IVIG has totally triggered more symptoms

[faith]

by immune deficiences, I meant that some here have done immunological work ups and find that they have some deficiencies, but seems most of those are Dr. B's patients, as he is an immunologist.

 

I wonder about that, because I wonder if the treatment for PANDAS with IVIG (or the outcome) is or should be different for those that have immune deficiency as opposed to those that do not. I don't know, I'm just so confused as to all this, so I'm trying to see what other people's experiences are. We've not had any IVIG, my son has mostly tics, his other issues are not as prominent as some here. I think I can totally see going ahead with these treatments for the more severe of the kids, but I think those of us who are functioning have a wait and see attitude, and maybe even a 'if it ain't that broke, don't try to fix it" ?... I have to say, I am really confused and unsure about it all...

 

thanks for sharing your experience.

 

Faith

Edited April 3, 2010 by faith

[Fixit]

He had anger, irritability, severe OCD, Adhd, regression in social age, regression in hand writing all before IVIG. OCD came on suddenly a year before IVIG. Anger was added a few months before IVIG (could be hormonal as he turned 13). Anger, I'm told, is a form of depression (and who wouldn't be after what he's been through - because of OCD he cannot be around around friends and he is very social). None of these things got worse with either IVIG. With first, he got better for 2 months, then began to get worse. This time he is not getting worse. It's just he had a few good days with OCD progress, but now last few days we're seeing no progress. Not sure what you mean by immune deficiencies. He has had asthma since a baby and mutiple allergies.

 

has ivig helped with his allergies...i heard that is possiblitiy?

 

so nothing is worse after ivig.....maybe a little better but you have platueaed?

maybe that is your sawtooth...an then he will start moving along again???

[Fixit]

I wish it was easier, but after a year of monthly IVIG's this has always been the normal pattern for my son. Especially tough after the first 3 days, somewhat related to receiving IV steriod/benadryl, prior to infusions.. My guy usually doesn't begin to improve until the second week. Hang in there...can't tell you how many times I felt like giving up, believe me...it's monthly. Seems like the rollercoaster will never end....but he is slowly improving, unlike most of the kids on here....everything is slow for us.

Best wishes to you!

 

are things getting better and better....meaning...he got 10% better the 1st time....5% better the second 5%better the third,...so by this tme he isnow 20 % better over all...

 

how many more do you have planned??

how old is he

i guess insurance is covering this???

where are you doint this(at home? what state?)

and what are his issues??

[Nita]

I completely understand that. I too was always reluctant to treat, thinking he would get better. He had bad facial tics when he was nine and was diagnosed with Tourettes by a neuroligist

But then, they slowly went a way (lasted about 4 month during a stressful 4th grade - teacher who punished him a lot for his ADHD behaviors). Then he seemed so much better - though looking back his ADHD behavor was increasing along with writing skill regression. Summer of 6th grade he had sudden onset, overnight OCD. One day he was fine, the next he was totally debilitated, everything was unclean. He struggled back to almost normal, only to hit even harder the following summer. OCD returned with a vengeance within 2 weeks time, this time with anger and longer rituals. No one told me about PANDAS, of course. I wonder how much better things could have been had the medical community been more informed.

 

 

by immune deficiences, I meant that some here have done immunological work ups and find that they have some deficiencies, but seems most of those are Dr. B's patients, as he is an immunologist.

 

I wonder about that, because I wonder if the treatment for PANDAS with IVIG (or the outcome) is or should be different for those that have immune deficiency as opposed to those that do not. I don't know, I'm just so confused as to all this, so I'm trying to see what other people's experiences are. We've not had any IVIG, my son has mostly tics, his other issues are not as prominent as some here. I think I can totally see going ahead with these treatments for the more severe of the kids, but I think those of us who are functioning have a wait and see attitude, and maybe even a 'if it ain't that broke, don't try to fix it" ?... I have to say, I am really confused and unsure about it all...

 

thanks for sharing your experience.. But

 

Faith

[Fixit]

I don't know if caught this on my other post but...

 

 

has ivig helped with his allergies...i heard that is possiblitiy?

 

so nothing is worse after ivig.....maybe a little better but you have platueaed?

maybe that is your sawtooth...an then he will start moving along again???

[Nita]

Now that you mention it, he only had 2 mild asthma attacks this winter and no seasonal allergies this spring. He did have allergy shots for 6 years, but those were stopped in 2008 and he still had some allergies over that winter/spring (before IVIG). Guess I've been so overwhelmed with all his other issues, I didn't stop to be thankful for that. Now his mlk allergy (severe - requiring EPI shot) is still there, but I think the cause of that might be different. Yea, hope he does start getting better. I'll keep you all posted.

 

 

I don't know if caught this on my other post but...

 

 

has ivig helped with his allergies...i heard that is possiblitiy?

 

so nothing is worse after ivig.....maybe a little better but you have platueaed?

maybe that is your sawtooth...an then he will start moving along again???