IVIG 6-month update

[kimballot]

I have been posting monthly updates on my ds14 who had his first HD IVIG 6 months ago after major and minor PANDAS attacks since he was a baby. I have been posting updates each month as he had a major exacerbation that began 2 weeks after IVIG, and has slowly recovered beginning about 10 weeks after IVIG (http://www.latitudes.org/forums/index.php?showtopic=14308&st=0&p=117115&fromsearch=1entry1). He has been receiving HDIVIG about every 8 weeks, and has now had 3 total - fourth one due in a couple of weeks.

 

The big news here is that it looks like he is going to make it into high school, after failing/ missing the second half of eighth grade following the post IVIG exacerbation. He went to summer school - and made it in most days - and did well enough to move on. We have lots of supports in place in the high school and have reduced his load considerably compared to what I would have expected him to take... but he is still taking enough credits to graduate on time if he is able to get to school every day and do his work.

 

We started working with a CBT/ERP therapist as he still has problems with an anxiety/avoidance cycle that makes it difficult for him to complete homework and actually get up and go to school everyday if things are not "just so". The therapist is seeing these more as "habits" now - as opposed to true OCD. This makes sense as I also do not get a feeling that he is having the compulsions I've seen during exacerbations.

 

I really wonder if a child has a lengthy history of OCD and then has something like IVIG take away the OCD.... how do we train the person to think and act in a non-OCD manner?... this is my challenge for the next few months.

 

Anyway - thank you to everyone who has followed our story and offered encouragement. It is so nice to no longer be dealing with the depression and anger we had initially after IVIG... and DS has not had any illness or sinus infection since the IVIG 6 months ago, which is truly amazing for us! If you are wondering - in our case - yes I would do IVIG over again, but I wish we could have done it before puberty hit so he would have time to recover before high school.

 

I do not plan to post every month anymore. Hopefully I will post at the end of the school year that all is well and ds is moving on to his sophomore year of high school. We will see!!

[HT's Mom]

Hurray! As a mom of a 16 yr old ds, I completely get the high school anxiety. He was going along fine, all honors and tough course load, then boom, major pandas episode hit middle of his sophomore year. Grades and focus plummeted and I thought he'd barely make it thru the year. But he had his first IVIG in may, and hecwas able to pull it together enough to finish the semester with b's and c's. Not his best, but much better than it might have Been! We are at three months, and he seems great, but I am keeping my fingers crossed as we go into junior year that the stress and/ or germ exposure at school doesn't make things start up again.

 

I'm curious- who was your doc again? How did you get IVIG every eight weeks? Dr. K wants to wait three months efore even discussing, and now at least another month to see how he is after school starts. Ds actually wants to do another IVIG to try to get 100 %. He feels he is still "thinking too hard" and ticking a bt, altho we harrdly see anything.

 

Anyway, congrats. Love hearing success stories.

Edited August 20, 2011 by HT's Mom

[beeskneesmommy]

Kim - YAY!!! Excellent news and I wish you and your family lots of good stuff for the future!

[amy s]

Hi Kim!

 

Thank goodness things are turning around! I am so happy for your son and your family. My dd continues to do just fine, perfect as far as I'm concerned.

 

It has been 4 years this month (2007) that she had her exorcist pandas episode which lasted for 15 months until she had her only IVIg (Nov 2008). While we saw huge improvements very early on (days) it took the entire year to continue to see improvement to complete normalicy- (literally all the way until Nov 2009). I hope you will soon find that everything levels out for your son and family. It sounds like we are lucky to have had our experience and subsequent IVIg when she was at her young age rather than during adolescence. Of course I always worry and wait for any sign that things will come back. She turns 10 this month. I can't imagine her a teenager and going through what she did when she was little. But at least now I know what to do for her.

 

Thanks for the update and as always for sharing your story.

 

regards,

amy s

[Stephanie2]

Yay! Congrats! Maybe you can add a few anti-inflammatory supps to nix the rest of the OCD! My boys, when they come out of pandas, they come out 100%. No left-over habits, but maybe cuz they are younger...?

[Dedee]

I am so glad to hear some positive news from you. PANDAS parents approach the school year with as much anxiety as the children. I am praying that things continue to go well for him at school. Good luck with your next IVIG. I think of you often and keep your family in my prayers.

 

Dedee

[nicklemama]

I hope you'll reconsider and post monthly updates.

 

Amy- Your post really gives me hope. We are 3 months post IVIG, doing well. We just saw Dr K today and he is pleased but told us our DS is still a work in progress and it will take the full yr, providing we have no setbacks.