4 mo. post IVIG

[chrisw]

Hi All,

First, an update. My 9yr. old son had IVIG in April of this year. He continues to do very well. Some days are better than others, but overall on most days, he is 90% better than pre-IVIG. We have had some minor symptoms crop up following times when I think he may be fighting something off. He had a minor sore throat for 2 days with an ulcer in his mouth and he also vomited once. No fever but just didn't feel very good. Since then, he has had some anxiety at bedtime, with nightmares around the same time every night. The nightmares went on for about 3 weeks and then got better. He still has the nightime anxiety (doesn't want to go to sleep without me in the room) but that seems to be decreasing also. None of this is a problem during the day. He also has had some very minor tics on and off since then, but they are gradually getting better also. I did double up on his abx. for 10 days, which did seem to help. He is enjoying football this year, whereas last fall he was an anxious mess. He is much more confident and is not afraid to tackle at all. In fact, many of the other boys are afraid to go against him. That really is progress. I am nervous about school starting on Monday, as his separation anx. before school was his most difficult symptom. I feel like it should go well, but it is so hard to fully relax after what we went through last year. I'll be praying alot before Monday.

 

On a different note. I did take him to an Immunologist and request some tests. I'm not sure what to think of the results, and the Immunologist was rather vague when he spoke to me on the phone. He said my son's IGG subclasses total was in the normal range, but his IGG1 subclass was below normal. I asked him at what point he would treat this (IVIG) and he said if there were recurrent serious infections. My son appears very robust right now, but last year he was a sickly mess. His medical records are at least 2 inches thick because of his history of repeated illness. Not sure he "got" this part. From what I've read, IGG1 deficiency is the most rare of all IGG subclass deficiencies. He also did not acknowlege that this might be or might have been a problem for my son. He also drew strep pneumonaie titers ( not strep A). He wanted to immunize my son before he did this, but when he saw my face, he said he would draw them without. My son failed 9 out of the 14 strains. I'm wondering if this is a valid test because he didn't get the immunization to see how his body reacted. If it is valid, I'm concerned. Wondering if anyone out there has had these tests, and if Shaesmom had her daughter immunized before titers were drawn. Also, the recent study by Columbia with the mice mentions IGG1. Can anyone out there who is smarter than me shed some light on this? The Immunologist seemed like he wanted no part of all this and I could tell he was iffy on PANDAS. Thanks for any input in advance. Sorry is this is rambling.

[peglem]

My daughter had the strep pneumonae test. They drew titers before immunizing to get a baseline. Then they immunize and retest after a few weeks. It gives them a measure of the immune response. My daughter had a very week response to the 1st immunization, so they repeated it and the second time she had a good response. They said that they had stimulated her immune system and it was working now. Its not. I'm not sure if they checked IgG subclasses or not.

[chrisw]

Did your daughter have any reaction to the immunization? Is this what is considered a "live vaccination" or immunization? I would do it if I wasn't terrified that it would kick start his PANDAS again.

[peglem]

Did your daughter have any reaction to the immunization? Is this what is considered a "live vaccination" or immunization? I would do it if I wasn't terrified that it would kick start his PANDAS again.

 

No, its not a live vaccine and it doesn't have any "extra ingredients" besides saline. I looked it up before allowing her to get it. I don't think she had a reaction, but we were in the midst of episodes, so who knows. One of the reasons we ended up at the immunologist is because my daughters strep would not clear, even with antibiotics. Her pcp wanted to know why. Even without abx, her immune system should have been able to get over it. Also, she wasn't having an immune reaction (no inflamed throat, fever)-just behavior. The immunologist did not want to give the vax while she had strep or while she was on abx, so both times we got her checked for strep the day before the vax, and both times we had to reschedule for a day or 2 after the abx course was finished. At the time all this was going on we were also seeing some other specialists for other issues...That year she probably had an average of 3 appointments/week.

[ShaesMom]

Hi Christie,

 

Shae received the Prevnar vaccine four times between the ages of 2-3 during her regular vaccination schedule. Our Immuno felt this was enough and did not want to revax her. He started her on monthly IVIG based on her failing the Pneumo titers and was thinking he would continue the monthly IVIG for maybe two years and then revax her. At this point, I'm not in any hurry to have her revaxed--I want a 100% guarantee that there is absolutely no connection between strep pneumo and strep A. I can't take a chance with her Pandas.

 

Also, she received her first vax shortly after her 2nd birthday and we now think that her first Pandas symptoms started shortly afterwards--she started eliminating foods from her already restricted diet. We had her tested for celiac's and several other food allergins at the time. All tests were negative. She never did add any of those foods back to her diet.

 

Call me.

[ShaesMom]

When did you have the blood work done? It is my understanding that it takes about three months after IVIG to get accurate results.

[chrisw]

Happy update!!! Today was Jacob's first day of school in 4th grade. He was nervous, but not resistant at all (unlike in the past when he would run from teachers and have to be wrestled into the school by 2 or more people). I walked him to his classroom, and he went right in!!!! I felt like he would, but because of the nightmare we had last year I was anxious. I am SO relieved! I think I'll email Dr. K and give him the good news. So glad I can share here.

Christie

[ShaesMom]

That's awesome Christie!

[Worried_Dad]

Happy update!!! Today was Jacob's first day of school in 4th grade. He was nervous, but not resistant at all (unlike in the past when he would run from teachers and have to be wrestled into the school by 2 or more people). I walked him to his classroom, and he went right in!!!! I felt like he would, but because of the nightmare we had last year I was anxious. I am SO relieved! I think I'll email Dr. K and give him the good news. So glad I can share here.

Christie

 

That's wonderful news!!! Things aren't going so well for my son right now, and uplifting updates like this from other IVIG'ers really makes my day!