes sense.  I guess I just don't see how we can change much right now.  If you have suggestions or ideas, I'm all ears, but just know it makes me nervous.  ;-)

Thanks.

My son was on tenex for 6 months and he told me that he would wake up a lot in the middle of the night. I never knew that it was a side effect of the meds. Interesting...

Tara

I cut it back to 1/2 mg am and the same at night.  I'm hoping maybe that will help.  I really am enjoying easier mornings and smoother days.  It has been interesting feeling like I'm getting to see the more "normal" issues of childhood and work on them.  I know that sounds strange but maybe you understand.  I feel like it's all a trade off.  So far I haven't seen the perfect life...for anyone.  If he can live with the occassional night wakening and learn not to panic, I'm willing to help him get through it.  He was pretty freaked out this morning, though.  We talked calmly afterwards and tried to come up with ways to get past it.  I don't know all the answers but.....we will see.  I think we will keep trying it until school starts at least.  Thanks for your replies and I hope I didn't offend anyone.  I'm just trying to reason everything and it's not always logical.

I cut him back to 1/2 in teh morning and 1/2 at nights.  He had a good night last night and a great day.  He had an  anger blow-up tongiht before bed over something relatively minor and ended up yelling and sarcastic then had a pitty party like he used to before meds and then before we got the stims right.  Not sure what to make of that.  It has always worried me when he loses control and yells at me ( out of character mostly) or starts feeling really sorry for himself.  It has been over a year...maybe more....since he got like this.  It has been taking him less than 5 mins to get a grip when something didn't go his way.  We got past that, though, and he calmed down and went to sleep even though he didn't think he could.

  Now...at 3 am, he is up.  (His sister just got to sleep at 1 or so after she calmed down from witnessing his earlier tirade.)  So he slept about 3 hours.  He asked to come in our room and got in bed with me.  But that didn't help him.  HE said, "Mom, my heart is racing and beating so hard.  I'm scared."  His heart rate was about 96 bpm, so not really all that high.  If over 100 considered high.  Second time I took it only 88 but he still felt it was "beating too hard". I snuggled him and told him his heart rate was ok, etc. but he started crying and saying how scared he was and wanted to call dad at work.  Very unusual.  Now about 30 mins later, he seems a bit calmer and is watching tv as a distraction.  I think he is afraid to go to sleep.  He does not remember a bad dream.  I just don't know what to do.  It's so hard to see him like this but he has done so well during the day...has been so wonderful and I can't imagine going back.  This is where not having a doctor that knows anything about the Tenex is a problem.   I was planning to work back up to the 3/4 but now I don't know what to do.  We leave for our visit with my family on Thursday and will be gone for 3 weeks, the first week of which will be church camp.  I have no idea what they will do if he has this problem there.  My gut tells me it is just anxiety ( for whatever reason) causes him to feel like his heart is beating too hard, but I don't know.  Any thoughts?  Gosh.  I feel like having a panic attack just thinking about going back to horrible mornings and hyper  evenings and impulse control issues. 

That is what I was thinking.  I was trying to think of what to tell my son to do when he has one but not sure what to tell him.  I really think he is having them now because he expects it to happen if he wakes up.  If that makes any sense.  He has always hated being awake if someone else was not.  Didn't have this strong response before, though.  Well, maybe once or twice in his life, I guess, when he was younger and on dexedrine ( not a great fit for him).  I told him this morning that waking up at night is normal....that alot of people wake up every night at some point.  The difference is they don't worry about it or panic, they have ways to go back to sleep or to cope if they can't.  I told him next time he wakes up, to feel free to turn on a light ( although he seldom sleeps in darkness) and read his book for a while or draw in his art pad.  He says none of that will help if his heart is pounding.  Just trying to make it seem like not such a big deal so maybe he will not stress over it.  I just wonder if the pounding heart is what is waking him up or if he gets it after he wakes. (He was reading over my shoulder and says...yes, the pounding heart is what wakes him up.)  Why a panic attack in your sleep if not a horrible dream?  I don't get it.

I don't think the doctor will be of any help.  He didn't know how to prescribe it or why anyone would want to.  I have since found so many articles about Tenex and ADHD.  None of which talk about panic attacks.  I think tachycardia was mentioned in one but, technically, his heart rate was not that high.  It talks more about slow heart rates with Tenex.  One doctor says he has a 70% success rate with Tenex and stims and that it helps many of my sons symptoms.  I guess I'm just having a hard time understanding why the panic attacks when everything else is great.  I feel like the dr. will just have us quit using the Tenex.

I wonder if changing the times i give the Tenex would help anything. Or if giving  a bit more in the morning and less at night or something. He is becoming afraid to take it at all but I kow we can't just stop.  I don't want to lose his trust, either. So thought we might try changing the times before we gnive up totally.  Any thoughts on this.  He has been taking equal doses at 10 am and 10 pm just becasue our summer schedule is more relaxed and he has been up later and sleeping in some.

Thanks for your ideas.  I really appreciate it.

Thanks for your ideas. 

 MAry, that might work.  lol  He has been taking Melatonin but we are going to stop it for a while in case maybe it and the Tenex don't agree or something.  Tenex doesn't make him sleepy so I had let him go back to Melatonin.  Now not sure.

The Atarax sounds interesting.  I have been reading about it. I wouldn't have thought of an antihistamine for anxiety.  One thing I wanted to ask, though, was....Does your son have problems getting up in the morning if he takes the Atarax during the night? I wouldn't want him to take it before bed every night, becasue I know he would start to rely on it.  I wouldn't mind him seeing that it would help him get through nights then have it handy in case he had another panic attack.  Just wondering if he were to take it at 2:30 or 3 in the morning ( the time of most panic attacks so far) if he would be able to get up by 7:30 for school?  I guess if he had another panic attack at 5 am like teh other day, he'd just have to stay up and deal. 

He is prone to miled anxiety at night but nothing like this usually happens. It would be nice not to feel helpless.  Not sure teh doctor would be onboard but just thinking on it.

Ok.  I need some sleep.  Can you tell me how to go about taking him off the Tenex?  I know we are not supposed to stop all at once, but I need to know how to go about backing out of it.  I would appreciate any info.

He isn't having panic attacks every night anymore, but the child is pretty much up all night.  Not exactly awake, though.  last night, for example, he finally went to sleep at midnightt after very little sleep the night before and an active day.  At 1am he was awake and knocking on my door.  I put him back in bed and tucked him in. HE seemed to be asleep. At 1:30 or so he was back but not really all that awake.  He was sweaty feeling so I turned on his fan and put him back to bed.  I went back to sleep only to be awakened yet again around 2:30.  I was so tired I just let him crawl back in bed with me.  However, he still didn't sleep well.  He tossed and turned all night and sat up and said things that made no sense.  ANd, hubby will be home tonight.  Not room for an 11 yr old in bed. 

Night before last, he was up till midnight.  Went to sleep and came in my room at 1:30 where he apparently slept till 5 am then got up.  At 6 I woke up with  a start realizing he was gone.  He was wide awake and said he'd already watched two 30 min shows.

I'm not sure how much longer I can try this med.  Seems to be getting worse.  We have had little sleep Thursday, Fri, Sat, Sun and now Monday nights and there were two panic attacks in teh week before that.  I'm open to any other thoughts, but this pattern does not seem promising.  I don't get it but....I guess if we stop the medicine and he starts sleeping again, I will have to assume the Tenex caused the problems.  It really stinks but the lack of sleep is undoing all the good benefits.  Like now....we have to leave in 15 mins and i cannot get ds to wake up.  He is so tired now.

Thanks for your help.

One other question:  Does Clonidine have the same possibility for side effects that Tenex does?  I'm thinking since they are similar they would but just wondering if people see the sleep wlking and night wakening on Clonidine?

I feel like I had just a glimpse of what life could be like and it was awesome.  I'm feeling it is being ripped away, though.  I know that sounds overly dramatic but, I'm operating on very little sleep and that's how it seems to me.  It won't ever be ok going back to previous status quo after seeing how great things COULD be.

Tenex can be weaned by reducing by 1/2mg every 4-7 days. Check with the doc first.

Clonidine is more sedating than Tenex and can help with sleep better. Both seem to work on the dopamine receptors of the brain.

TLCsmom,

I had the same weird sleep issues so I never went above the 1/2 pill at once and he has stopped the sleep walking and weird talk! What dosage are you up to? How long has he been on it? Is he taking anything else? 

It seemed to take two-Three weeks for the sleep walking and weird talking to stop! I also have noticed the closer to bed it is given the more he would wake up! So The latest he gets it is 230pm. And if his cooncerta is keeping him up I give him a quarter of a pill to help him fall asleep. So far no sleep walking with the 1/4 of a pill!

Just thought Id share!

BL,

We did the tenex first  alone then decided that it was not enough. Excpecally with the scary sleep walking issues and the trying to leave the house in the middle of the night! Our past bad exsperiences with the stimmulants and the fact that the concerta stopped working after 6 weeks the first time we used it I have a feeling we are actuall running into the same problems again! Not eating durring the day and losing weigh(but not offical till we see doc next week) So we are upping the concerta to see if there is a diffrence if not we are done with it if things get worse! I would love to find something that actually works!  We went back to the concerta cause when it was working it was great! Except the minor sleep and weight /eating issues!  I would love to do just the Tenex but don't think that its really realistic eighter!

funny thing is he was in a really good mood this morning untill the mmeds kicked in! Not a good sign! Hopefully just a coincidence.

Thanks, meli.  It does make me feel a tad better somehow to know this is not totally unusual and