I’m losing faith, and my mind. | ADHD Information

He is still impulsive, still hyper but happy .. and responds to prompts much nicer (such as stop jumping on the furniture .. he would say OK and stop) He does his homework when not on meds most nights but i need to stay on him to get it done.  Thats also after being on clonidine all day .. which makes him sleepy and also cranky.  We tried cutting the clonidone down alot which helped for three weeks .. then, we switched him to the focalin XR and things went down hill rapidly and we never recovered back to the way he was before that.  He still was more on the aggressive side before all that but more controllable than now.

 where in PA are you?  I am in the NW corner.

It's not like I have found all of the answers b/c I am still extremely flustered at any given moment, but maybe if you are close I can steer you down a successful road I've travelled before.

 

You're right. If you've tried multiple stimulants with no success, there probably is something more going on.

The speech/social skills problems alone, just like oldermom stated, are red flags for Autism. I didn't notice if she put the link in for Child Brain, but here it is:

www.childbrain.com

If she did, my apologies.

My son is also on the spectrum, and in some ways very similar to oldermom's - he is PDD-NOS. Although he has a mix of other issues (i.e. Bipolar/ADHD).

The neuropsych is an excellent idea. If nothing else, a 2nd opinion from a board certified psychiatrist (not psychologist) would be good, as well.

I live in central PA (Gettysburg area), and have a few resources if you'd like them. Just PM me.

 

Janna

janna38848.4391203704

My son is on the autistm spectrum and your son, frankly, sounds a lot like mine. I would want him tested for high functioning autism. If he had a speech delay, that's even more a red flag. If not, it could be Aspergers Syndrome. Due to great interventions, my son is doing so well today that nobody just seeing him would think he is ASD. Yes, he still has his issues, but he's a happy kid. Stims made him mean too. I would try to see a NeuroPsych. I like them a lot more than developmental pediatricians. They do extensive testing on the kids and can diagnose ADHD and beyond. Our Dev. Ped. wasn't very helpful to us. NeuroPsychs can be found in university and children's hospitals. These kids need a lot of school interventions and meds don't always work. ADHD inattention symptoms are part and parcel of ASD. They go togethr, kind of like soup and sandwich, but stims don't always work. They made my son's behavior worse. He is non-agressive off meds. His overreaction to being brushed against could be on account of his being overly sensitive to touch. Touch can actually hurt some kids with ASD. They all have a certain degree of sensory issues. If he has ASD, he isn't a bad kid, but he's wired differently, like mine. I wouldn't trade my kid for any. He is such a sweetie with such a good heart, but he is different, which is, to me, BETTER :) I think you can help him the most by 1/Taking him to a NeuroPsych 2/Getting early interventions 3/Diving into learning about whatever it is deemed he has 4/Stop comparing him to other kids and wishing he were "normal." 5/Fighting for him for special placements in school/accomodations/aids/special ed--whatever he may need. Since he's not really diagnosed thoroughly yet, you'll know more afterwards. I hope you choose a NeuroPsych. I'd take him off meds that made him mean. Good luck.

 

OlderMom38848.3026273148Well, times have been extremely rough here lately.  I've had some conversation with a few people here and it has helped some.  Today I had to go into the school early for a meeting about the 1st grade play and had to bring my son with me.  He was totally off the wall.  Running around the school, rude to all the teachers and ran into the gym where the kids wait for the school bell to ring before they go to homeroom.  He ran over and started pushing a child out of the line declaring that was his spot and screaming and causing a real bad scene.  He hadn't even been in there yet he and honestly still thought that was HIS SPOT.  I had to take him by the arm and literally drag him out of there kicking and screaming.  We got to the office where he screamed at me and crawled under the chair, behind the window blinds screaming and screaming how he wanted me to leave and NOONE was gonna boss him around.  All the teachers just looked on with their mouths hanging open .. I didn't know what the hell to do!  I snagged the principal and told him that my son was not acting right (duh) and he suggested I take him home because thats how he was all day yesterday too.  He told me to call his doctor.  My son gets like this when he is on the ADHD meds and he only takes 2.5 of focalin and one quarter of a .01 clonidine.  He has had a history of this type of behavior on 5 other stimulants he has been on.  He is not like this when he is not on the meds but he is still out of control .. just happy about it IF you understand what I mean.  He is NOT mean OFF the drugs.  So he is home with me today and I have a call into his developmental pediactrician.  Im having a terrible time finding him a new doctor for evaluation .. I dont think we are dealing with adhd alone here.  He has major sensory issues, demands routine, lacks eye contact and lacks social skills.  He has a major misconception when he is brushed up against or bumped into that it was purposely done and will retaliate physically.  He screams when others are talking and can't stand to hear it.  I am going to push his developmental pediatrician to help us find a doctor who can help him that accepts our insurance. I cannot afford to pay these drs rediculously high fees (certainly for good cause) I just simply do not have the money.  I just needed to get this out .. I've been sobbing since we got home wishing my kid was just normal .. at least for a day .. then I feel guilty .. guilty for feeling that way when he does have good in him .. and I love his unique ways .. He is so cute, funny .. and I love him so much but I just need a break from the mean, the bad and the ugly.  This is the child I was told I couldn't have, that I cried for .. that we wanted more than anything .. that I had surgery to be able to have .. Why can't I help him?

Oh so sorry you are going through this now...Can you take him off the stimulants for a while if you think that might be causing the anger ?  ( call the doc and see what he/she thinks)

What is your son like not on the stimulants?

 

good luck frustratedinpa,

You sure have your hands full with that school....what is a TSS?

As a mom with a kid who had two wrong diagnoses, I wouldn't medicate him AT ALL, especially if he's better without meds, until you know exactly what you're dealing with. There is no point in medicating HFA--no meds help autism. SOME kids on the spectrum do all right on stims, other freak on them. I wouldn't go with Abilify, an antipsychotic, until you find out if there's a need for it. If it's HFA, many of the kids do well with special school placements, intereventions and NO MEDS. If he isn't biting himself or hurting others, why even medicate? My son was on: Ritalin, Concerta, Adderrall (oh, what a bad idea!), Prozac (an even worse idea), Risperdal (and even worse idea than the Prozac--he started having muscle spasms that can be serious), Zyprexa (same thing), Depakote, Trileptal and Lithium. His diagnoses started out with ADHD/ODD and moved to bipolar, both wrong. The bipolar really puzzles me to this day--my son doesn't rage, but he has very literal thinking. When the psychiatrist asked him if he heard voices in his head he said "Yes." So the Psychiatrist thought he was hearing things. When I ask him about that now, he'll say, "I *do* hear voices in my head. You just talked to me and I heard your voice." HFA kids are very hard to evaluate. They are very literal, they can act both ADHD and bipolar, and they fool  and confuse evaluators. That's why I recommend NeuroPsychs who do so many tests and really try to figure out what the problem is over a span of many hours. Psychiatrists don't do this. Neither do regular Psycologists, Neurologists, and the schools don't use the same testing and almost always miss autism. If he doesn't have HFA, a NeuroPsych will be the best one to know because they test for ADHD and beyond. But don't medicate your son without being sure what he has. My son went from 100 pounds to 140 pounds in three years on medication. He had thyroid problems, wet the bed every night (Lithium), and was put through the ringer of side effects. He is much better off all meds and is thriving. There's no rush to medicate. The meds will always be there. Find out what the problem is first. I feel your pain--you waited a long time for your precious child. Like you, I had one child then needed to adopt the rest, and I love them all. We adopted Lucas at two and knew he had problems, but thought it was "severe ADHD" (emphasis on severe). I love him as if I'd given birth to him and think of him as only mine even though we're not even the same race...lol. When I see him, he makes my heart sing. His autism has not stopped him from being a bright, caring, loving, happy 13 year old and your child can progress tons too, if that's what he has. Love your child, relax, and see a NeuroPsych. And, in my opinion and experience, do not medicate him until you know what you're medicating. Too many professioinals don't spend enough time evaluating and are very quick to pull out the prescription pad. I found that some professionals will even give you the exact pill you want your kid to have. I had one ask, "What do you want to give him?" If he's a sweet boy off the meds, he probably doesn't need them. He can get school interventions that don't include medication. If you like, while you're waiting for an evaluation, you can try alternatives, but even they can have side effects sometimes. I wish you lots of luck. Our journey was long, hard, and frustrating and I hope my advice can save you some of our grief. (((Hugs))).

Patty .. I pm'd ya!

Joemom.. He has a TSS in the afternoon and a school aid in the morning.  I am in the school with the principal all the time.  They seem to NOT know what to do or they actually make the problem  worse I feel with the way they handle the situations.  His teacher has little patience.  The TSS is pregnant and has fallen asleep a few times in class so I dont see how that is much help either (I can understand she is extra sleepy being pregnant but I may need to get a new one if she is not up to the challenge).

Thanks for the reply.. I am doing everything I can with the school.

iluvmydal NO thats what the AIDS are for - redirection.  My son is in a class where alot of children have behavior issues.  The students should not have to put up with being pushed, screamed at, or seeing my son have meltdowns either because of his behavior on the meds.  To me thats more traumatizing then my son needing to do his work standing or getting up for a walk every now and then.  I know this is a touchy subject between parents and teachers.  Our school pushes meds for children like its candy, Im not being sarcastic either.  Thanks!

Joemom a TSS is the specialist from wrap around services that work one on one with my child from an agency through our insurance ... I don't know what TSS stands for though   They can either work with a child at home or at school or both.  We opted for school this year as we had one at home last summer and in addition to be invasive for our family, it was yet another transition that he had a hard time dealing with .. we were finding days were better when the TSS did not come to our home (when he knew he was coming he got over excited and not in a good way .. maybe anxious or anxiety). 

Oldermom my son sounds so much like yours.  He too has said he hears voices but because "people were talking".  He is very clever and very tricky to evaluate. The funniest or maybe saddest thing the teacher called me for was ... One day .. the class was doing centers (and they do this every morning) where the class is broken down into 5 groups and they all do different things (REALLY BAD FOR MY SON) all the kids are aloud to talk, some are reading aloud while others have to concentrate on writing a story!  Well the teacher calls me and tells me my son was "hearing things" .. concerned I said I wanted to speak to him... she put him on the phone and I asked him about it .. he said I cannot stand hearing the kids read!  I said put the teacher back on .. I asked her if the kids were reading aloud.. She said yes but very quietly.  I said I think thats the "voices" he is hearing and their is no cause for concern.  Oh boy!  The structure of the class this year has also hurt my son a great deal .. I can't get them to understand that.  Not only MY son has had to leave the room and do work in the hall because of these CENTERS she has .. I go into the school every weds to help the kids with reading and have had children come out to work on their story writing because they could not concentrate (and they do not have adhd).  The OTHER first grade teacher would have been a PERFECT match for my son.  He is LOUD, funny, and has his kids doing the same thing at the same time .. I hear their class while I am there and have loved what I heard.  But that class was full to capacity and I was told I could not switch my son.  He is passing so all I can hope for is the RIGHT choice of teacher for him next year.  Which I will be discussing with his principal then it will be  put in writing what I want for my son! Last year was awesome .. he had the best teacher who INSISTED on NO AIDS and NO outside help .. she said she could deal with Tommy just fine and THAT she did .. SHe had a cubicle set up just for kids who need a more private space to get their work done .. My son would say he is "going to his office" to do his work and that he did and a wonderful job too ... this year I can barely make out his sloppy writing if he writes anything at all.  Its amazing how his work- neatness, completion and accuracy has declined this year. 

Well said.

Frustrated - I sent you a link for the neuropsychologist that we are currently working with for Dylan. The testing, total, will be 8 full hours, done in 2 hour increments. The testing is very thorough.

The meds - I feel ya. My youngest son, who has no diagnosis, and there is NOTHING wrong with him, is in a class with a teacher that just insists he's ADHD. She can bite me, I'm not giving him squat.

In our case, Dylan has had 17 medication trials over a 6 year period. I wish I had found all these boards way back when, but didn't - and was working on what the psychiatrists were telling me, even though they weren't really listening. We've done the gamut of stimulants (Ritalyn, Concerta, Metatadate), tried the blood pressure stuff (Tenex, Clonodine), tried the antipsychotics (Risperdal, Abilify, Seroquel), tried others (Depakote, Strattera, Adderall, Tegretol, Topomax), I know I'm missing a bunch - but my point is, while he was not being dx'ed correctly, all these meds I pushed into his body did nothing but make him worse. This is because he did not have an accurate dx. I'll never forget our very first pdoc appointment when Dylan was 3. It was a 15 minute appointment. How can you dx a child in 15 minutes?? The pdoc looked at Dylan, said he was very hyper, ADHD, and gave me Tenex. Didn't work - but he kept insisting ADHD.

Miraculously, 6 years later, Dylan got an appropriate dx of Bipolar/PDD/ADHD. Now that he's on the RIGHT meds, his life is great. But we wasted alot of time with stupid doctors that didn't listen.

As far as the Abilify goes - Abilify is a new medicine, it has not been out 5 years yet - it was introduced in 2002. My son is on this medicine - and it is an atypical antispychotic. You want to really make sure, FOR SURE, that your child is going to benefit from this before you give it to him. It is NOT a long term medication.

Janna

TSS = Theraputic Support Specialist

Thank you very much Sounds like my sons first psych visit .. he drew a picture .. 15 minutes and 60 bucks later (insurance copay) he was going home with adderall!  It didn't feel right and guess what people.. if it doesn't feel right .. it probably isn't!  I'm learning.. I have learned and continue to learn.  Adderall and concerta and strattera were the very worst three for my son .. Violent explosive episodes .. total mania and mayhem!  I'm not exaggerating.  The ridilin types were a bit easier on him but still a marked change in his attitude when the drug would kick in and then wear off .. he would go from a happy, easily stimulated and over excited little guy to a mean, pushy, bossy brat then back again (THATS when he has ODD and MOOD DISORDER).  I'm just so ready (and I know my son is too) to get OFF this rollercoaster.just an idea but perhaps the school can get some extra help in the classroom while you get things figured out...if he does infact have HFA then they will need to get some services inplace for him especially because the meds seem to make him worse...you may want to talk to the principal...or someone incharge of special education.

so sorry to learn you're having such a rough time.  dependsing on where you are in pa, you may want to try a.i. dupont hospital for children in wilmington, de (just outside of philly).  they have a wonderful behavioral health department and can condut any and all the medical and psych evaluations necessary. 

good luck and hang in there!

Quote....  "What they need to do is give him a little space to breath .. he gets sent to the principals office for singing, or walking around the class room .. or shouting .. I'm sorry but I feel the teacher has no paitence and can handle more than she thinks.  Children KNOW (especially these children) when an adult feels loss of authority and he pushes that to the limit."

Keep in mind that his behaviors may be detracting from the learning of the other children in the classroom. His behavior could be creating more problems for the teacher to deal with. In this day and age where there are so many expectations set forth for all teachers especially with the rigorous tests and standards, we may not have enough patience to diffuse behavior situations. Honestly, it is easier to "nip" the problems in the "bud" before they escalate. No teacher wants their students medicated unless it aids in helping the child to participate and learn up to his/her potential. I want ALL of my students to achieve to the highest degree possible. I can not afford the extra time to continuously redirect students or to stop distractions such as wandering around the classroom. I would say going unmedicated is the right route to pursue as long as his behaviors do not interfere with the learning of the children.

It has got to be frustrationg... I wish you the best of luck.

 

I work in a child psychiatric residential treatment facility and have noticed that  A LOT of our ADHD kids just don't tolerate stimulants or Strattera. It makes them furious. I would certainly agree with seeing a Neuro-Psych. examiner for testing, but one thing that I have been very impressed with is Abilify. There are certainly risks with any medication and all of the side effects need to be considered before beginning any medication, but I have noticed over the last five years that ABilify has worker far better than any other medication that we use at my job. Your son may infact be a little too young to try it though, but it's just a thought. Another new medication that we are having a lot of success with is Lamictal; however it can have a very serious and possibly fatal skin rash (STevens Johnson's Syndrome) side effect. This is very scary. I personally have not seen it yet, but our doctors go very slow in increasing the dosages. I think that it is certainly worth talking to someone more qualified than me about this.

I spent my whole morning and part of my afternoon calling doctors. I have finally found one.  He is a psychiatrist MD specializing in autism, anger management, aspergers, adhd and add in children.  I told them I want a new evaluation and explained all the symptoms and problems we have been having .. the receptionist even said sounds like autism.  SO I got us in for May 23 .. which is amazing considering some other places didn't have anything until Sept!  And we have searched high and low for a neuropsych and I even asked around different offices to no avail.  So I was assured I was traveling down the right road with this doctor we have an appointment with May 23.  I cannot wait!  For now .. he will be taken off all meds after I talk to his developmental pediactrician in the morning because of course she wasn't in today.  We have been having a much better afternoon after the meds wore off .. he is pleasant, happy .. and wants to go to school LOL .. but I told him he isn't aloud .. and besides they had a half day today anyway.  I feel so bad that I have put him through 2 years of medications that only made him worse .. but I also blame the school for the extra pressure they put on my husband and I.  And they will just have to deal with my hyper happy boy for a few weeks til summer .. wihtout medication!  What they need to do is give him a little space to breath .. he gets sent to the principals office for singing, or walking around the class room .. or shouting .. I'm sorry but I feel the teacher has no paitence and can handle more than she thinks.  Children KNOW (especially these children) when an adult feels loss of authority and he pushes that to the limit.

Thanks for giving me the extra PUSH to do something great for my son.  I appreciate all of your help! 

Oh and I am in Southeastern PA .. close to Philadelphia.

My son was on nine-twelve meds (I'd have to do a tally). Nothing made him better, in fact he'd get aggressive on stimulants and Prozac. ADHD just wasn't all there was. Often it's a first dx. when it's autistm spectrum or bipolar. Anyways, humming in class a SURE sign of autism...lol. It's a "stim." The kids hum a lot in inappropriate places--or they do other stims--touch everything, shake their hands, rock, anything OCD-type "stim" over and over again. Here's a good site about Aspergers Syndrome, although he may not have Aspergers. There are five types of autism. If he doesn't have Aspergers, he probably has PDD-NOS.

www.udel.edu/bkirby/asperger/fram1.html

 

[QUOTE=OlderMom]

It's a "stim." The kids hum a lot in inappropriate places--or they do other stims--touch everything, shake their hands, rock, anything OCD-type "stim" over and over again.

 

[/QUOTE]

 

Older mom is that what an "ism" is.  I was reading an autism website the other day about playing with your child when they "ism" and joining in their "ism's".  Is this what they were referring to?

That may be the "Sonrise" program. A woman had an EXTREMELY severely autistic son named Raun and she actually brought him back. She would play on the floor with him and do his stims with him and basically really improved him. I read the book and it was impressive. The thing is, Lucas is higher functioning and, although it's definitely an "ism" or a "stim" as it is called professionally, I don't have to do it with him to "reach" him. He is plenty reachable, thank goodness, and doesn't even act or seem autistic most of the time anymore. Of course it never goes away and he has some autism issues, but he's improved TONS from the non-verbal, tantrumming, frustrated little boy of four to the calm, happy, verbal child he is now. "Sonrise" in an interesting method that may be highly effective for kids who have classic autism, but there are five types. Aspergers and PDD-NOS kids are high enough functioning that we actually remind Lucas not to hum in pubic and he doesn't do it anymore. Now in his room it's another story, but he's allowed to stim all he likes in his room, just not in school or out in public. Another thing autistic kids of all levels like to do is make high pitched noises, and my son has learned to save those for his room too...lol. He is much more "aware" than he once was. Then, again, he's had lots of interventions. I've already got that taken care of.  And just to touch on the parent teacher subject .. not all teachers are alike .. I'm sure you know that.  I don't feel my son matched with this teacher this year and she really does lack patience and understanding.  I also don't care for her structure .. with soooo many children seeming affected by adhd and behavior problems these days .. why have 5 different lessons going on at the same time in the same classroom especially for 1st grade??  I respect your opinion, I do, but until you have a child with these problems I don't think you quite understand the parents prospective.  These children deserve to be in the class with special interventions and understanding.

I am glad that your son has an aide in the classroom. I do not and don't see that happening in the near future unless I have a child who is extremely needy. It (ADD/ADHD/medication) is a touchy subject between parents and teachers... I pray that I don't have to deal with this in my own children. I know how frustrated parents and kids get... I do. I just wanted to give you another perspective so that you could possibly "walk in your child's teacher's shoes".  I hope you don't take offense to that. If your child is doing better without, great!! I would just suggest that you contact a neuro-psych to help you out.

Good luck...

My son was diagnosed with ADHD three times. All in all, they saw him for maybe a total of an hour. "Hyper? ADHD. Which med do you like?" I'm amazed at how many professionals automatically assume that inattention and even bad raging is due to ADHD and it's even more frightening that so many parents refuse to question a diagnosis when stims aren't working, the kid is a total mess, and the house is literally held hostage by the child's, imo, uncontrollable behaviors. ADHD has come to mean everything under the sun to some clueless professionials and without the right help for the right disorders, the kids will only get worse. That's why I try to warn parents who may never have heard of early onset bipolar in children or who don't know what PDD is. ODD is just a term describing symptoms and, in of itseslf, is not a very helpful label and is usually due to other things. ODD is normally given my non-NeuroPsych Psycologists--few Psychiatrists (with the MD) or NeuroPsychs give that diagnosis by itself. Yes, we had that one too...lol. If your child is on the autism spsectrum he would probably do best in a smaller classroom with less distractions. Whispering can sound like a locomotive to these sensory-sensitive kids. When I barely whisper to my son he'll say, "Don't yell at me!" Of course, he can't tell his own tone of voice and is PRETTY LOUD himself! ADHD and bipolar my foot! :) The kid doesn't rage and has been happier off all meds. The meds activated him. Exactly my son as well!  I have to tell him to lower his voice 20 times a day yet my husband and I can't have a quiet conversation without him screaming that we are causing his head to hurt with all of our loud talking!  He is VERY sensitive to ALOT of different things.  Feel, touch, sound, sight .. It is so frustrating that I can log onto the web and see RED FLAGS for autism spectrum disorders but no matter how many drs, psychologists he sees and I explain these symptoms too, they just aren't getting it.  We are hoping and praying and we are going to push this new dr for the right dx .. lets hope his expertise in autism / bipolar / adhd gets my son the right dx and the right treatment for some much needed relief for everyone in my family here.