IVIg or not...

[Phasmid]

I know I have posted this question before. But, please, one more time-

 

My ds12 is doing great overall. Doc switched him from azithromycin prophylaxis to pen vk. While on pen, he got another sinus infection during which a few symptoms surfaced again- eyelash/brow pulling (yup, they're gone again), night waking/terrors, poor mood, vocal tics that were triggered by watching t.v., and some obsessiveness with his weight. Other than these minor issues, he is doing great in school. Obviously, the trichotillomania is NOT a minor issue, but as far as behaviors, things are minor.

 

At our last conversation, doc said if he relapsed while on penicillin he would consider IVIG. I have, after six years, come to the point where if doc will order IVIG then I would be willing to try it. I don't know if trichotillomania has ever responded to IVIG, but in my opinion it is worth a try before going to long term psych meds. The NAC MAY have helped but if it did, the minute he went off, the problem just came back in full force.

 

What would you do? I have such a hard time deciding what to do since his symptoms are so mild relative to all the stuff your kids experience.

 

 

[norcalmom]

I've always wondered why this one OCD habit has its own name and is considered different...isn't it all OCD? My child has two OCD things - that don't fall on any chart, don't have any name - but they are OCD. Ivig has helped us tremendously in many ways.

 

I spent along time trying to find "looking into the sun"...my child's compulsion...and someone else out there doing exactly the same thing. After a year I found one other kid that did this at one time in his illness. Personally don't think it matters if they are using profanity, praying obsessively, washing their hands, or pulling their hair out.

 

If he has strep connection, illness link, any immunological defeciencies - or high cunninghams test...I'd say its worth doing. It is effecting his life. And I too, thought my child was "minor" relative to some of the stories I'd heard....but for some reason it seems worse when we hear if from someone else sometimes, because we have gotten used to it. We have adjusted our lives, and our expectaions for a "good day" or week or month. If you comes back normal on all step, myco, lyme, immunity and cunninghams test...that is a harder question. We didn't have anything but the cunninghams test, but don't have lyme tests back. I in the camp that this is autoimmune disease with several triggers - so the cunninghams test is what I'd spend my money on if your kid has had it for years.

 

Best of luck with your decision...I know I nearly gave myself a nervous breakdown trying to decide. In the end, it was no big deal, and wished I had done it earlier. Now debating another ..to see if we can go from 85% to 100% !

[JAG10]

My dd10 WAS a skin/scab picker before IVIG. Her CBT said it was very similar to trichotillomania and even used some of the same tools. Well the CBT didn't do much but cost a lot of money, but the skin picking is completely gone after one HD IVIG and is the most obvious and noticeable improvement in my dd. She no longer scratches bug bites til they sore and bleed, then picks at the scabs in a similar fashion. She doesn't even pick at her nails or cuticles anymore. It was BAD, she went to the ER twice for ulcerating sores, but since May 2010 IVIG-NOTHING, completely gone and it had been an issue for 4 years.

[Joan Pandas Mom]

I think if it is PANDAS it is worth a try. I am kicking myself for not having IVIG years ago. Good luck in whatever you decide and hang in there.

[pathfinder]

I am also kicking myself for not doing IVIG years ago. It made all the differences in my son's life.

[tpotter]

I completely agree. We've had IVIG (twice now, but separated by 1 1/2 years) and 1 PEX. The PEX worked immediately, and long term. But, after having the IVIG 3 weeks ago, my boys seem to be in a much better place, overall (although it's a bit hard to know right now, because we are also doing Lyme tx, and they are herxing...especially my 15 yo, who tested the least positive for Lyme.)

 

I know there's a lot of questions about whether or not to do IVIG, especially when there's also Lyme, but my feeling is that there is an underlying autoimmune issue that we have to deal with. We can give all the abx in the world, but unless we give IVIG, too, another infection will just take it's place. And, yes, we have to also treat the infections. This is just my personal opinion, but that's also what you asked for.

 

I also think it's important to be prepared to give more than one IVIG, and you might have to fight insurance. Some of us have done it successfully, and I know that I couldn't have done it if I hadn't had others on this forum sharing what they had done to get help. Hopefully, too, once the white paper comes out, there will be more insurance companies changing their policies.

[EAMom]

IVIG is something that also took us long time to get to...in hindsight, I wish we had done it sooner as it turned out to NOT be a big deal (compared to dealing with PANDAS, even relatively "low grade" symptoms)!

[Phasmid]

Thanks everyone. Went to appt. with doc M. yesterday and was surprised to hear him recommend IVIG for ds12 for the residual mild symptoms (mild in comparison to yours). We are hoping that one treatment will help him with the trichotillomania, and the chronic infection which he seems to think my son has in his gut and sinuses. It comes and goes, but he can't keep from soiling and doesn't seem to care when it happens, and has no interest in changing clothes! It has been a maddening 5 years, with those two issues alone. We have had every lab test known to man, g.i. xrays, scoping, various antibiotics (which he does respond to amazingly well, but all comes back when he goes off). My son's ocd is minor at most, with mostly obsessions and avoidance and reassurance. He does have night fears. Yesterday I couldn't get him to take a shower in a hotel tub because of germs. But, he has no handwashing issues. Still trying to get him in the shower to leave for school in 30 minutes!

 

So, doc made infusion sound like no big deal, and very reasonable in light of remaining problems. And he isn't even a doc who treats many PANDAS cases (only has five or so). After trying all else, and not being able to stay on antibiotics because of his gut issues, we move on to IVIG. I asked if he thought we needed to do labs, or last stool culture and sinus scan to make sure no active infection first, and he said no, that IVIG would actually help clear infections.

 

Thanks everyone for your help and support along the way. I will update when the time comes!