Need help ASAP!! Please!!

amother

Tue, May 06 2014, 7:51 am

(If you know who I am please don't say anything, I want to protect my sons privacy)
My son was diagnosed with ADHD when he was 3 or 4, and we were told that at some point down the road we would probably be told that he needs to be put on meds. Well, that point came this year. He is in first grade now, and we were told in novemberthat he needed meds. I made an appointment with a specialist but they couldn't see us until the middle of February, so we started medicating through the pediatrician. Not my first or second or even third choice, but it was basically "he needs meds or he can't stay." He would not have gotten in to any other local yeshiva at that point so.....
Anyway, the ped wanted to start him on vyvanse but the pharmacy didn't have it so we went aderol. Changed the dosage a time or two, then went to the specialist, who hanged him to concerta because the aderol wasn't working. He had started biting his fingers again, a habit I thought we had gotten rid of with the help of his karate instructors....he was acting bonkers on the aderol, and even with meds spent a lot of time "being sent out of class."
Anyway, so over pesach he didn't take him meds at all except for one day, and everyone noticed, in a good way. He was like a new kid. Yea, he had his moments, but over all he was great. After pesach my husband and I say down and talked about it and came to the conclusion that we want to try no meds again, because clearly he was able to get through a day. The first day back in yeshiva was great. The next day we got a call from the principal. My husband told him what was going on, and he said "ok, I'll let you try it out." Last week apparently was a disaster. I got a call on Monday, and it seems that wasn't the only day there was a problem.
So now they want him back on the meds, but I don't!! I think it's just an excuse. He sits right next to his rebbi/Morah so he won't disturb the other boys when he fidgets, but that means his rebbi sees every little thing he does.
I spoke to his OT yesterday, and we discussed putting accommodations in place for him.....sitting on a wedge, getting breaks from class every however often, going to the sensory gym in his school....
Now I'm lost. I am going to call the specialist today, but I really don't want him on meds. I really think he is quite capable, and in fact uses the meds as a crutch- "I can't behave unless I have the meds."
Not really sure what I'm looking for, but I feel a little lighter having gotten that off my chest.

5*Mom

Tue, May 06 2014, 8:12 am

I am not a doctor of any kind, so take this personal experience for what it's worth. Years ago, when SPD was poorly understood, we were also forced by an elementary school principal to put our daughter on Ritalin or else... I'll spare you all the irrelevant details, but the bottom line was that even though our pediatrician was sure she did not have ADHD or need Ritalin, he told us there was nothing to lose by trying it. If it helped, well then it helped, and if it didn't, then we would all be able to move onto the next thing.

So we agreed to a short-term trial of Ritalin. It lasted for 3 days and it was the principal (!) who begged (!!) us to discontinue the meds. Our dd was bouncing off the walls, in ways she had never done before (something we could clearly see at home as well). When I casually asked dd how the meds made her feel she told me, both with words and a very eloquent demonstration, that they made her feel all sleepy so she felt like she HAD TO WAKE HERSELF UP. Duh! Long story short, she was shortly thereafter diagnosed as being sensory seeking, received OT, some (though not nearly enough) accommodations in school and a healthy sensory diet at home. She is a completely different person today as a teen, and can easily, smoothly and appropriately self-regulate.

Sensory seeking behaviors are often mistaken for ADHD behaviors, but the meds will have the opposite affect on the child than intended. They will make things worse. Do you have an excellent OT who can work together with the Rebbe/school to create proper accommodations and get them on board with the necessary support?

amother

Tue, May 06 2014, 9:51 am

5*Mom wrote:

From what I have seen, the meds don't turn him into a zombie, which is a good thing :-) he currently gets OT 2x30 per week, but I really don't think it's enough. I have an iep meeting scheduled tomorrow and I spoke to the OT yesterday and we are going to try to work on some accommodations. One of the problems is that the rebbi is really not being so good about working with us. But I really don't want him on the meds, that's te biggest thing.

5*Mom

Tue, May 06 2014, 10:04 am

amother wrote:

Have you asked him how the meds make him feel physically? My daughter didn't look like a zombie either; she was taking care of it herself before anybody else noticed. Smile

About the OT, in-office OT is not where it's at for sensory issues. That's where the OT gets to experiment with different sensory stimuli to see how your son reacts to them, but in order to make a real difference to him in his life, the OT should be educating you about different activities that can provide him with the right sensory input to either calm him down or rev him up appropriately and then it's your job to educate your son so that as he grows he learns to identify how he's feeling, what he needs and how to self-regulate.

You might want to look into the "How Does Your Engine Run" program. Some OTs run workshops for kids, but it's a book that a parent can use on their own.

amother

Tue, May 06 2014, 12:13 pm

5*Mom wrote:

Have you asked him how the meds make him feel physically? My daughter didn't look like a zombie either; she was taking care of it herself before anybody else noticed. Smile

We do some sensory things at home (admittedly not as muh as we should) but I really can't give him as much time for it as I should because I have another child who also needs me very much, plus I have another child too. With my other one we do "bedtime routines"- we roll, we rock, we stretch.....but these things are not good for him at bedtime.
There are things that he can so on his own, like push ups and wall push ups, but I get distracted with the other kids and don't remind him to do them. I think I'm going to have to set an alarm on my phone....

seeker

Tue, May 06 2014, 12:16 pm

I think it is a very worthy idea to try other avenues before continuing with medications, given what you have explained. The sitting on a wedge, etc. At the same time, if you haven't already, you can try other strategies like dietary modifications. I think you can work out a reasonable agreement with the school, outlining what accommodations/modifications will be attempted and for how long (a couple of weeks sounds reasonable to me, unless the problems become so dramatic during that time that swifter intervention is warranted) before re-evaluating the situation. As 5* said, the fidgeting and such can be sensory stimming.

If you do end up trying medication again, do it with a specialist, not a pediatrician. They will be better able to explore options such as different doses and tweak it as needed. I've seen great results with kids who took a few tries to get it right. A kid who only has a problem in school (which is not an indication that the problem isn't "real," school is more demanding on the brain and that is not necessarily a bad thing - there is more going on, more learning goals...) can do well on short-acting medication taken as needed. I'm not saying it is right for your child; I don't know him and I'm also not a doctor. from what you've described it seems like medication might not be the best answer for him, but you might not know this until you've tried a lot of things, both medical and alternative.

amother

Tue, May 06 2014, 12:37 pm

seeker wrote:

We tried diet modifications when he was younger but it didn't make a difference. Maybe over the next few weeks and over the summer I can try again.
As I said, we started with the pediatrician only because we didn't have a choice. Now we go to a specialist, and I don't make a move without him. I'm not so familiar with all of the medications and how they work. I know concerta is a 12 hour med (is that long or short?) which is why we didn't give it over pesach- by the time he woke up in the morning it was just too late.
What are some things I can try? What kind of accommodations can be made in school? I know there is the wedge and he can do push ups and wall push ups, and he can take a walking break. What else can be done? Also what diet change should I try first?

chaiz

Tue, May 06 2014, 1:56 pm

amother wrote:

So I will talk to the Ot tomorrow at or after our meeting. Thank you!
Everyone has really been so helpful, I really appreciate it!! I was a little nervous to ask because I thought that if everyone heard he was on meds for 4 months they might just say put him back on, and I really don't want to.

If it was working, then yes put him back on. But from what you are saying it is not working. So what is the point of going on medications? I do understand that there are times where a yeshiva/rebbi can say we can only accommodate so far, but more needs to be done. However, that does not seem to be the case. Unfortunately there are still people who do not understand education.

Going to repeat 5*Mom. Did you get a full evaluation to tell you it is ADHD? Did he get a full physical to make sure it is not physical issues manifesting itself as ADHD? How was the diagnosis reached?

imasinger

Tue, May 06 2014, 1:57 pm

Hugs. Deep breaths. You can deal with this.

Let's break it down.

1. Are you sure of the diagnosis? If not, where can you turn for a second opinion?

2. If you are sure of the diagnosis, the next issue is treatment. Clearly, OT helps. It looks as if your medication trials thus far have not shown a result that works for you. What are the reports from school about his behavior on them? Is there any chance that the medication is working, but you are observing rebound effect at home? Again, a second opinion may be useful.

3. Has the school recorded what is going on? Do you believe them? Do you or your DH want to observe for yourselves?

4. Is the school helping your DS? Are there other choices that might be a better fit? Chanoch l'na'ar al pi darko.

HTH! Hang in there.

mummiedearest

Tue, May 06 2014, 2:16 pm

op, I know nothing about adhd meds. I know something about boys' schools, though. you need to look at this as a school issue right now. here are some questions to ask yourself:

1) do you like the school? if you do, why? if you don't, why?

2) is your son benefitting in any way from being in this school right now? I don't mean what he can potentially gain from it. is he getting anything positive out of his experiences with teachers/principals right now?

3) is your son gaining negative behaviors from his experience from school as it is? this includes behaviors learned from other children as well as behaviors in reaction to his teachers and their behavior towards him.

4) how is your son doing in numbers? are his grades on written work good? ignore any grades on behavior for this question.

once you've considered these questions, the question is this: do you want your child to remain in this school? if you do (for the right reasons), you may want to consider taking him out temporarily while you find a method that helps your son focus/behave. this can include any of the suggestions by other posters. if you feel this is a good option, notify the principal that this is your intention, and that you wish to reserve your son's spot for next year. then remove him from school asap. if you do NOT want your child to remain in this school, pull him out now. start looking for a program that will work with you. your child will not benefit from staying in a school that does not want him.

I know how hard it is to deal with switching schools, pulling out mid-year, etc. been there, done that, a whole bunch of times. and I know how much it can make you cry. be aware that many yeshivas do not provide a good environment for "out of the box" kids. and keep in mind that the yeshivas SHOULD serve the children, not the other way around.

good luck, op. let us know how things work out for you.