I’m new and really need advice! :( | ADHD Information
karen, my son also a Joseph and the same age has taken a variety of different meds....he is currently taking Adderall..he took strattera and while it did work for a while, it made him moody, grumpy and not fun to be around...
My Joseph did learn to swallow pills using the little sprinkles and jimmies that you put on cakes
SmallMom: Thanks for your kind words. I apologize, I was probably overreacting last night. Yesterday was just brutal and I was very emotional already when I read your post... you know how everything seems worse at night. This morning while I don't exactly feel happier about the situation, I am going to talk to Joseph's doctor at least today so I can *do* something about it... over the weekend I felt so helpless. I didn't even bother trying the pill this morning. BTW, the weird thing is that Joseph swallowed his Adderall fine, and his Tenex fine, and the first 3 days of Strattera he was nervous but eventually was swallowing it in 5 minutes. Then on Saturday we had this huge reversal and resistance and then yesterday, panic. I don't know what changed. So, he can swallow pills, just not this one. I'm afraid to push this one any further because I worry he'll generalize it to all pills. Sometimes I have to forcefully remind myself that 6 years old is still very young and I have to make sure my expectations are realistic, you know what I mean?Joemom: I read some reports last night of kids getting grouchy on the Strattera like your son. My Joseph is of a generally sunny disposition so if he gets that way we will spot it right away... I really hope he doesn't though. It seems like people either have a hugely positive or hugely negative experience with this medication. Don't you wish that if our children had to have ADHD, they could have been born later, when they will know how to treat it or even eliminate it? Say 100 years from now? I think about what we can do now compared to 100 years ago and it makes me wistful thinking about what they will be able to do someday that I wish we could have access to *now*. Oh well, if wishes were horses.
Thanks for the posts everyone... if anyone else has advice I am grateful!!!!!! I'm so glad to have found this board!!!!!!
Off to leave another message at the doctor updating the situation.
Karen
Karen, sounds like a plan. Your son's pdoc sounds very responsive. I hope things work out for your son.
If you want more feedback on Strattera, you might want to start a new post with "Strattera" in the subject line. That might get your more responses on that issue.
I know frequent poster Lillian's son has been on Tenex for hyperactivity for some time and has responded favorably. You might want to PM her if you want more info on Tenex.
Good luck!
Karen:
First I want to say that if I was in your situation with the issues you describe with your son and 2 year old TRIPLETS, I would likely be off my rocker. You should be granted sainthood for maintaining some semblance of sanity at all!
Also, it's nice to have someone here whose posts are longer than mine... hehe
I'm glad to hear that the doc ok'd the opening up of the Strattera. My son is 12 and only dx'd last year (ADD inattentive, so none of the hyper element). We went thru hell trying to find the right meds, and our problem was compounded by the fact that no matter what we tried, he could not swallow pills. Still can't. He wants to, they just won't go down. It defies the laws of nature, honestly. So I totally feel your pain.
According to our doc, many of the possible meds simply cannot be crushed or taken any other way than swallowing ... so that ruled out a ton for us. Then of the remaining possibilities, he had nasty side effects. It was such a totally frustrating time for us, and of course it coincided perfectly with the sudden decline and death of my MIL, just to make the stress levels thru the roof. We ended up not giving him anything at all. Luckily for us, 6 months later Adderall XR came back on the market here in Canada (it had been the first one he tried, which worked, but then they pulled it off the shelves here much to our dismay). That's been working for us since.
Also, in the process of trying the different meds (it's all a blur which ones were which now)... I snuck one of them into some kind of food that I can't recall ... and my son figured it out and had an absolute fit. I would never sneak meds on him again ... mind you at 12 he's old enough to see and appreciate the benefits of the medicine, so it's not an issue.
It is nice to hear that perhaps there are actually some options for "compounding" that might work.
Best of luck in getting thru this rocky phase - it sounds like you're on the right track and have a responsive doctor - that's half the battle.
PB
Another update! I'm sure you're all getting tired of me. ;>
I talked to Joseph's doctor just a few minutes ago... I was happy that she called back so fast on a Monday morning (she told me once that she gets 20-30 calls a night).
She gave me the go-ahead to open the Strattera and put it in food, if Joseph doesn't seem to mind the taste. So I will continue doing that and hope that this will be the medicine that works.
If it doesn't, or if he starts showing mood symptoms (my apologies to SmallMom: you were right that Strattera can bring out moods, and I was wrong) then our backup plan is to go back to the Tenex at a slightly higher dosage as she says that rebound from going off of it would be over by now, so obviously it was helping with the hyperactivity; and then to augment it with a smaller dosage of a stimulant than he was taking before, to help the inattention.
So I have a plan in place again. I don't think I'm going to tell him yet that he's eating Strattera in pudding; I'm going to watch and wait, especially on Wednesday when we go to 2 pills (20mg). Once he's been taking it successfully for at least a week I will probably tell him; I think it's about 95% that he'll be fine with it and a slim chance that he will start refusing pudding, in which case he'll start eating a lot of ice cream. ;)
It's hard to switch from meltdown to hope like the flick of a switch; I was up half the night thinking about this and now I'm trying to get back to normal so that I can take care of the triplets (Joseph is at school). Mondays are a very long day for us here so I need to get it together before my husband leaves for work.
Thanks to everyone who posted. I would stilll love to hear anymore Strattera stories, good or bad... is there anyone else who is opening them?
Karen
[QUOTE=OlderMom]What sort of professional diagnosed him? Was he seen by a NeuroPsych or plain therapist?[/QUOTE]
He was seen by a neuropsychologist, it was 3 days of testing of about 4 hours each day. They must have good patience! This was at Massachusetts General Hospital. The diagnosis was given by a team consisting of a neuropsychologist, an intern, a neuropsychiatrist, a child psychiatrist, and a person whose title I forget who specializes in childhood testing. They also consulted with his teachers and had them fill out lot of evaluation forms, and my husband and I did as well. The pediatrician was also called for her viewpoint, although I don't think hers was as relevant as she only sees him for checkup and ear infections.
So I am confident that he has been diagnosed properly. I know that there is a huge concern out there that too many pediatricians or regular therapists are diagnosing without following the full procedures and evaluations, but we did the whole extensive process.
I hope this answers your question? Let me know if not.
Thanks,
Karen
Karen, sorry I had to run off. My 13-year-old son had a worsening of tics on Adderall so I certainly understand why you stopped it. We stopped it, too.
BTW, Tenex is known to be sedating, and it is helpful for hyperactivity and impulsivity. It does nothing for inattention, which is why it didn't target that symptom in your son. My son takes Clonidine (Tenex's cousin) only at night to help him sleep.
But I'm really confused about the Strattera -- why would your pdoc (psychiatrist) go to Strattera when you are watching for mood disorders and one of the major side effects of Strattera is mood swings? Because my son now has a dx of BP (after a manic reaction to the SSRI Zoloft, prescribed for anxiety), I would never in a million years give him Strattera. It is almost as bad as SSRIs at inducing mania in kids with bipolar disorder. So why would you agree to Strattera when you are watching for mood disorders?
What sort of professional diagnosed him? Was he seen by a NeuroPsych or plain therapist?Hello,
I am so glad I found this forum. I was searching and searching the net for some solution to the problem we are having and stumbled across a post from this board from about 2 years ago; I've looked in vain for a good ADHD board since my son was diagnosed but haven't found one, so I'm so happy to be here.
My son Joseph is 6 (turned 6 last January) and is finishing up kindergarten. I'm sure his story is familiar to most of you; he is extremely smart, gifted IQ, always ahead as a child i.e. reading at 3, etc... but I always knew something was wrong from about age 1.5. He couldn't make friends or keep them at preschool, and it was there that we began to recognize the hyperactivity and inattentiveness and extreme distractibility for what it was. Since he was our first, we thought that was just how kids were; it wasn't until around age 4-4.5 that we began to realize that he really was different and wasn't "just a boy" or that it wasn't a case of "I worry way too much". You know all the comments you get from friends and "friends" and relatives and complete strangers when you start the whole ADD thing.
Anyhow, he started kindergarten and I was called after 3 days by the teachers to say that they really recommended formal evaluation. This is a private school, BTW, I sent him there because it is a very caring, loving environment that is appropriate for kids who are bright, a little "different" or eclectic, and most of all because they don't tolerate any kind of bullying, teasing, or exclusion; I find the public school attitude of "kids will be kids" horrifying and I knew that he would be eaten alive at public school. He has loved his teachers and I know that this is the best place for him.
Joseph went to a clinic at Massachusetts General Hospital and was evaluated over a course of meetings; had the IQ tests, the ADHD tests, the Aspergers... the whole deal. He was diagnosed officially last November with ADHD (all 3 facets; the attention, hyperactive and impulsive). We linked up with a social skills group that he is going to once a week, and got a recommendation for a good psychiatrist. She is very respected and well-known and it is apparently very difficult to be able to get to see her, as she is so booked up; apparently it's only because we went through MGH that we got to see her.
Joseph also is being watched closely for mood disorders. He is a hypersensitive child prone to anxiety, although he doesn't always show it on the outside he obsesses over negative comments or criticisms and will remember them for months and months. Positive he just shrugs off. He also has a family history to contend with; his father is bipolar (under control, treated; he is a wonderful supportive father and husband) and I have a history of mild depression and am naturally anxious and overly sensitive myself. (In fact I am starting to wonder if I might have adult ADHD myself, after reading about it, but that's another post).
Joseph's doctor, Dr. M, started him first on Adderall; she said that this was not her first choice for a child who was 6, usually that was her "3rd line of defense". However we had a situation with his school; as they are a private school they don't have special ed and they were concerned about his ability to handle first grade there as it involves a lot of transitions (to the music room, gym, art building, drama, Spanish, etc.) which is one of the hardest things for him. Kindergarten was all in one room, even lunch, but first grade is more challenging. They definitely wanted him back, they love him and also want him back (they didn't say this but I know) because of his intelligence and high test scores, as this is the kind of school that participates in lots of math and science competitions when the kids get older.
And we wanted him to stay there as well; he was happy there and had friends, as opposed to preschool where he was miserable and an outcast and had no idea why. The school decided to hold a spot for him when it came time to decide (kindergarteners are not automatically accepted into the lower school, they have to be academically bright enough and also not have any behavioral problems that the school feels they can't handle). They held the spot because at that point Joseph hadn't started medication yet and they wanted to give him a chance to see how it worked out. If it showed good results, basically, he was in, and if he didn't, well, probably not.
SO (sorry to be so verbose... just want to get the whole history out there)... Joseph was started on Adderall with the understanding that it was a "quick-fix" designed to show the school that he was properly diagnosed and that we would then have the next 5 months or so before first grade to find him the right medication combination (I thought back then that it was going to be simple... we had a diagnosis, and there was medication for it! End of worrying, right?).
Joseph had no response to 5 mg of Adderall. However at 10 mg he was a different child... I cried the first day because I saw what he could be if he hadn't had ADHD. He was attentive, loving to his brothers and sister (I have 2.5 year old triplets) rather than ignoring them, incredibly calmer... he just seemed so NORMAL.
The doctor was uneasy about the dosage though, she said that most children of his age and weight (he's a big boy... 53 pounds, 4 foot 2) should respond to 2.5-5 mg and that 10mg is quite a lot. She thinks that 6-year-olds' brains are not developed enough to handle Adderall and was also very wary that a mood disorder would emerge.
We had a great 3 weeks. We had a meeting with the kindergarten and first grade teachers and he was officially readmitted. I made it clear that we were going to take him off of the stimulant medication if the doctor felt it was best and try less potent stuff, and that if he backslid that it was to be expected. They were agreeable and have been extremely cooperative, giving me detailed notes on his behavior and moods and feedback about anything they felt I should know about.
Abruptly the adderall seemed to start to fade out. First the hyperactivity started coming back, then the distractibility. Then he suddenly developed a rather alarming facial tic of blinking his eyes constantly. We all decided to take him off of it as it was a) not working and b) having the side effects of the tic plus reducing his appetite greatly.
We then tried Tenex. The tenex did work a little; it calmed him down and reduced his hyperactivity. It didn't do much at all though for his attention which is an equally big problem. It was also extremely sedating. Last week we decided that he should stop it and move to Strattera after a few days of no medication, to clear his system out.
We started the Strattera last Wednesday. Now Joseph had taken Adderall and Tenex with a minimum of fuss; however the Strattera just put him into a panic. He was used to the circle pills, that were small or could be broken in half; this was the (10mg) capsule that couldn't be broken or opened and sprinkled on food. The first day he got it down after an hour. The next 2 days he did it in 5 minutes. I was relieved.
Then yesterday, the day of awfulness that I am still shaking from. We tried everything. He would not/could not swallow it. A couple of times he got as far as putting it on his tongue, even putting milk/juice/whatever we were trying in there with it, but he couldn't/wouldn't swallow it. We tried pudding, applesauce, bribes, juice, chocolate milk... you name it, we tried it. I think it just got to the point where he psychologically could not swallow.
I'm kind of ashamed to say that it finally went down when his father held his mouth open and I pushed it down his throat. He cried and screamed but the second it was down he brightened, cheered and was himself again... he didn't seem to bear any grudge. I was a wreck however after 6 hours of it and went and threw up in the bathroom, cried for a half hour and then had to lie down with an enormous headache; my nerves were shot for the rest of the day and still are, frankly. Joseph acted like it had never happened and came in to comfort *me*, saying he was glad that we did that and that if it was the only way to do it he didn't mind. I said that *I* minded and we were not going to force him ever again because it was his medicine and his decision, his body, and his job to take it. We talked a lot (well, I talked) and I made it clear that I loved him more than he would ever know and that I wanted him healthy and happy but healthy had to come first.
I spent a lot of time last night looking on the net to see if Strattera came in any other form, like a pill, or if there was any other medication that acted like Strattera, i.e. a non-stimulant but not like Tenex; there wasn't. At least that I've found.
Today my husband was downstairs when it was pill time. As soon as he opened the bottle Joseph ran from the room. I have to state that this is a child who is very sweet, normally very polite and obedient, and that this is *extremely* atypical behavior for him. My husband followed him and picked him up, just to get him to come back to the kitchen; Joseph went into some kind of a panic mode, fought and kicked and ended up bashing my husband in the face (right on that bone under the eye) with his head extremely hard and giving him a black eye.
The pill giving ended there. My husband is traumatized, I'm traumatized, and obviously Joseph is. I called the doctor and left a message telling her what was going on (although this was before today's incident). She will call me back tomorrow I expect; I didn't page her, just left a general message.
I feel like I'm going to have a breakdown. On top of everything since discontinuing the Tenex, Joseph's behavior has been very difficult to handle; he is so hyperactive that I can only assume it's rebound from going off of the tenex. She didn't have us wean, just stop it; he was only on it for about 4 weeks, maybe slightly less. He also has become an insomniac which I am also sure is because he got used to the sedating effect of the tenex; he's up until 10 (usually 7), although it's an improvement from the first few days last week when it was midnight.
I don't know what to do. I really want to give the Strattera a fair try because it really seems like the ideal thing to try for him; it doesn't aggravate mood disorders or tics or any of that; because of all of those things the stimulants are apparently risky for Joseph to begin with, and then the Adderall stopped working at a high dosage (I haven't compared dosages with anyone, in fact I don't know anyone else who has an ADHD child, I'm going on what his doctor tells me; she says that 10mg is too much for a 6-year-old).
If you have read all of this I appreciate it; it has helped me just to type all of this out. Right now all of the kids except Joseph are napping, my poor husband and his black eye are asleep on the couch as well. Joseph is "resting" in his room, which means I can hear him talking and singing non-stop to himself. This excessive hyperactivity is making me crazy... I am very patient and don't lose my temper easily but it's been difficult this past week. I was used to what I considered "normal" hyperactivity levels, or regular ADHD, but this is ADHD++++. He can't sit still for a second, he can't listen to one sentence without looking away and singing or talking about something else.... I'm trying to always separate out my Joseph from his ADHD but it's getting so hard. This isn't my child.
But I guess the reason I posted is not for sympathy or empathy, although that would be appreciated!, but to see if anyone else has had a problem with Strattera or any other pill being swallowed. At this point I'm afraid that it's gone from being a physical problem to a psychological problem; he's so terrified of it at some level that he literally can't make himself swallow anything that has the Strattera in it. We know he *can* swallow it because he did, 3 times, by himself. But now he can't anymore, and I think he won't be able to unless he doesn't know he's taking it and I don't know how I could possibly hide it in anything as he would chew into it; it's just too big to slip into honey or yogurt or ice cream and have him not notice. And if he knows it's there, he's not going to be able to swallow it.
HELP me please... I'm sorry to have my first post on this board be a long saga ending in a plea for help but no one seems to know what to do; I haven't talked to his doctor and I'm afraid that she'll say something like "Well you are his mother and you need to make him see the importance of this." He understands it, he just can't do it. If he could have done it, he would have rather than sit on his bed for 6 freaking hours yesterday, missing his swimming which he loves, missing seeing his grandfather, missing going out to eat, turning down all bribes, being unaffected by the possibility of privilege loss.. I shouldn't say unaffected because he would cry occasionally in frustration and I'd hold him and we'd give it a rest for a little while. I stayed patient and loving the whole time, it just ended so badly, even if he says he "didn't mind" that it was essentially forced down his throat... today he said "Mummy, don't be upset, that's the best way to do it!" But the panic that set in when the pill came out today showed me that it's not that simple.
Also, he's supposed to go to 2 pills after 1 week and then 3 a week later. There's just no way.
I really need help. Or advice. Or just "we have been there and...."
Thanks everyone. You seem like a wonderful group from the posts I've read and I look forward to joining your community.
Karen
Karen, I have two kids with working dxes of bipolar (my 13-year-old son's first dx was ADHD and anxiety) so I understand where you're coming from. I don't have a lot of time to write right now -- I will come back on later -- but I did want to tell you to check with a mom-and-pop independent pharmacy. They might be able to "compound" the Strattera capsules into a liquid for you. A chain drug store will not be as helpful in this regard. Call around and see if that's an option. Good luck! I'll write more later.
I have groceries thawing in the kitchen that need to be put away ASAP...but I wanted to let you know I read your story and I want to cry for you and Joseph and what you're going through now...... I'm going to get some chores done and think on this and come back to you.
You're right -- stimulants do bring out tics, anxiety and depression. That's why my son is not on any ADHD meds.
Here's a link to a warning from the FDA about suicidal ideation in children who take Strattera:
http://www.fda.gov/cder/drug/advisory/atomoxetine.htm
I realize that your son does not have bipolar disorder. My youngest daughter doesn't either, but if she had anxiety and needed treatment, there is no way I would give her an SSRI antidepressant, the standard treatment for anxiety. That's because both her older brother and older sister had manic reactions to SSRIs, and there's no way I'd risk it in my third child.
Again, if you're insistent on using Strattera, call an independent pharmacy and ask if they will compound it into a liquid.
SmallMom38837.787337963SmallMom:
Thanks for your thoughts. I'm not sure why you are saying I'm "insistent" on anything; I'm just doing what my son's doctor advised, I have to trust her and she's extremely well-respected.
I was aware of the FDA suicidal warning and the doctor did advise me about that; I researched it and realize that it was put in place because 4 people have committed suicide while on Strattera. However there have been many clinical studies and not one person in the studies has ever committed suicide; but to be on the safe side they had to put the warning there.
But to me it seems a big jump to say that because my son tends towards anxiety he shouldn't take medication that has a very slight chance of promoting suicidal ideation? His anxiety is not severe, he doesn't need treatment for it alone; it's the ADHD that we are trying to treat; the severe distractibility and hyperactivity.
I don't quite understand what you are trying to tell me. ADHD medication is bad?
I have to say, this is making me feel even worse because now I'm supposed to question my doctor and my diagnosis and my parenting abilities?
All I wanted was help about swallowing a pill, and I'm starting to feel attacked. If anyone else has anything to offer I would welcome advice as I don't think I can feel much lower tonight. Does anyone have a child on Strattera that could tell me their experience with it? thanks.
Karen
SmallMom:
Because she told me expressly that Strattera did *not* worsen underlying mood disorders. The reading I've done about it also says that. It says that the stimulants bring out anxiety, depression, etc., but that Strattera doesn't. That's why it was hailed as such a breakthrough, supposedly (along with the fact that it's not a stimulant).
Of course now I can't find where I read it because I didn't bookmark the sites. But it seemed pretty clear that it was the stimulants, not the strattera, that brings out the anxiety/tics.
Also, my son doesn't have bipolar; he's just under a close watch in case he does develop it. At this point he's just a sensitive kid who tends toward anxiety.
I'm all confused. :(
Thanks,
Karen
By the way as an update we tried putting the pill in jello tonight; I made jello jigglers; some squares were plain, some had m and m's, some marshmallow pieces, and one had the pill.
He would not even eat one plain. He flat-out refused. This is atypical for him. He obviously has set his mind against it so firmly that I don't think anything will get him to voluntarily swallow this pill.
After doing a lot of research and talking with a few parents I finally just broke open the pill and mixed it with a pudding. I know that the manufacturer says not to but apparently lots of people do; it's not time-released so it's just a matter of preventing bad taste and gastric upset. He ate a ton of pudding so at least some got in there, and he didn't notice any taste difference (he didn't know it was there).
Tomorrow I'll talk to his doctor and hopefully find out what to do next. I'm so depressed and unhappy... I feel like I am failing as his mother.
Karen
Karen, I'm sorry. I'm not trying to make you feel worse. I happen to frequent another message board (www.conductdisorders.com) where some moms have reported mood swings in their kids who take Strattera. That's all I'm trying to convey to you. I understand you're trying to medicate your son, and it is not easy. Believe me, we tried for 3 years and came up with nothing. We may try Provigil in the fall (it's getting FDA approval for ADHD this summer).
You are doing a great job for your son because you took the very first step and got him a thorough evaluation that led to a dx. You know what you're dealing with. That's half the battle. But the other half can be very hard and take even more time -- putting the proper interventions into place. I hope you find success more quickly than we have.
About swallowing pills: Some kids are very anxious about it, my son included. He thinks he's going to gag or choke. We practiced with mini M&Ms to give him confidence. We made it a game so he would relax. At age 13, believe it or not, he still has trouble with larger pills so we often ask for sprinkle capsules or more smaller pills to make up one larger dosage. I know that's not a possibility for Strattera. I do think a pharmacy might be able to help you out.
I did not mean to come off sounding harsh or unsympathetic. I truly am sorry. I hope you get some answers from your pdoc tomorrow.