I don't think it helped. Ughhh

[melanie]

Hi I guess I missed alot I just went to bed last night.He woke up ok.I didnt tell him we were doing an IVIG afterschool ,didnt want to stress him out all day. Its a home infusion hes had many many.Dr wants to continue with it..

 

The neuro is one of the best in the world.Knows Pandas and autism..I trust him.Dannys autism is at a high funtion.Has many issues but we believe are pandas relatedOCD, Tics etc.

 

I love this site if it wasnt for the women and some men here I wouldnt have made it through last week at NYU. I wouldnt have known as much as I do or been able to get the services danny needed.IE: IVIG and PEX and the other many interventions we have tried..

 

I always answer questions when people IM me .I have spent time on the phone over the past years with many people on this site. I would love to meet all of you and give you a big hug.

 

I just am growing tired of not getting the results I want.I am a big baby.I know I am blessed ,being able to provide this help for danny.Many here can not get insurance to pay .

 

Ill keep posting and PLEASE respond to me it helps so much.

 

Melanie

[dcmom]

I think a healthy debate/ argument is fine.

 

It is silly to get mad and say goodbye- that you are not posting anymore. We are all adults here.

 

Most of us are stressed out mom's, trying to help our kids.

 

We need to keep in mind that PANDAS16 is the child- just all grown up now. Her view will be totally different. We have a lot to learn from her. I could concur with her, that my children have NEVER displayed any hallmark autistic characteristics, even during the worst pandas flare. Both girls are very compassionate to others. We have a few friends with autistic kids, and my kids are great with them. However, honestly, it would hurt them to have pandas compared to autism. They are still developing their sense of self (aren't we always). They don't like having something "different" about them. Although frankly, no one would ever guess they are dealing with any "issues".

 

I do think a full remission is possible. I agree that there are learned behaviors, and do feel that those will take longer to subside, and take work to do so. However, the residual stuff my kids deal with (right now) are not really out of the realm of "normal". ALL people have "issues", most kids have "issues" (anxiety, impulse control, learning issues, add, physical problems, divorced parents, sick parent or sibling, etc). I try to put it in perspective to my kids- everyone has their own crap to deal with, you deal with it, and you move on.

[SSS]

Melanie, I am sending you prayers and PV's-----

I am not the most patient person in the world (understatement)

and I remember all the incredible stress leading up to our first IVIG,

and afterwards, within days, I couldn't help it, after all we'd been through to get it,

darnit I wanted immediate gratification, and all the rages to stop, and they weren't right away.

 

Some brilliant person on here said: Waiting for improvement after a big treatment is like

waiting and watching the grass to grow, and then someone comes along and mows it. (the setbacks)

 

You hang in there, you both have been through a lot!

[wornoutmom]

melanie: I can't imagine the stress you and Danny have been under this past week. You both need some time to recover just from the experience of teh hospital alone. This was major treatment and it would be normal for both of you to be anxious, depressed, and a bit traumatized. I would encourage you to give it some time and a return to "normalcy" and then try to evaluate if you see any of his PANDAS symtpoms improved. Meanwhile, try to take care of yourself and recover. I have to say that I disagree with PANDAS16 in that learned behaviors, no matter how long they have been around, can be unlearned/replaced and developmental growth can occur, just may be delayed with our kids that have been sick so long. They may never get back experiences they missed because of the illness, but they will get there in time. The brain is an amazing organ - look at stroke victims who learn to swallow and talk all over again. New connections can be made to override the old ones. It has been 4 long years and my son still struggles somedays with what I call "auto messages" that have been so ingrained in his mind his brain just thinks them before he can get out a thought of his own. Therapy has helped a lot with this, in that he is getting better and better at recognizing these repetitive anxiety thoughts are just default brain wiring from all his years of being sick, and once he recognizes this he can not react emotionally to them, and replae them with his OWN thoughts. None of this work could have occurred before treatment, and it has been lot of work to get as far as he has, but he is getting there one day at a time. Danny will get there too. It may not be overnight, but I truly believe all you have done for him in getting him treatment will set the stage for him to recover and live a good life. you are a wonderful mom and he is amazingly blessed to have you.

[PhillyPA]

I don't know what you guys are talking about? I never said that I wasn't coming back and that this would be "my last post". Clearly, you didn't read my post correctly....Perhaps you should re-read it. Because I would never edit a post after there had been discussion on it. That would be dishonest and sneaky.