PANDAS, ADD, and Alternative Therapies

[emma1]

I have read a lot of the posts here about ADD or ADHD being one of the major symptoms with PANDAS. I was researching this the other day, and I came across a program called "Learning Breakthrough" which I think might be something like the very pricey DORE program. It is based on the Belgau balance board and balametrics, and does seem to have some research behind it. Ironically, I went to a school function that evening, and during the session, someone mentioned this program in a positive (but brief) way.

 

Has anyone ever heard of this or used it?

[michele]

Emma,

The ADD/HD is the major symptom we are dealing with daily too. I don't know about the program but am open to any suggestions on how to treat him for these behaviors. I have tried supplements but have seen some adverse reactions to certain ones. Right now I am only giving the omnisef. He is doing so well. However the ADD is really hindering his school performance. I need to figure this out before he falls behind academically. Keep us posted.

 

Michele

 

I have read a lot of the posts here about ADD or ADHD being one of the major symptoms with PANDAS. I was researching this the other day, and I came across a program called "Learning Breakthrough" which I think might be something like the very pricey DORE program. It is based on the Belgau balance board and balametrics, and does seem to have some research behind it. Ironically, I went to a school function that evening, and during the session, someone mentioned this program in a positive (but brief) way.

 

Has anyone ever heard of this or used it?

[emma1]

Michele, You have stopped all supplements then? I stopped everything, but the PenVK and the inositol -- and I try to remember the probiotic because I don't want the antibiotic to creat a NEW problem.

 

I have read a lot about this Learning Breakthrough and it sounds good but who knows. The DORE program is supposedly somewhat like it and it is very expensive (as in thousands of dollars). I just wonder if PANDAS ADD is the same as regular ADD. The program is based on working both sides of the brain, and seems to imply these kids do not have good balance and are not athletic. My daughter has great balance and is very athletic (though my 7 year old might fit their profile so perhaps I should get it and let them both give it a go).

[michele]

I am trying to go without supplements for a time since he is now tic free. I am documenting the changes. Even on a regular diet he is not having any tics. He is doing so much better. At times like these I get the false sense it is gone. I know I have seen the wax and wane before and it is great while it lasts. For the time being it is the PANDAS ADD causing him the trouble. My son's motor skills have been effected. He could really benefit from that program. He is failing in handwriting, and has some coordination issues. Learning to read has been hard because of his short attention. We will continue to go to OT. We see the Dr. Tues, and we will see what his suggestions are.

 

Michele

Michele, You have stopped all supplements then? I stopped everything, but the PenVK and the inositol -- and I try to remember the probiotic because I don't want the antibiotic to creat a NEW problem.

 

I have read a lot about this Learning Breakthrough and it sounds good but who knows. The DORE program is supposedly somewhat like it and it is very expensive (as in thousands of dollars). I just wonder if PANDAS ADD is the same as regular ADD. The program is based on working both sides of the brain, and seems to imply these kids do not have good balance and are not athletic. My daughter has great balance and is very athletic (though my 7 year old might fit their profile so perhaps I should get it and let them both give it a go).

[Calicat]

Hi Michele,

Here's one thing you could try for the handwriting/printing: get a small, tabletop sized white board and a few nice coloured low-odor whiteboard markers. Any time he has to do practice printing, brainstorming, spelling words, and so on, he is allowed to do them on the white board. I find kids really respond to it because it is novel for them, they love to erase it away afterward, and most importantly, it is very smooth and reduces "drag" compared with pencil and paper. Many kids hate to write because it feels hard for them and their muscles get tired. It is difficult to practise even more when it is already so unpleasant, so it becomes a cycle of less practice=less skill=more need to practice, but they don't want to. Hopefully, this breaks the cycle so they start getting some practice and retraining their brain to think, "Hey, writing doesn't feel so terrible after all!"

 

Hope this helps you out!

Calicat

[emma1]

Michele, I am so very happy to hear of your son's success!!!! No tics -- that is just so fabulous! One of my children has struggled with handwriting and we did OT for quite a while. My experience was -- and each child is different -- that it was more important to do something every day. So, while the OT was helpful in giving me a lot of great ideas, doing it only 1/2 hour once a week wasn't enough.

 

We tried several handwriting programs -- Handwriting Without Tears works really well for some. For us, it was just not helpful at all.

 

What finally worked for us was a combination of things. First, we really "worked" the hands -- piano lessons are actually really great for this. Also (and kids love this) buying bubble wrap and letting them pop the bubbles. Clay is great to work with because it is harder that play-doe. Squeezing a stress ball was also helpful.

 

Then, we did a program from a book that I bought. It uses a Brain Gym exercise, and it takes about 10-15 minutes a day, and you are supposed to do it 5 days a week. My child liked it at first, but later, not so much. I found playing music really helped us make it through. The book is Brain Integration Therapy by Dianne Craft. If you Google her name and the title, her website should pop up. It is quite inexpensive -- all you need is the book, large sheets of paper, and crayons. It involves making large sideways figure 8s, and then making each letter. Although all the activities helped get the hands ready, I think that this program is what actually made the handwriting readable.

 

I could really see that this Learning Breakthrough thing might be helpful for gross motor - I've also heard martial arts is supposed to be good for both attention and gross motor (and, especially for a boy, might be really fun). Em