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My son Dylan has what I believe to be PANDAS although this is not a medically confirmed diagnosis. We have seen great improvement using alternative treatments to try and attack his allergies and strep issues. One thing that is remaining that is causing some trouble in school is his handwriting issues. His handwriting is so hard to read and I don't know what to do. I never thought this was associated with his tics or ocd untill we tried a Naet treatment on strep antibodies and he seamed like a new boy for almost a month. While he is still 90%-95% improved his handwriting has once again deteriorated. When he writes he writes over and over the same letter on top of itself making it very hard to read the final product. His teacher is trying to get him approved for occupational therapy to help this. She did say it can take several months to get this approved if he qualifies. I am having a hard time finding info on what this therapy involves. I have heard some mothers mention it in this forum. Are there things I can do to help coach him with this problem.

 

When I sit with my son to do his homework I am constantly reminding him to only write the letter or number once. He says it is so hard to stop himself from doing it time and again. I don't want to harp on him I know it's hard for him to control. Is my constant reminding helpful or harmful. He is bright but how can a teacher grade a paper she can barely read.

 

Are there books that describe coaching methods to help with compulsions. Or does anyone have suggestions.

 

Dylan's Mom

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Dylan's Mom,

 

I can not give you advice on what to do. I think that OT is your best bet. We did consider private OT at one time when our son's handwriting was at it's worse because we couldn't get the school system to work fast enough. Then things started to get a little better and we held off. The doctor told us that alot of PANDAS kids have trouble with fine motor skills. Looking back, my son always struggled with those type issues. He always hated to color in pre-school. He was always so smart, but I didn't think the kid would ever tie his shoes. Honestly, he is almost 12 years old now and he still begs me to buy him slip in shoes. Not that he can't tie them now, but he just hates it and can never get them tight enough. His handwriting is still pretty awful, and his Dad is on him constantly about it. He alway shrugs and says he will just type everything on the computer when he is grown. I can always tell when he is having a flare up, he starts having trouble in math and his handwriting gets so bad you can hardly read it. It is so odd how similiar some of the children are. My son's science teacher told me last year that you really have to get on that OT pretty early to help with handwriting because that becomes a pretty permanent pattern early on. I would keep on the school system, call every few weeks. You know the drill, the squeeky wheel and all that. Good luck!

 

Dedee

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We are going through the same process with the OT right now. My son is in kindergarten. We have struggled with the fine motor for a few years. He hd trouble forming letters in preschool and hated to color and cut and paste. His is worse during flare ups too. Andrew is smart like Dedee's son and prefers to type on the computer. He also has no interest to tie his shoes and can not ride a bike. They are all similar which is pretty amazing! Dr. Murphy said to get the OT right now too. She said this is the stage of the game where it can make a difference. We go the presciption from her. I am sure your ped could write one. Then ask the school in writing for an OT evaluation. If you have any diagnosis give it to the school with your request. They then have so many days(30) to get a meeting together and come up with a plan in writing. You will be in on the second meeting where they sign off on the plan. Best of luck and keep us posted on your progress. Andrew's first IT meeting is Thurs. I will let you know how it goes. The school said it will have to be proven that it is essential for him to get OT at school. I could take him to a therapy place but I thought I's start with he school. Hopefully the diagnosis and prescription will get us help at school.

Michele

 

Dylan's Mom,

 

I can not give you advice on what to do. I think that OT is your best bet. We did consider private OT at one time when our son's handwriting was at it's worse because we couldn't get the school system to work fast enough. Then things started to get a little better and we held off. The doctor told us that alot of PANDAS kids have trouble with fine motor skills. Looking back, my son always struggled with those type issues. He always hated to color in pre-school. He was always so smart, but I didn't think the kid would ever tie his shoes. Honestly, he is almost 12 years old now and he still begs me to buy him slip in shoes. Not that he can't tie them now, but he just hates it and can never get them tight enough. His handwriting is still pretty awful, and his Dad is on him constantly about it. He alway shrugs and says he will just type everything on the computer when he is grown. I can always tell when he is having a flare up, he starts having trouble in math and his handwriting gets so bad you can hardly read it. It is so odd how similiar some of the children are. My son's science teacher told me last year that you really have to get on that OT pretty early to help with handwriting because that becomes a pretty permanent pattern early on. I would keep on the school system, call every few weeks. You know the drill, the squeeky wheel and all that. Good luck!

 

Dedee

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Dylan's mom,

 

From what you described about your son's handwriting, it seems more like a compulsion than a hand writing issue. If it is a compulsion, IMHO i may not want to harp on him too much as stress can possibly cause even more stress. Perhaps cognitive behavior therapy may be helpful.

 

My son also had fine & gross motor skill issues. This is what's helpful for my son. I have a table just for arts & crafts with crayon, sissors, paint, glue, hole punch, paper, yarn... that are assessible 24/7. So he does artwork all day long (It helps that we don't watch much TV. Otherwise, he would be in front of the tube instead). I also let him play with playdough or make playdough. We have a small garden for the kids, so l let him water with the hose and dig dirt, that helps with his fine motor control too. We also do alot of messy or water play. Glitter glue sticks are great because the squeezing helps with better finger control. We gone thru tons of them.

 

Pat

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hi Dylan's Mom

 

the writing over letters and erasing them to rewrite can be an OCD behavior

 

my son had a lot of problems with this and so his 504 plan had built in accomodations to allow him to use his AlphaSmart in class and to be able to type all homework assignments

 

once his OCD had been brought under control with the specific supplements for it, this area also got better, tho writing accomodations remain built into his 504 as even tics can interfere with writing, especially long assignments

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That is interesting to hear about the writing over letters, however does he form the letters niceley? Although my son has beautiful penmanship (for an 8 yr old) the teacher has mentioned that he erases alot, and when she writes something down to show him, she said he goes over it again so it will be in his handwriting or erases it and does it over. I notice the erasing aloth during homework too, its like every letter has to be perfect or he's not satisfied (compulsion?). I'd be interested to know about the OT too, as we are in process of putting together the plan for him, but who will determine that? I guess after he goes through the evaluation. I am not happy with the time it takes either, they said it will be about 60 days to go through everything.

 

Also, Dylan's mom - are your son's tics still under control since the NAET treatments? Had you ever noticed this type of handwriting thing before or just recently? Or is this something that was resolved, and is not starting again?

 

Thanks

Faith

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Thank you all for your replies.

 

The tics are still better. I have not noticed his new tics in a couple weeks. We have been treating specific strep and brain antibodies over the last couple weeks with NAET. Strep Viridens antibody, M12 peptide antibody, streptolysin O antibody, Myelin Basic Protein antibody have all been treated. We still have Deoxyribonuclease Antibody and Hyaluronidase antibody to treat. I don't know if these are making a difference. Dylan's new tics are so infrequent that they are hard to notice unless you really watch for them. Maybe they are gone again? I hope this is not a wax or wane cycle. We have never seen this type of cycle before he was always just getting progressively worse. While I am hoping they don't come back I realize they may.

 

Dylan's writing has always been bad. The only time I've thought it was good was the month following the first strep b antibody treatment. Then school let out and he is back to the same old writing when hschool got back in. I never thought his bad writing had any assosiation with his tics and ocd untill I noticed it get better all the sudden last school year. This is when I really started watching him and realized it was the repetetive writing that made it so bad. I always thought he just wasn't trying to write nicely. I've been trying to find a NAET treatment that will clear this up again because I'm so comfortable with them and I don't think they can be doing any harm. I don't think I should put all my eggs in one basket though so I'm trying to find other ways to help with the OCD.

 

When Dylan does his homework I sit by his side and when I see him copy over a letter I gently remind him to only write the letter once. He sighs erases the letter and says, " Sorry I forgot." I think this is constructive but I don't know what is going on inside him. This does increase the time it takes him to do his homework but I think it is helping.

 

Chemar, you mentioned suppliments for OCD. If tics are currently under control which suppliments are more specific to OCD issues.

 

Dylan's mom

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there are a couple of supplements that seem to be helpful for OCD and the different ones work a little differently so it is a case of finding the best "fit" for the individual. They all help to boost serotonin levels, which seems to help with OCD, anxiety, depression etc

 

the safest is INOSITOL, a B vitamin, best taken with combined B6, in the mornings

 

others that can be helpful are methionine, or better yet, samE

 

 

as well as

5HTP and L-Tryptophan ( these two are very effective, but a bit more potent and so should be used more carefully, especially in children, and starting at the lowest dose in the evenings, as they promote sleep too. Some people dont react well to them and so any edginess or bad reaction means best to not take it anymore.

They should never ever be taken with SSRI meds like luvox,prozac,paxil,zoloft etc as that can lead to serotonin spiking which is very dangerous!

 

 

St John's Wort (hypericum) is also found to be very helpful for some.

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