Thoughts, Tips, Experiences with IVIG - PANDAS

[Sham7rock]

My 13-year-old son is very close to having his first IVIG infusions. I'm very nervous about doing IVIG as I have had it for my autoimmune condition and I had a bad reaction. I am very IgA deficient and even though I got Gammard SD washed of IgA there were still trace amounts and I had a serious reaction. Needless to say, my personal IVIG reaction is making me very nervous for my son. His IgA levels are only slightly low so hopefully the IgA aspect of reactions is a non-issue for him.

 

I'm looking for your feedback on your experience with IVIG. How did your child do during the infusions? After the infusions? What side effects? Did your infusion people pre-medicate with hydrocortisone, analgesics or antihistamines to try to preempt side effects? Were you at home, outpatient or in- patient?How many days in a row did you go and how many hours each day? (Our Dr. Wants us to do 4 days in a row and I'm not sure how many hours each day yet.) Are there any questions you wish you would have asked before you proceeded? Are there other treatments you would have tried before doing IVIG? How many infusions did you have to do before results? How did it go getting your insurance to approve and pay for IVIG? We are Medicaid.

 

When you give feedback it would be great if you could say the age of your child and what city and state you are from.

 

You can read below if you would like more information about our experience these last 4 months with PANDAS . . . .

 

I posted a while ago (Feb.) on this forum and then got so overwhelmed with all that was happening I had to take a break from this forum. Things have been crazy with trying to figure out how to get my son the treatment he needs and keep him occupied now that he has been out of school for 4+ months. (All he wants to do is watch TV and play XBox because he feels so rotten. He used to be a huge reader and now says he can't concentrate and doesnt have the energy to read.) I'm also a single mom with autoimmune issues of my own and we have to move to a new home in 2 months. PANDAS sucks beyond belief and it blows my mind there are not more providers who are willing to step up and help - especially here in Seattle WA.

 

I so appreciate the nice responses I got to my questions when I posted back in Feb. I also got a little overwhelmed reading the forum and had to take a break and just focus on what was in front of me.

 

I never did end up seeing Dr. Vlcek (a Seattle neurologist with a bad rep) - I read enough reviews to know it was not a good idea. And as a few of you suggested (knowing it is so hard to get a PANDAS kid out of the house) I decided to cancel.

 

Thank goodness for Dr. Gbedawo - she is fabulous! The only one I've been able to find in the Seattle WA area to really pick up the ball and help with PANDAS symptoms. My son is 13 and major symptoms started late Nov. 2016. It took a little over 2 months to get into see Dr. Gbedawo, but it was worth the wait.

 

My son got overwhelmed at the first apt with Dr. G so I suggest you bring someone with and when you get to the technical parts of how to treat etc. you have your child leave the room. Bring 3 adults total if you can so 2 can listen and take notes with Dr. Gbedawo and the other can take your kid off to hang out elsewhere. Its just too much info for a kid and it really freaked my son out.

 

He is doing somewhat better on prednisone, antibiotics and lots of supplements. Working toward getting IVIG soon. He's had severe anxiety, emotional lability, sleep issues, low frustration tolerance leading to rages, regression and temper tantrums, fear at night, not feeling well but can't explain what doesn't feel good, extreme skin picking till fingers bleed, food issues - wont eat (says food is bad/rotten) or super hungry now that he is on prednisone. Hard to say on handwriting deterioration at he was previously diagnosed with dysgraphia & dyslexia. (I now wonder and speculate that we may have been dealing with simmering PANDAS since 1st grade and "fell off the cliff" so to speak in 7th grade.) Worst part are the evening rages - which thankfully have stopped on 30-40 mg prednisone. He has not had any tics. OCD issues just seem to pop out briefly surrounding cell phone and picking.

 

Cunningham showed high Anti-Dopamine 1:4000 and high Anti-Tubulin 1:2,000. CaM Kinase was 113 which is considered normal but still above mean. Streptozyme 1:400, ASO 1290, Anti-DNASE B Titer 815 (after 2 rounds antibiotics.)

[bobh]

Hi. We haven't done IVIG, but one of the advantages of this group is the ability to search through lots of related discussion going back many years. I find the search function works better than facebook's search for some reason.

 

Once in this particular forum, type IVIG in the search field (which is near the top right, on the same level as the ACN latitudes title). There are a lot of hits listed for IVIG!

[Gpookie]

Best thing we ever did. Nothing to be nervous about.

 

Do a search as described above.

[MC2]

Sham7Rock,

So sorry to hear about your son's experience, not to mention you having this on your hands as a single parent. My son (9 yrs old) has had nearly identical symptoms. After three months of cognitive behavioral therapy and SSRIs, we realized that there was something else terribly wrong (he also had dialated pupils, light sensitivity and couldn't stop moving, and those same bedtime fear/rages were simply awful - the entire family was in a state of panic/stress).

 

We have not had IVIG, though I have heard that it works for many (though in some cases it is needed every 4 weeks - unclear for how long). In our case, after about 5 weeks of Augmentin which didn't do much, we did a 5 day predisone trial (60mg/day) which helped a little, and then we started with high dose steroid (solumedrol) infusions (3 infusions in a row, spaced by four weeks). He is also on Plaquenil (usually a rheumatoid arthritis drug) and remains on antiobiotics prophelaxis. My understanding from our doctors (Stanford team) is that they have had varied success with IVIG. Interestingly, they say IVIG may work better in certain parts of the country than others, and that they used to have more success with it (not clear whether this is because of different strep strains or the donors who are giving the immunoglobin your child is getting). I understand that there are many doctors who give IVIG together with Solumedrol, so that is another thing to ask about. What I gather is that the steriods need to be high dose/hit the immune system pretty hard (the idea with the plaqenil is to tamp down the immune system).

 

Sorry this isn't really directly responsive to your IVIG question, but (a) I thought it might be helpful for your son's case, and ( I wanted to see what others are experiencing with the IVIG versus high dose solumedrol approach. I think Stanford will at some point publish on this approach, but if it can help someone else out there before then... My son (three steriod treatments in - and note the reduce the number of days after they see some good progress) is vastly better. We aren't 100% back to normal, but his personality is back and we in such a better place.

 

Hope the same will be true for you soon.