Does this sound familiar?

[bronxmom2]

My son is only manageable when I tell him exactly what to do, as in: you must sit in this chair and read until I tell you to get up. If he gets up and starts roaming around the house we immediately have fireworks, screaming, and tears as he does one inappropriate thing after another-- fill up water balloons in the kitchen when I've asked him 20 time to stop, spraying water into his baby brother's face, throwing the ball against the artwork in the living room. It's like he can't manage his own existential freedom for even a second and doesn't remember that he just got in trouble. I've had to cut him off from other children because there's always so much conflict, inevitably tears, and I just can't take it any more, I really can't. So I feel like I've had to put him on lockdown to keep calm and peace in the household. I can't imagine sending this child to school. The minute you give him any leeway, he goes bonkers. I've never been able to send him to camps, classes, etc that other parents take for granted, because very few people besides me can handle him.

 

He should be starting second grade next week. He is intellectually very advanced in some areas (reading) but definitely has attentional problems.

 

It took me a while to recognize some of his behaviors as OCD, obsessions with certain toys and an incredibly obnoxious insistence on new toys, incredibly persistent in his demands.

 

We do much better when we are out of the house, it's easier to simulataneously provide structure and content, so we go to museums, zoos, exhibits almost every day. Luckily we live in NYC.

 

It's gotten to the point where I literally cannot spend a day with my own child at home, I'd rather eat glass.

 

I'm going to get antibiotics next week (hopefully tomorrow) and know that will help... have to get that prednisone somehow... but what I'm seeing does not exactly match what others describe, I'm wondering if this sounds familiar?

[peglem]

I understand, unfortunately. Mine cannot go out, though, so we are imprisonned at home. She goes to a sped school, though, so at least I get a break there. Hard to tell if these incidences are a result of poor impulse control or actual compulsions. Regular discipline doesn't seem to work, doesn't correct the behavior.

 

Getting on prophylactic zith has helped alot. We've not done steroids. She has been on LDN for nearly 2 months now, and I have to say, I'm impressed with the improvement, though, her days on zith seem worse now. She's actually napping almost every afternoon now.

[T_Mom]

Hi Bronxmom--

I am so sorry you are going through this right now--We had times like that too and I will say the antibiotics/steroids helped bring us back to reality. The behaviors are so incredibly infuriating, and yet when we were going through it they were obviously a result of being "ill"-- as they got better with treatment. Once the inflammation is quelled I think you will see a difference. Are you homeschooling or does he go to public school?

[FallingApart]

Bronxmom,

 

I also was never able to spend a day at home alone with my child until right after the IVIG. It seemed torturous to me. We went anywhere and everywhere just in order to not be at home. But, since the IVIG (until this weekend) I see what other parents must get to enjoy - a day at home with their child(ren).

 

For us, this change did not happen until we did the IVIG. The abx and steroids were not enough for her.

[KeithandElizabeth]

We are the opposite in that we are completely stuck in our house. My son was supposed to start second grade this year and at the last minute I decided to homeschool because he is terrified of everything outside of the house. We are going in for IVIG tomorrow. We are so excited and so nervous!!

 

Bronxmom - do you have any upcoming appointment a doctor who is familiar with PANDAS. If not, I would highly recommend at least a phone consultation with Dr. K. He is so experienced with PANDAS and he gives you so much hope!!

 

elizabeth

[bronxmom2]

He is supposed to go to public school, but I want to homeschool... though by homeschool I guess really mean "never at homeschool"... we fight a lot so it might be a terrible idea.

 

He went to a highly sought-after public gifted school for K and 1st, but I pulled him out, it was too stressful.