Dara

New Member
He is on Depakote for the seizures. He had a 24 hr EEG done and the seizures happened when he was falling asleep and sleeping. They did not happen at any other point. He was video taped in the hospital with this test. We trialed an antidepressant on top of the seizure medications. The dr is saying he has 2 separate issues which I agree with. The antidepressants were used for the Pervasive Developmental Disorder (PDD) issues. He said that they work very well in children with Pervasive Developmental Disorder (PDD). We gave it a try it didnt work so we moved on and decided to try ritalin. I dont think he was even taking 1 tspn. It was a very small dose and that caused problems so we stopped that and now are on only the seizure medications. We do another 24 hr EEG in December to see where we are at there. I was on Depakote for 16 years. The depakote does not have anything to do with the behaviors. His behaviors have not changed since before or after the depakote. They are the same he is just older. I have an appointment with a child Psychiatrist on august 5th and from what I understand, he does not give out medications so easily. Hopefully he will be able to come up with some behavioral plan that works for Sammy
 

totoro

Mom? What's a difficult child?
I know you are trying everything you can and it is just out and out frustrating. Your family will figure something out with time, hang onto the hope.
For us K did great in school from 2.5 up until this past year, she just turned 7. While she was the "most" in each school and class, you know, loudest, funniest, hyper, moved the most all of that... none of the teachers ever thought it was a problem. Her teacher this past year finally started "seeing" some things but just didn't want to deal with them.
K "saved" all of her symptoms for home. This is classic behavior for a lot of our kids. It took me 2 hours sometimes to get her to school, i would pick her up and it would take me 45 minutes on up to get her out of the car, she would be sobbing. About everything and anything. Then the violence would start.
I am not saying Sammy is BiPolar (BP) but all of our kids handle things in different ways. They have their safe zones.
N speaks perfectly at school, but at home she loses speech, babbles. Baby talks... Can I get anyone else to see it? Not yet. So for now we just ignore it, and try to keep her anxiety down because that is when it gets worse.
Neither of my kids can do rewards or tokens or any of that stuff. N a little bit, but she is only 4. K No Way... only if it is right now.
Hang in there
 

susiestar

Roll With It
Oh, with the Aspergers we had the saving up all the behaviors. Until he was in a setting where he was bored. Then it all tanked.

Maybe a different anticonvulsant would be helpful? They really do help with behavior in some kiddoes. My Aspie was helped greatly by depakote for quite a while.

I think you are wonderfully skilled at seeing days as "good" even if there are major episodes. That is something I had to work at and something my husband never really mastered. For husband it is possible to "ruin" an outing, day, whatever with a kid who acts up for 20 min out of several hours - even if the acting up is not in public.
 

meowbunny

New Member
I don't know why, but while reading your comments, the first thing that crossed my mind was food allergies. Maybe the good one day, awful the next pattern. You might try a food diary showing everything he eats and when and his behavior. You might see a pattern (gluten at 12, rage at 1). If some of his issues are food-related and you can find a pattern, you can then eliminate that food (I know, easier said than done, especially if gluten or red food dye). It really has made a difference in some kids.
 

Dara

New Member
We did bloodwork for food allergies and the enzyme bloodwork for wheat and gluten allergies and he didnt have that. We also checked to see if he was hyperglycemic and that wasnt it either. He is so picky that I cant imagine if he was allergic what we would do!!
 

Fran

Former desparate mom
Dara, I have flashbacks reading your post.
My son also didn't care about losing his "toys" or rewards. He had potty issues and oppositionality. He was very difficult when we were trying to have him conform to normal school and home type behaviors.
All I can tell you after having tried most of what you are doing is that the behaviors are in keeping with his diagnosis. I would suggest that you involve yourself with a Pervasive Developmental Disorder (PDD) specialist and any services locally that you can work into your schedule. Find a Pervasive Developmental Disorder (PDD) support group. The treatment for Pervasive Developmental Disorder (PDD), seizure disorder and learning disabilities is very different from straight behavior issues.
You want to work with others who have tried ABA, or some other interventions that have helped social skills, impulse control and all the other issues at hand.
Have you gone to the O.A.S.I.S. site? You need to look at how to parent him through the eyes of Pervasive Developmental Disorder (PDD). He is not going to be a typical child in terms of intervention or behavior. Some of this behavior will evolve out and some will morph into other behaviors. Being knowledgeable, educated and prepared will diminish some of your frustration but I can tell you that it is hard work. You will have to set short term goals that are manageable and make sure to have a long term goal.
Being able to function as an adult was our long term goal. We aren't there yet but it's a work in progress.
Short term goals took a long time to achieve and some never were achieved despite a high IQ. IQ points are just numbers if they can not be converted into productive function.

You are going to have to suit up your armour to be his warrior mom. Educate yourself, research, ask lots and lots of questions, network with parents who have dealt with many of the same issues. Ask questions of teachers. Although the education system really lags in terms of educating our kids. They are square pegs that don't necessarily fit mainstream or special education.

As a side note, we had potty training issues, possible seizure issues, mood issues, school issues and on and on and on. All of our kids have different degrees of delay but they seem to have many of the same problems growing up within our system.
 

Josie

Active Member
Dara, my kids don't test positive for wheat/gluten or dairy allergies either. One of them has also been tested for celiac disease multiple times and it was negative. The doctors used to tell me it wasn't a food issue.

difficult child 1 is a easy child now as long as she stays away from gluten and milk. If she has even a trace of it, she reverts back to her difficult child ways.

I would encourage you to try the gluten free diet for him. There is actually a link between epilepsy and celiac disease. People with epilepsy are more likely to have celiac disease and vice versa. Unfortunately, there is a lot yet to be learned about celiac disease/gluten intolerance. The tests they have are not very accurate.

My child is very picky. Before she changed her diet, her favorite (somewhat healthy) foods were grilled cheese and macaroni and cheese. In the first days of the diet, I emphasized the foods she liked that she could still have, like potato chips, candy, and ice cream. I wanted to get her to comply and not feel deprived so I could see if it would make a difference in her behaviour. Then I would worry about a healthier diet later.

For her, I thought I could see a difference in the first week. It was hard to know for sure because she did have some good days even pre-diet. Eventually, it became clear that she would have to give up milk, too.

I did do a test from www.enterolab.com which told me she was gluten and casein (milk) intolerant. This gave me the conviction to try it. While most mainstream doctors will dismiss this test, it is very well accepted in the celiac community.

ETA: When I started the girlfriend diet, I could feel a difference in myself by the second day.
 

Marguerite

Active Member
I can second FOP with the food issues. It's not an allergy, which is one reason allergy tests won't show it. Another reason, is that with a lot of allergies, NO test will show it. THe blood tests for gluten problems is highly specific.

The problem (if there is one) is a sensitivity reaction. For example, I am allergic to penicillin (and a number of other antibiotics). If I have it, I swell up and get itchy hives. A classic urticaria response. That's mediated by the mast cells releasing histamine after being triggered by a cascade involving B-lymphocytes.

But there are other pathways for an immune system to respond, and unless it involves B-lymphocytes, allergy tests won't show it up. The only way is trial and error. I've had this information from the top bloke in Sydney, with allergies, food sensitivities and immune responses.

The problems in diet, if they're not gluten-related, generally revolve around some of the naturally-occurring chemicals in the diet. So you might think (as I did) that my kid should be fine, we only eat healthy food made fresh form natural ingredients grown in our own backyard, no chemicals at all. But honey - even water is a chemical - H2O. EVERYTHING is a chemical. And some chemicals are worse than others. Unfortunately, the most common ones are the ones responsible for the best flavours. The elimination diet is very bland because all the really good flavours have had to be removed. However, few people are allergic to all groups. Sometimes it's just one group and you can still find plenty of food that works.

The main chemicals are the salicylates - herbs, honey, most fresh food with plenty of flavour.
Amines - bananas, chocolate.
Glutamates - a number of sauces such as soy are classic examples. Tomatoes too, I think.
Plus Sulphates (onion family) and others.

There are other nasties, especially the artificial additives (colour, flavour, preservatives) and even a couple of natural colours can be a problem. I haven't got my books handy, I'm going form memory.

We trialled the elimination diet. It's not easy, but it was worth having done it. difficult child 3 was very cooperative and would read labels carefully. We found treats that were permitted - a brand of lemonade was OK, another brand of vanilla ice cream, and home-made honeycomb were his treats. As we allowed certain foods back in we were able to add more variety. By this time he was craving flavour and this made it easier to introduce new foods.

When we tried this with difficult child 1, we found out that anything with caffeine makes him worse, and so does orange juice. Caffeine is a natural chemical but can be a nasty in its own right, because it is a natural stimulant. I've known alternative medicine fans with ADHD who refuse stims but who medicate with caffeine instead. In my opinion, it's a blunt instrument, about as scientifically valid as retrophrenology (the science of adjusting someone's personality by making bumps on their head with judicious application of a hammer - Terry Pratchett, "Discworld").

The doctors I got all this from, are NOT fringe alternative practitioners. In fact, Prof Rob Loblay, who runs the Allergy Clinic through Royal Prince Alfred Hospital in Sydney, is loathed by many in the alternative medicine community because he is so conservative and campaigns against a lot of the more alternative people and products. I've interviewed him, talked to a lot of people about him (including those that expressed dislike). My own immunologist was if anything even more conservative, and yet endorsed all that Rob was doing.

What I'm saying - it's legit.

And I've seen (and been subjected to) some weird stuff in my time.

If there were an easier way, I know Rob's clinic would be doing it. But they're not.

Marg
 
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