Update- Just Back From First IVIg

[Phasmid]

Just drove down to UCLA and home again for my ds12's first infusion. All went very smoothly- not one minute of waiting. In and out in 3 1/2 hours. Doc says infusion every 21 days for now, and keep him on azithromycin. He is getting replacement dose right now, so very low dose- about 25 or 30 grams in all. No side effects at all. His explanation is that he first wants to get antibody deficiency taken care of. Residual symptoms should, he says, clear up as well, but if not, he will use high dose later. After dealing with these symptoms for more than six years, it is easy to anticipate that this will be a magic bullet, and all will be just perfect with IVIg but I realize that might not be the case.

 

So far, some anger/rage stuff over homework that may be more than usual. Don't know if this happens so soon or not??

 

I will update, as we see things, on our results with this protocol. To remind, my son's problems now are trichotillomania (first ocd sign to show during acute episode in '04), VERY minor germ/contamination fear, ocd while reading, and severe anxiety.

 

Oh... doc told me that the abnormal movement which I described to him, that showed up in '03- the very first sign of problems- was most probably chorea! Nobody in six years ever mentioned that to me. What a shame.

Edited January 7, 2011 by Phasmid

[Fixit]

Phas...so glad it went well!!!!

Please do keep us updated.....and this could well be your magic bullet, magic bullet, magic bullet!!!!

[Phasmid]

yes, fingers, toes, every hair on my head crossed!!!

 

 

[peglem]

yes, fingers, toes, every hair on my head crossed!!!

Ooooh! I want a picture of that! Sending prayers!

[Phasmid]

Oh, I forgot I also have a question!

 

Since we have only done a first infusion, and since he has been OFF azithromycin for past couple weeks, I am tempted to wait before adding back the azithromycin because I want to see what impact the IVIg has. If I do both, I won't know what is working. Doc told me to start him back on the zith, but I forgot to ask about waiting a bit. He does have re-reading ocd (what is that called??) where he has to re-read sentences over and over. This does SEEM to improve on the azithromycin. Would you consider waiting a week or so?

[kimballot]

Thanks for letting us know. Please keep us posted! All the best to you! It will be interesting to see how this protocol goes since it is different from what others have done. Thank you for letting us know about it!

[browneyesmom]

I can't speak to your question, but so glad the infusion went well. I do want to add that my daughter, who generally reads about 3 years ahead of grade level, tested lower this past fall than she did last winter. She's never lost ground before - always gained. She also struggles with comprehension when she is ill. I believe I've read similar issues with other PANDAS kids.

[Phasmid]

Yes, until this Fall, he really only had challenges in math, since he has deficit in working memory/short term memory. I guess all our kids have this issue from what I read here. Tonight, as I was listening to him re-read aloud over and over, I could tell it was definitely a compulsion, and not comprehension issue, because he always stopped at the same word, and re-started at the same word. So, I asked him if he was okay, and he told me he was really frustrated with the "compulsion" as he called it. So he recognizes it as such. He asked if IVIg would make that go away. Poor kid. He used to have very poor comprehension, back when I consider him to have been "acutely" ill. It is much, much better now- almost 100%. But I don't know WHAT to do about the ocd except to read his textbook for him!?

 

 

[kferricks]

Glad the IVG went smoothly, and I'll keep my fingers and toes crossed too! About the reading, sounds like "just right ocd". Does he do it with every sentence, or is it randomly? If it is just randomly, maybe you could just read the word that he stops on to get him started again. (if he agrees). If its randomly, maybe you could read a couple sentences and he could read a couple sentences and then progress to paragrahs and back to a couple sentences. Sometimes, changing things up can help move them forward. Then eventually, when he is able to read a bit smoother, you both can work an ERPT. When he gets to that word. The one that makes him stuck. Have him stop and sit with it a bit before he trys to read it again. Before hand, ask him on a scale of 1 - 10 what he thinks his anxiety will be when he does the exposure. Then once he starts sitting with it, find out what the anxiety level actually is. After, occasionally ask what the level is until it has gone down by 2. (this can sometimes take awhile) I would only do this once or twice a day until when you start the level is much lower. hope this helps or at least lead to other ideas that you might be able to do.

[norcalmom]

Personally, I'd keep him on the antitbotics. Because if he gets strep tomorrow, you REALLY won't know what is working.

[amyjoy]

Phasmid, congratulations.

i concur with norcalmom, i believe that keeping on abx to prevent reinfection is recommended post ivig.

good luck good luck good luck.

ps

how on earth did you get insurance to cover that many ivigs??

[Phasmid]

Thanks everyone. This morning I DID indeed start the zith again, as his ocd last night was really bad and I would hate for it to get any worse. He cried and said he was "all messed up" and couldn't read anymore. It was horrible.

 

I don't know for a fact that our infusions are covered. Our doc just told me he rarely has trouble when he is treating specific immune deficiency. If he does get questioned by insurance, he told me he would "just write them a letter." He made it seem nothing to worry about. I do not think that he is indicating PANDAS as the dx, but rather specific defiency- pneumococcal antibody- poor response to pneumovax.

 

 

[browneyesmom]

To get our Ig infusions approved, our Immunologist listed DD11's as Primary Immune Deficiency Disorder... based on labs he did that indicated she was low on IgA & IgG.

[Phasmid]

Okay, I don't mean to blog our situation, but did want to give an idea of what is happening since IVIg yesterday. He was fine yesterday, last night, and this morning in terms of side effects. Last night and this morning the ocd was quite a bit more, and increase in anxiety too. He went to school and seemed like he would make it through the day. Near the end of the day I had to go pick him up when he called saying he had a bad headache! I FORGOT that the headache comes the NEXT day usually! He was, very surprisingly, able to take his math test (although teacher told me he couldn't finish one problem in time)! He came home, took Advil, and rested in bed. Since he woke up, about 3:30, he feels fine, and is in a great mood! He is in the living room with us, rather than hiding in the bedroom, or playing video games, smiling and talking to family members, which is a miracle in itself! So... so far, so good!

[browneyesmom]

I'm so glad he is feeling better today & hope he continues improving!