Post IVIG almost 4 weeks...

[ExpatMom]

Hello to Everyone,

Some of you may remember a couple of my previous posts. I have been "MIA" for a bit, as I finally diagnosed my 10 year old son with PANDAS, and traveled from Saudi Arabia to Chicago for IVIG with Dr. K, all with in a short time frame. My son has been going through a severe exacerbation of what we now believe is PANDAS since he was sick in April. Dr. K recommened IVIG and we decided to go for it. The IVIG was done on Aug. 12 and 13. My son was very sick afterwards with severe headache, vomiting etc...and then we made the 15 hour flight home several days later. The first week post IVIG was rough and since my son is petrified of vomiting and he vomited several times post IVIG, his anxiety level was very high. However, after about a week, he had a great improvement in all his symptoms from OCD to anxiety. It was the best I have seen him. My 2 week update with Dr. K was very encouraging. However, wouldn't you know it, a couple days later, my son started having panic attacks again. His OCD symptoms are still better than before, but his anxiety is very high again. This has been going on for about 10 days now. He has had a couple days during the 10 days that were a bit better. My question to all of you out there is this....what was your experience post IVIG? I know turning back the pages is normal, but when should you see sustained improvement?? I am trying to remain optimistic, but getting worried. We are a few days from the 4 week marker now. Any advice??

[nevergiveup]

Same as u, first two weeks improvement,then odd behavior and odd tics, my dd also had side effects from ivig, didn't see improvement until approx. Eight weeks.She did well until about 20 weeks post when she got H1N1, then deteriorated pretty fast again.quote name='ExpatMom' date='07 September 2010 - 06:52 AM' timestamp='1283856768' post='82820']

Hello to Everyone,

Some of you may remember a couple of my previous posts. I have been "MIA" for a bit, as I finally diagnosed my 10 year old son with PANDAS, and traveled from Saudi Arabia to Chicago for IVIG with Dr. K, all with in a short time frame. My son has been going through a severe exacerbation of what we now believe is PANDAS since he was sick in April. Dr. K recommened IVIG and we decided to go for it. The IVIG was done on Aug. 12 and 13. My son was very sick afterwards with severe headache, vomiting etc...and then we made the 15 hour flight home several days later. The first week post IVIG was rough and since my son is petrified of vomiting and he vomited several times post IVIG, his anxiety level was very high. However, after about a week, he had a great improvement in all his symptoms from OCD to anxiety. It was the best I have seen him. My 2 week update with Dr. K was very encouraging. However, wouldn't you know it, a couple days later, my son started having panic attacks again. His OCD symptoms are still better than before, but his anxiety is very high again. This has been going on for about 10 days now. He has had a couple days during the 10 days that were a bit better. My question to all of you out there is this....what was your experience post IVIG? I know turning back the pages is normal, but when should you see sustained improvement?? I am trying to remain optimistic, but getting worried. We are a few days from the 4 week marker now. Any advice??

[ExpatMom]

Thanks for your reply. So your child didn't show improvement again until around 8 weeks? That is encouraging. I keep telling myself to remain optimistic, but it is hard sometimes. I want this treatment to work so badly, mostly for my son's benefit, that I am trying not to get my hopes up too much just in case it doesn't, but at the same time I want to remain optimistic. It really helps reading about the experiences of others. Thanks to everyone