IVIG treatment questions.

[EmersonAilidh]

This is my first post on the forum. My name is Emerson Ailidh & I first started experiencing P.A.N.D.A.S. about five years ago. I am fifteen now, about to be a sophomore in high school in Texas. I apologize up front for my ignorance to a lot of what is talked about on the forum, this is my first time ever reaching out & being able to talk to anyone with experience with my condition.

 

Mainly, I wanted to ask about this new IVIG treatment. I first read about it on Dr. Kovacevic's website a few months ago, but I still have some questions. How available is it? Are there any risks involved? Do you have to receive it multiple times for it to be effective? & also, I read that it basically just doesn't work post-puberty. Is this true?

 

I plan on posting more & trying my best to understand everything better. I didn't realize that there was even a place like this to discuss experiences & progress until last week, in all honesty. I've been trying to figure out what exactly to say since then. More than anything, I want to contribute as much as I can because I haven't come across many cases that have lasted as long as mine. I'm just hoping to get & provide answers. Thank you. <3

[Fixit]

This is my first post on the forum. My name is Emerson Ailidh & I first started experiencing P.A.N.D.A.S. about five years ago. I am fifteen now, about to be a sophomore in high school in Texas. I apologize up front for my ignorance to a lot of what is talked about on the forum, this is my first time ever reaching out & being able to talk to anyone with experience with my condition.

 

Mainly, I wanted to ask about this new IVIG treatment. I first read about it on Dr. Kovacevic's website a few months ago, but I still have some questions. How available is it? Are there any risks involved? Do you have to receive it multiple times for it to be effective? & also, I read that it basically just doesn't work post-puberty. Is this true?

 

I plan on posting more & trying my best to understand everything better. I didn't realize that there was even a place like this to discuss experiences & progress until last week, in all honesty. I've been trying to figure out what exactly to say since then. More than anything, I want to contribute as much as I can because I haven't come across many cases that have lasted as long as mine. I'm just hoping to get & provide answers. Thank you. <3

 

Check your personal message board called PM

[EmersonAilidh]

Thank you for the advice but that's not my last name.

[peglem]

Those are some very good questions, ones many of us here grapple with as well.

 

How available is it?

It can be difficult to get IVIG covered by insurance and I believe it needs to be prescribed by a specialist- (immunologist, rheumatologist, neurologist). Finding a doctor who is willing to cooperate is tough. You can't just walk into an IVIG clinic and ask for one!

 

Are there any risks involved?

Yes, it is a human blood product. Here's a site that tells risk/safety info: http://www.cidpusa.org/ivig_complications.html

 

Do you have to receive it multiple times for it to be effective?

There has been quite a bit of discussion on this forum about this- not just how many it takes, but how do you define "effective". We're still in early post IVIG phase, so its too soon to tell for us. But my daughter has had 4 so far- the 1st 2 were pretty low dose and the 2nd one, especially made things worse. The last 2 (second one just completed last Friday) were the higher dose recommended for PANDAS and other autoimmune disorders.

But, I really think the answer to this question varies from person to person and has many variables- ie...state of immune system, severity of symptom presentation, etc.

 

I read that it basically just doesn't work post-puberty. Is this true?

I hope not. My daughter is 15 and has probably had this since infancy- we discovered the strep problem 5 years ago, but she really has not had adequate treatment for it until starting last fall. But, I think there are some people on this forum who have teens who have responded favorably to IVIG...hope mine turns out to be one of them. We have seen some improvement in symptoms so far but its been very up and down.

 

Thanks for coming here to post- we do have a few posters who have PANDAS, but most are parents of PANDAS. Its always great to get the perspective of the patient!

[EmersonAilidh]

Thank you so much! That was so helpful. The neurologist that I have been seeing for about five years now will NOT be swayed on the existence of P.A.N.D.A.S. so I don't think he would order that. :/

I haven't had any actual treatment, just lots & lots of pill regimens. Medication free for about six months though! So very happy about that.

 

I'm sorry to hear about your daughter! I'm fifteen too. I've had some pretty bad compulsions, one minor twitch, & a strep problem as far back as I can remember so we speculate that I got it really young too. I've only ever had two negative strep tests. I also NEVER have ANY symptoms. My throat & neck don't hurt, my glands don't visibly swell, I get no rash, I only know to go get checked when my friends start getting it. My pediatrician said she had never seen so much GABHs.

 

& thank you! That was my main reason for joining. A woman from the P.A.N.D.A.S. network showed me this forum & I wasn't seeing many posts from the actual kids! I figured it was because most of them were younger than patients like me & your daughter so I thought I might be able to contribute something.

 

I understand if this is a little too invasive of a question, but how much does the IVIG cost in all?? Once again, thank you so much!

[kimballot]

Welcome to the forum!

 

IVIG is quite costly - unless you can get insurance to cover it. I think it is about $1,000 for every 10 pounds of body weight, so it is more than $10,000 for most people to get it. There are some places that do it for a bit less, from what I have read.

 

If your neurologist does not believe that you have PANDAS, but you really think you do, perhaps you should have an evaluation by a doctor who specializes in PANDAS or is more knowledgeable about PANDAS. The pinned threads at the top of the page list doctors that people have found helpful - here is the link for it: http://www.latitudes.org/forums/index.php?...art=#entry35170

 

Are your parents supportive of you exploring the possibility of PANDAS?

[peglem]

Well, my daughter's IVIG's have been covered 100% by insurance, so I don't know the cost. She has supplemental insurance from the state that pays any medical cost left after our private family insurance has paid. This is because she is severely autistic- we think due to PANDAS interfering w/ her early childhood development. We are, w/ treatment, seeing snippets of that development occuring now and are hopeful that we'll see lots more.

 

So, you are doing well now, w/o any treatment?

[EmersonAilidh]

Peglem - I was doing well for a few months but I just recently took a nosedive. The only thing that I can think of is that it has something to do with the weather, because Texas summer has kicked in, which means 103 degrees every day. However, my twitches have actually gotten better. I rarely have vocal tics anymore, & when I do it's just a "bark" & nothing too terribly disruptive, & most of my motor tics have moved into my hands, neck, & legs. As far as other symptoms go, not so much. I've been experiencing Narcoleptic symptoms for over a year now, which is scary to say the least. That's good about your insurance though!

 

KimBallot - My Mom is completely & totally supportive. She doesn't understand it as well as she could though & often yells at me for being unsympathetic, moody, or irritable. I've tried to explain to her that my anger isn't voluntary but I don't think she believes me. It was a psychiatrist who told me that I had P.A.N.D.A.S. about three or four years ago, but I've never been officially diagnosed by a neurologist just because I can't find one that would. This forum has provided me with a list of Texas doctors though! So I plan on getting on that soon.

I plan on seeing a new neurologist soon. My main reason for staying with the one I see now is just because I have been seeing him for almost six years now & he's been around for it all. However, I'm finally realizing that that doesn't do me much good when he doesn't believe in my condition. But I am hopeful that I can get a diagnosis & some real help with these new doctors!