I’m baffled.. I don’t know what to do? | ADHD Information

Hi MomofMatt

You are telling my story from our 2nd grade. Truly it was horrible. I read the book Ritalin Free Kids by Dr. Ullman and our lives changed. I don't want to sound dramatic but it really has helped my son turn his life completely around. The book will give you an overview of homeopathy and has lots of case studies. The book also gives hope. The kids in the book whose lives have been changed really exist and we are one of them. My son told Dr. Ullman that he wants to be in his next book!!

Welcome to this site. There is so much information available and good support.

MomofMatt ,

I totally agree with Graciepoints about not discussing your son any further with the school and getting an educational advocate. I also wonder if you have considered home schooling him? If he is struggling like this with the teachers and his fellow students, home schooling him until he goes to a new school in 6th grade (?) might be a solution. I say this because he did well in another school, so his issues don't seem to be generally related to school, just this one. Was the school in which he did well in the same district, as the one in which he is struggling?

lillian38809.9681828704

hi mom of matt:

lots of good suggestions. we are working with a neuropsychologist who specializes in neurofeedback. the visits are covered by our insurance.

i got the idea to seek a neuropsychologist after going to this board and reading the suggestions by everyone. a neuropsychologist seemed to be the most effective in diagnosing the actual impairment, according to everyone here.

we had been to a regular psychologist and his recommendation was meds. our pediatrician said that since we had gotten an IEP at school, let's hold off on the meds. at school, he was assigned to wonderful special ed teachers while still keeping DS "mainstreamed" in his regular class (he's in 1st grade) and his regular teacher.

what's working: behavior incentives and the neurofeedback sessions.

i cannot speak for other people's experiences, but getting an EXACT diagnosis is really important - i am speaking to your intuition. he could have ADHD along with other disorders and then again he might not even have ADHD but have other disorders. i've read on this board a number of other people who were misdiagnosed, so your hunch is worth investigating.

Hi Sharon and welcome! I'm glad you found us and hope you find information and support here. A few questions for you before I can help you out: Did your son in fact have developmental delays? Does your son seem socially "clueless"? Besides the neurologist, what kind of doctors evaluated and diagnosed him? Has he ever had a neuropsychological evaluation? Can you list all the meds/doses he's been on and how he reacted to each one?

SmallMom38809.7630671296

Sharon, it sounds like you are really frustrated with the school situation and I totally hear you. We went through 3 years without a diagnosis of not being able to do anything to help my DS and it can really take a toll. I have three suggestions for you:

I think at this point you need to seek an eval with a Neuropsychiatrist. Explain your situation with the school and ask for a full evaluation, if you can avoid it, do not mention any previous diagnoses.

Second, you should request an IEP or 504 for your son to get some classroom accommodations if he does not already have one. If he does, you should get with a special needs advocate to discuss accommodations you should add to his current one.

Third, you should consider refusing to discuss your son's treatment any further with the school and definitely get a special needs advocate. You are absolutley right, it is not the place of the school, teachers or administration, to tell you how to deal with your son's medical issues, to speak with your son's doctor without your consent. They are pushing and you need to push back, and an advocate would be great for helping you do that.

Hi everyone,

My name is Sharon and I have an ADHD child of 9 years old.

This is going to be a long post because honestly I don't know where to begin.

My energy is very low, my patience is good. But I'm becoming more and more depressed dealing with my son's problems. I don't know how to help him. I am tired and having a hard time dealing with the situation.

I'm not new to ADHD, matter of fact I know a lot about it. I did my research, medication included.

I guess I should start from the beginning, I need help and everywhere I turn I'm not getting exactly what I need or the answers for the questions that I ask.

I guess I should start from the beginning.

My son at age 4 started a headstart program. They found him rather unresponsive and thought he may have developmental delays.

I had my son diagnosed by a pediatric neurologist. She said he had adhd. I only agreed on Ritalin because I was hoping he wouldn't have the same problems that most kids have when diagnosed/medicated at a later age.

Well, that didn't work, because he has all the problems associated with ADHD as far as socially, school etc.

I've had him evaluated a few times and they always take in to account that he was diagnosed before... so he is labeled. He is also labeled at school. I swear the teachers are too busy watching for what he may do than watching what is going on around him.

At age 4 he was put on Ritalin and I also found out he needed glasses. With this I was told he was doing really well.

When he started kindergarten, he did pretty well. First grade not as well, Third Grade was miserable, and now Fourth Grade... It seems the school system is never satisfied.

He was recently diagnosed with ODD also. Because of what the school has told his doctor. But, I'm starting to wonder if the meds he has been taken has added this new diagnosis.

We have changed medications several times and nothing seems to work to the shoools satisfaction. When seeing the neurologist, she was conservative about the doses of meds he was taking because his BP and Pulse would be on the high end. Matter of fact at one point, his BP was higher than mine and I'm 40 years old.

I sometimes wonder if the medication now is making things worse for him. Since nothing seemed to be working, he has been off of meds for about 3 weeks now. I've seen some improvments at home... homework done, not as hyper, and he has his appetite back.

However, after a day of being off of meds I had the pricipal call me and tell me he needs to go back on them. I got calls constantly about inappropriate behavior that could have been handled at his school without my help.

I got a call from his principal at 7am.. (he doesn't have to be at school until 8am) I was told that if there is any problem with Matt that day, he would be suspended. She also demanded my son's Doctors number so that she could call him. I told her (the principal) she has no right to tell me whether my son was on meds or not and no right to talk to his doctor about what meds he should be on. I told her he was doing well at home. I told her how we tried every med available to him. I also explained that he is sensitive to these meds and that his vital signs are high because of them. In the end I think I said something like maybe she's the one who needs to take a pill.

I haven't heard anything from his school since. I did report her to the superintendent, he was supposed to call me and didn't.

Today we had a problem... I got a complaint from a parent in the neighborhood about my son causing problems and fighting. Now I know this neighborhood and the kids like to tease my son, he gets angry and goes off. He was fine for about two weeks, it took one bad day to set him off.

I read the new information on all the medications. His doctor talked about taking adderall again, it didn't work before. And it's been taken off the market in Canada because of sudden deaths and heart problems in children. His other alternative is Abilify.. I read about that too.. I don't really think that is the answer either.

Sometimes I wonder if he was misdiagnosed and taking the meds for something he doesn't have may have made things worse.

I'm at my witts end.... I have pressure from the school to medicate him. I see an improvment at home. (except today, he got into a fight and a parent was nice enough to man handle him and scream at me)

No one listens to my son to find out the problem, they listen to the few kids that stick together (family, or buddies at school that tease him), they don't watch what happens to set him off. They only punish him for his reaction.

Now how can I tell my son to act a certain way when other kids, adults don't act the way I'm trying to teach him to?

I'm running out of options.... I don't want to lose him, meaning, to the system or just going down the wrong path. I can see it happening and I don't know what to do. I can't even work, all the calls from the school, his appointments, his behavior made it difficult for after school care (on meds).

I can't figure all of this out alone. He sees the Dr once a month (new doctor, child psychiatrist...) all he is interested in is trying out the new drug of the month. My child is not a guinea pig. I think all the evaluations were bias.

I'm rambling... If anyone can make any sense out of this post, I would appreciate some advice or support or just someone to talk to about what goes on.

I'm not convinced that it's ADHD at this point because no med has worked to the extent where the teachers were happy. There is no sign of Bi polar. And I'm starting to think that all the drugs he's been taking since 4 years old may have contributed to his ODD. Am I on to something or am I just grasping at straws?

Thank you for reading,

Sharon

Mom of Matt 96

Sorry for your frustration..... I know it's been a long road for you! A couple of thoughts.... #1 - I think teachers expect that just b/c a kid is being treated for ADHD that the disorder will go away -- that has not been our experience (nor do I expect it to EVER be our experience! #2 -- sometimes meds don't work b/c they are not the right med or diagnosis, and sometimes they don't work b/c of the child him or herself. Have you looked into alternatives (supplements, homeopathy, diet mods, etc.)? Many of us are using them with success.

I hope that you find the answers you seek.... there are many posts on here that may help! If you are interested in knowing more about alternative treatment, you can check out the Alternatives to Meds section of this board. Good luck and welcome!

IMac38945.6857407407[QUOTE=MegMaguire]

[/QUOTE]

Thank you for your reply. I haven't tried any alternatives at this point and it may be harder to do since he's 9 (diet wise). I have looked into a few things but I get confused on what is the best thing to do. I'm on a limited income. My insurance will cover all the drugs he needs but not supplements etc.

My son has been at the same school from Kindergarten to 3rd grade, I moved and switched schools and he seemed to be fine. I moved back to the same school district he was in before and they complain. Almost makes me feel that if he's not on meds he's not welcome. I don't know....

Anyway, He's been labeled and they expect him to act a certain way. They watch for it. And some of the things they complain about seem like normal kid stuff. Should I medicate him to make the school happy? When there might be long term health risks? When he's doing fairly well at home?

I hate the fact that they pressured me into giving him meds at 4 years old in the first place.

Sharon

Mom of Matt 96

[QUOTE=IMac]Sharon, if you could fix just one thing, which would it be? [/QUOTE]

Thank you for responding..

Oh, there are many things I would change to help my son. I would do anything.

The one thing that I feel is most important, is that he gets angry (too angry) because he feels that no one likes him and he is always picked on.

I guess that is what I would change first. He needs to know how to not react or at least think before he acts when he's angry. Even though the other kids don't follow the same rules. He needs to understand that even though they do things and say things he needs to let it go. I've talked to him about this several times, he seems to understand and get a handle on it and then something will happen and it's all down the tubes. But not all the time......

Sharon

Mom of Matt96

IMac38945.6859837963

[QUOTE=IMac]As you have already done a lot of research on your own, I'm not sure what to say.

My first thought is that kids with ADHD are usually much younger, developmentally, than their peers; often two to three years younger. Kids with ADHD often have difficulty coping with groups of kids at play, especially without adult supervision.

Is it possible for you to invite just one friend over to play with your son so you can monitor what goes on?
[/QUOTE]

Yes, my son seems very immature for his age but not concerning all things. Yes he does have problems in groups. Waiting his turn etc. Unless it is at my home, there is not much adult supervision in my neighborhood. I am the adult supervision most of the time.

He does and has invited one friend over to play with and he does wondeful one on one. Although, this is only when they are inside the house. Outside the house, the other kids join in and I end up playing referee. I observe these kids. I'm not saying my son is a saint, believe me he has his problems. But I've seen how the other kids act. If I was a child and was treated the way those kids treat my son, I would be angry too. So in some ways I can't blame him for feeling angry.. I try to tell him, it's ok to be angry, he has every right but, he has to think before he reacts with anger. Sometimes he remembers, sometimes not.

Sharon

Given that you are on a limited income, I would consider moving back to the school district where he had no problems for the next school year, or home schooling.

The principal demanding to talk to your doctor about your child's treatment is very telling and completely illegal. I don't think you can fight them without an advocate, and advocates are expensive.

I would schedule neuro-psyche testing so you are sure about the diagnosis, and the doctor can give recommendations.

I would also try some inexpensive alternatives. Homeopathy and neurofeedback are very costly. I'm fairly certain that it is unusual for neurofeedback to be covered by insurance because I have both an HMO and a PPO and neither plan covers it. Perhaps you could visit the alternatives board and look into Omega-3 and magnesium supplements. Also, check on this board for ogram's Marble System. It's a great behavior incentive program and may improve some behaviors.

when i started on this site,i was moaning that the doctors here in britain refuse to give retilin to preschool children,after one week of reading several threads including yours,i am now happy that they don't.you have been very unfortunate with your school and your neighbours but don't let ignorance and intolerance let you down.you will find good advice and a listening here on this site and i hope wish you the best