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bronxmom2

Update on my son

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Hi all, just wanted to give an update on my 9yo son. I hope it will give some hope to you if you feel like you're not getting anywhere. 3 years ago, my son seemed to slip away from me in a haze of delirium, only to come back when he had antibiotics, only to slip away again after they stopped, only for me to realize he needed them permanently, and then to realize that even with full-strength antibiotics he was not the same as before, he could not be around other kids without going bananas, he'd probably had strep colonized in his body for years, horror of horrors, he stopped being able to count, etc.

 

After PEX, after 5 or 6 IVIGs and much gnashing of teeth over whether it was doing any good at all (and finally adding a small dose of Strattera)...I would say that today my son is 100% totally fine, in fact better than fine. He is amazing and I am extremely proud of him and enjoy his company immensely.

 

He was out of school for years, and went back this year. We were lucky to get an incredible teacher who appreciates my son and best of all creates ways for the kids to write via the computer (a class blog) that do not feel like "accomodations"-- my son would have rejected being singled out, but all the kids are writing on computer so he goes with it. This is a kid who until this year did not write. ANYTHING. Would completely freak out and panic at the site of a blank page. Hysterics. Yesterday I casually asked the teacher how he was doing, especially with the writing, and after a moment's pause he said, "I'd say he writes like an intelligent adult."

 

This is incredible. He will always be quirky, messy and highly disorganized, he has definitely come out of this with his faculties intact and with a real will to be his own person. I might even go as far as to say he is stronger than he might have been before, because he is compassionate. And now I know to be careful with him.

 

Anyway sorry if this seems braggy, but you guys will permit me.

 

I recommend a teacher who can let kids write on the computer without making the kid feel "weird." (My kid is weird enough.) Also, I was reading the conversation about the BBB and I think it's definitely important to try to cut the stress your kid experiences, any way you can.

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That is so great! I am one of those with my 8 year old, wondering if it is every going to work. He has had 5 IVIGs. When did you start to see real improvement that lasted? Did the IVIGs help?

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I believe you will. Because you've already proved that you won't rest until you do. You have become hyperalert to every sign of trouble, but one day you will start to breathe a little easier.

 

It's like raising a toddler... watching them every second... then one day you realize that you're taking a long, hot shower and your 3yo is playing somewhere and you're not even worried about it.

 

Anyway I believe you'll get there because you won't stop until you do. As Dr. Latimer said to me (with a sly wink): "The PANDAS crowd is very persistent."

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He had his last IVIG in Feb 2011, by the end of the summer he felt solid. So.... 7 months?

Which is just exactly what they tell you, but you don't quite believe because you can't quite see it as it's happening.

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