New Member - What do I do next?

[bluetik]

My 7-y-o son is home from school again today for slapping another child in the face. The same child he poked with a pencil on Monday.

There is nothing worse than hearing your child talk about how much he hates himself for the way he acts...

So tell him again that I love him, and the problem won't get fixed unless he loves himself and wants to fix it. And again, I promise him that together we will find a solution.

But I don't know where to go next. He has an IEP at school for speech disorder (borderline qualifies for this) and for Occupational Therapist (OT) for his sensory processing disorder (SPD). I am going to request gifted testing for him this year if he gets himself under control enough to be able to do it.

He saw a pediatric neuropsychologist off and on for a period of 2 years, and even though he just loved her and begs to go back, I don't think she grasped the full scope of the problem. My son is *so* precocious, charming, and charismatic with adults that they have difficulty comprehending the level of difficulty he has interacting with other children. Our pediatrician reacts essentially the same way as the psychologist -- I get the feeling they think that the school administrators and I are just over-reacting to normal rambunctious boy behavior. Meanwhile, I am worried because I see a hardening of the attitudes of the staff at the school. We are in an all-choice magnet school with a behavioral contract. The principal has been patient and willing to work with my son, but I'm not sure how much longer this will last.

I think the next step is possibly a pediatric neurologist, but I thought I'd come here to get the advice of those who have gone before. I have made a promise to my son that I will help him... I just don't know how.

Oh, and FYI, per the psychologist's evaluation, he does not have ADHD or ADD, but she and another psychologist (with our district's early intervention program) both told me that he was at high risk for a misdiagnosis of ADHD. We tried Focalin for a period of about 2 weeks last spring until his teacher reported intense screaming episodes and "significant cognitive decay" with the medication. Because my son has a growth disorder, I do not see stimulant medications as a potential long-term solution for him.

What about allergies? I'm reading "Is This Your Child?" by Doris Rapp... allergist or neurologist or both???

Thanks!

 

[Josie]

If you are interested in allergies, you might consider the gluten free or gluten free/casein free diet. It has been a miracle in my house.

My older daughter was diagnosis'ed with depression and ODD. She was always fine at school but was a big problem at home. She was taking Lexapro and we were going to add an antipsychotic to decrease her violent tendencies. Instead, we put her on the girlfriend/CF diet and she is fine, now. No medications or therapy needed. It has been 4 1/2 years so far.

Probably a lot of people here will suggest a neuropsychologist test. That will take a while to get going and in the meantime, you could look into diet changes to see what happens.

I scanned the Doris Rapp book and as I remember it, she looks for allergies to all kinds of foods, not just gluten and milk. That is probably not a bad idea, either, but we have not had to go that far.

My daughter has to be extremely strict with gluten and milk. Even a trace of it will cause trouble. It is important to be super strict at first or you might not see a result even if it is the problem.

I just noticed your son has a growth disorder. If he is not growing as much as he should be, that is a good reason to test for celiac disease, if he hasn't been already. A negative celiac test does not rule out a gluten problem, though.

I just noticed your signature and wanted to add that when I went on the girlfriend diet, I no longer needed my Lexapro either. Maybe you would benefit from it, too. I only started doing it because my children were on it, but I am very committed to it now.

 

[bluetik]

Thanks Hope,

Yes, he was tested for Celiac (along with Cystic Fibrosis and all the other usual suspects for growth disorders) as an infant, and the results came back negative.

I have thought many times about removing Gluten / Casein from his diet, but he is an extremely picky eater, and all of the things he will eat have either dairy and / or wheat in them. He won't eat a chicken breast or anything like that, for instance. The whole prospect seems rather daunting to me.

We are doing a modified version of Feingold -- avoiding artificial colors, etc. That seems to help, but we are not as diligent about it as we should be. I work full-time and the kids are very hungry by the time I pick them up from school. We often go out to eat or I do some prepared food in the microwave just to get something to the table quickly.

Thanks again for your input. The neuropsychologist did a pretty thorough work-up on him. I'm just wondering what the neurologist will do that is different?

Thanks!

 

[smallworld]

So he has a speech issue (what kind?), sensory issues, difficulty getting along with peers and is gifted? Has anyone ever suggested Aspergers Syndrome to you?

 

[Josie]

My daughter was and still is very picky. There are frozen girlfriend/CF chicken nuggets if he will eat those and lots of other easy to prepare foods. There are even restaurants that will do girlfriend. I don't think it is a good idea to eat out at first, because it isn't alway really girlfriend and that would interfere with your ability to see if it worked. Eventually, you could still do that, though. We can even get a girlfriend/CF pizza delivered to our house now!

I can still have milk and feel well. My older daughter had to give it up to get over her psychiatric issues. My younger one had to give it up to get over her stomach problems. You might be able to do just the girlfriend part and have good results. Or even just the dairy free part.

Still, without a doubt, there is more cooking and planning involved. I don't miss the food at all, but I do miss the ability to just eat whatever is available without finding out every single ingredient involved. Sometimes that is just too much trouble, and I just don't eat if I am out and haven't planned ahead.

 

[Jena]

hi

welcome and i'm sorry your both struggling. does he always have issues with-friendships socially etc? does he have any other issue that scream out to you besides the school incident with-the kids? does he see a therapist weekly just to have a safe venting place thru maybe play therapy??

oh i remember feeling as you did, that's when it started for us same age, but you seem so much farther alone already good 4 u.

 

[Hound dog]

Welcome

And I was thinking along the same lines as smallworld. First thing that popped into my head was that he could very possibly be on the autistic spectrum.......right down to the charming adults but unable to interact with other children.

With Travis........we did 2 neuropsychologist evaluations both of which did turn up lots of things missed by other evaluations. But because Travis has the ability to do well with adults most of the time.......we had to go to a pediatric neurologist who specialized in autism to get his Pervasive Developmental Disorder (PDD) diagnosis. Took the man all of 15 mins. Travis pretty much screams it at you if you know what to look for. lol

I currently have 2 grandsons that will be getting neuropsychologist evaled in the near future. But I'm also taking them to the same pediatric neurologist Travis saw for the autism diagnosis to have them evaled for the autism I strongly feel both boys have.

There is a long list of signs and symptoms when you start researching autistic spectrum disorders. Keep in mind no child has to have all the signs and symptoms in order to have the diagnosis. Each child is unique. Travis is affectionate and fairly social to family members, many Pervasive Developmental Disorder (PDD) kids aren't. He can do social for short periods even with his own peer group......he just doesn't do it well at all. If possible getting someone who specializes in the area is better because they know what they're looking for and are experienced enough to know that not every child is going to have exactly the same set of signs and symptoms.

((hugs))

 

[bluetik]

Thanks for your feedback, everyone.

Jena, thanks for your sympathy, and just to be clear, this isn't new, but has been going on since he was about 18 months old. That's maybe why we seem ahead of the curve. It's just becoming a much bigger concern now that he is in 2nd grade and expectations are increasing around behavior.

The psychologist he was seeing didn't seem to think Aspergers was a possibility, due to his extremely strong expressive language abilities (his speech delays are strictly phonetic in nature, probably due to a high, arched palate). However, I have wondered, as well, if he might be on the autistic spectrum. We only see this psychologist periodically when he is having a particularly rough patch, and I am really ready to try for a 2nd opinion. I guess I realize that there isn't a quick fix, but I'd like to get us to the point where I don't have to worry constantly about him being expelled from school (the kids attend a magnet school with a behavioral contract) and activities, so he can build his self-esteem a little and be a generally happier guy.

I'm definitely interested in trying to do that through diet, if it's at all possible.

I realize I'm all over the place here. I think it's because I feel a little lost, like I'm grasping at straws. I guess I need to get a little more organized and put a plan of action together. I'm glad this community is here. I think it serves a great purpose and I'm looking forward to getting to virtually "know" all of you.

Oh, he also has tics, which have become more pronounced in the last year or so.

Last night, I e-mailed his Endocrinologist, who works at a children's hospital, to get a recommendation for a pediatric neurologist, and she e-mailed me back with the name of a Neuropsychiatrist specializing in Tourette's, Autistic Spectrum disorders, PANDAS, and Obsessive Compulsive Disorder (OCD). I also have a call in to our pediatrician to discuss our options.

Historically, his behavior has been better during the winter months (we live in FL), but it has normally turned the corner by now. Last year, October 5 was the date when he got some relief, and I remember this because I still have the e-mail from his teacher sent that day saying "wow -- it's like someone flipped a switch here".

 

[TiredSoul]

Historically, his behavior has been better during the winter months (we live in FL), but it has normally turned the corner by now. Last year, October 5 was the date when he got some relief, and I remember this because I still have the e-mail from his teacher sent that day saying "wow -- it's like someone flipped a switch here".

Wow - is he allergic to something that blooms there in the non-winter months? I don't know about FL but here in WA state the season is a little delayed this year. Seems like we had some nice weather later into the end of summer beginning of fall. Maybe things are a few weeks "off" around there too?

 

[BusynMember]

Sounds a lot like Aserpgeres Syndrome. I know it would be comforting if it were, but I really doubt if his behavioral issues are allergies. He may have them, but he sounds like a typical high functioning spectrum kid. Your best bet is to re-evaluate him in my opinion. I don't think this neuropsychologist got him right.
Take care

 

[Marguerite]

The psychologist he was seeing didn't seem to think Aspergers was a possibility, due to his extremely strong expressive language abilities

I agree with MidwestMom - one of the hallmarks of Asperger's, vs other autism disorders, is NO language delay. I have one autistic kid (high-functioning) who had significant language delay (he now has a uni-level vocabulary) and one more who clearly has Asperger's and had no language difficulties at all. Plus one more who we were told had Asperger's traits and there is still some discussion over whether she should actually get an Aspie diagnosis - and her vocabulary, from very young, was very advanced. All are exceptionally bright, but it is my Aspie son who seems the least bright and has chosen a trade rather an academic pursuits. IQs assessed in the mid 140s and we were told they were probably under-estimates. They have an older sister, also mid-140s IQ, who does not have any Pervasive Developmental Disorder (PDD) traits.

There is a difference between language delay and speech delay. A child who is non-verbal for other reasons can still have language. And a child who can speak, but is only echolalic, still has language delay even though they can clearly demonstrate their ability to vocalise.

Do you have a speech pathologist on board? We have found that a really good speech pathologist can be a huge asset to getting an accurate diagnosis of Pervasive Developmental Disorder (PDD).

The other point I want to make - according to Sydney experts at Royal Prince Alfred Hospital, about 30% of children with Pervasive Developmental Disorder (PDD) can also have food sensitivities which aggravate their symptoms or cause other problems. We actually went through their program for a while (it was part of a research study) but had to drop out when it was clear that difficult child 3's apparent digestive problems were actually extreme anxiety and not food-related. We had already ruled out milk and gluten as possible problems, so the Elimination Diet we put difficult child 3 on did not exclude milk or wheat. But it was still tough. What really impressed me about the team - they had booklets for everything which we took when shopping. Certain brands were to be avoided, others were sought after, according to constantly updated ingredients lists. We also had a list of ingredients to avoid and got very accustomed to reading the fine print on labels! difficult child 3 especially became very insistent at reading labels and was very compliant, but even so, there were often times when we made mistakes. Staying on an Elimination Diet, even when you try to, is not easy.

We found that people's ideas of food sensitivities are much more limited than the reality. difficult child 3 lost weight on the Elimination Diet, it is not healthy nor is it sustainable. But as a diagnostic tool, it is something we had to go through. First we had to wait for his constant exposure to all these naturally-occurring chemicals (gluten, salicylate, lactose, amines, glutamates) to wash out of his system. As I already said, we had previously tested for lactose and gluten sensitivities and found no change. But salicylates - you get those in anything with flavour. Herbs, honey, most fruit & vegetables. After taking out everything, we were left with white rice, white sugar, peeled potatoes, peeled pears (only lately, they've limited pears to one or two varieties), lamb and chicken without the skin. Nothing else at all. OK, a little salt. I've also known people who, while on this diet, developed a sensitivity to chicken.

It's a nasty diet to have to live on and nasty to have to administer. But you have to be on this for several weeks up to several months, then you introduce ONE group only, and observe any changes. If no change, that group can stay in. Then you introduce the next group of chemicals, and so on. If you get a reaction, you drop the offending group for another few weeks and then it's back to challenging the food groups. Laborious, but if done well it provides valuable information. And a I said, in 30% of cases, this team saw improvements. That means in 70%, there was no change.

I'm sure if you Google the hospital in Australia and look for the pediatric dieticiains, you will find information. You might be able to find a US connection, someone who has lists of US products which have been analysed.

Marg

 

[bluetik]

Thanks, everyone, for taking time to provide such detailed responses. I really appreciate your input. I have started the process to have Zach re-evaluated by a multi-disciplinary team. He wants so badly to find a solution to all this, and so do I -- I hope we can.