DOES IVIG REALLY EVEN WORK?

[Phasmid]

Is there a general consensus that the longer child has been ill, the more likely he/she is to need IVIG? My son's major episodes were about one month in 2003, five or six months in 2004, and four to five months in 2009, with more vague behavior and attention stuff in between. So, that spans 7 years.

[EAMom]

Is there a general consensus that the longer child has been ill, the more likely he/she is to need IVIG? My son's major episodes were about one month in 2003, five or six months in 2004, and four to five months in 2009, with more vague behavior and attention stuff in between. So, that spans 7 years.

 

That's my feeling. Maybe that is why Sammy did well on just antibiotics? He had OCD for about only a year b-4 finding out about PANDAS. I would think a child that is diagnosed very quickly (a couple of weeks) into their first episode would great if treated aggressively with antibiotics....esp. if their immune system is good and they are allowed a good time period afterwards without further strep exposure or illness.

 

My dd on the other hand, had been affected by PANDAS (low grade, undiagnosed) for at least 3 years (possibly longer) before she became "full-blown" and we found out about PANDAS/started abs.

[Phasmid]

Do you think his issue was muscular coordination? Vision? Focus? How old is he? I can see that having better focus would help a child do just about anything. And many parents report vision problems, so maybe it was his ability to watch the ball? Great news anyway. Mine is a BB player too!

[Phasmid]

Anyone have Anthem Blue Cross, and have IVIG covered? What seems to be the required set of symptoms or diagnoses to get this covered by insurance?

[momaine]

Are you sons selectively immune deficient to just strep? What test showed the immune deficiency?

I am teary with happiness for you after reading your post. I hope I am in your shoes soon.

Angela

 

 

I haven't posted an update in a couple of weeks, but wanted to add my 2 cents in here. A month ago my children were what we considered to be mild PANDAS - one of them so mild that we weren't even sure about the diagnosis. Neither met any DSM criteria for any kind of diagnosis. We were not at the point where we would have pursued IVIG for PANDAS alone. However, we found out that they were immune deficient - pretty badly so, and that they had chronic strep not eradicated by a dozen courses of antibiotics, and so we basically had no choice but to go with IVIG.

 

We did IVIG with Dr. B 4 weeks ago. Wow, what a difference. The first 2 weeks were rocky - we saw things that worried us, as well as things that were positive. However, the difference is life altering. By a month ago, I had come to dread picking the kids up from school in the afternoon - not because of disabling OCD or tics or anything, but because of the mood crapshoot - would they drag and whine and and fuss all afternoon and make me exasperated and exhausted, or would they be ok? As soon as they woke up each day I would look at their eyes (circles, pupils, etc) with trepidation, to get a read on how our day would be. If I saw bad news, I'd sink. Every time I accepted an invitation for a playdate I would have to wonder if they would be in an acceptable place when the day actually came, or if they might get unlucky and wind up alienating their friends with a crappy mood. I doubted my parenting. But since the IVIG, they come home from school each day with great big smiles. They make it through each day with good energy. They cooperate (age-expected). Whining is virtually absent. Tics are completely absent. The still have their moments (what 4 and 6 year olds don't?), but everyone comments on how different they are - the light in their eyes, their energy levels, their eye contact, their color, their social engagement, their speech - and they were "fine" with respect to these things in the first place. Even their physical coordination is better. I had always thought my kids just weren't particularly physically coordinated - just a touch below average, no big deal. Now, ds6 is suddenly making baskets in a regulation hoop, riding a bike without training wheels, taking first place in several events (including hurdles) at track, etc. It turns out that he's very athletic! My 4 year old WANTS to write, which he was always too frustrated to do before. He colors much more within the lines, which he never even tried to do before. He socializes with a broad group of kids at school instead of just his best friends. Thinking about all of the differences - the things we thought were "just them" and that we were fine with, not realizing that their "real selves" were compromised - makes me want to cry.

 

And still, I think we have even better to look forward to. At ds4's 4-year check-up earlier this week, his ped said that his sinuses, albeit improved, are still swollen, and that we can expect further improvement with time. If his sinuses are still inflamed, I'm guessing that his brain might still be as well. (He doesn't have any allergies, so inflammation=infection for him.) Both kids are going for another monthly IVIG next week, and will continue for a few more months.

 

To make matters even better, their IVIG treatments are being covered by the insurance except for a $40 co-pay! And the insurance has agreed to pay for up to 11 treatments for ds6 and 12 for ds4! We had expected AT LEAST to pay for 20% after the $1000 deductible. Even better, they will get the rest of their treatment moving forward right here in our area in Southern CA. Their pediatrician, who is also an infectious disease specialist (and who diagnosed PANDAS in the first place), was very excited about the improvements, congratulated me on having pursued the situation aggressively, and has agreed to order all of their treatment and monitor their conditions locally from now on in accordance with Dr. B's guidance.

 

I don't expect that this will be the end of PANDAS for us, but at least I feel that we are on the right track and that we know what to do moving forward.

[momto2pandas]

No, I am only selectively immune deficient, but my sons are both broadly immune deficient. Low total IgG, low IgG Subclass 3, and failed response to Prevnar.

 

My mother told me that I was sick constantly until about 1st grade (I was hospitalized with infections), and then got a lot better. We did not know at the time that I was immune deficient (assuming that I was). My ds4's numbers are significantly worse than ds6's, so I'm hoping that maybe they are on the same trajectory I was on and their immune deficiencies will get better/narrower over time. Of course the IVIG will help too, but I'm hoping that they may have underlying maturation of their immune systems even on their own.

 

 

 

Are you sons selectively immune deficient to just strep? What test showed the immune deficiency?

I am teary with happiness for you after reading your post. I hope I am in your shoes soon.

Angela

 

 

I haven't posted an update in a couple of weeks, but wanted to add my 2 cents in here. A month ago my children were what we considered to be mild PANDAS - one of them so mild that we weren't even sure about the diagnosis. Neither met any DSM criteria for any kind of diagnosis. We were not at the point where we would have pursued IVIG for PANDAS alone. However, we found out that they were immune deficient - pretty badly so, and that they had chronic strep not eradicated by a dozen courses of antibiotics, and so we basically had no choice but to go with IVIG.

 

We did IVIG with Dr. B 4 weeks ago. Wow, what a difference. The first 2 weeks were rocky - we saw things that worried us, as well as things that were positive. However, the difference is life altering. By a month ago, I had come to dread picking the kids up from school in the afternoon - not because of disabling OCD or tics or anything, but because of the mood crapshoot - would they drag and whine and and fuss all afternoon and make me exasperated and exhausted, or would they be ok? As soon as they woke up each day I would look at their eyes (circles, pupils, etc) with trepidation, to get a read on how our day would be. If I saw bad news, I'd sink. Every time I accepted an invitation for a playdate I would have to wonder if they would be in an acceptable place when the day actually came, or if they might get unlucky and wind up alienating their friends with a crappy mood. I doubted my parenting. But since the IVIG, they come home from school each day with great big smiles. They make it through each day with good energy. They cooperate (age-expected). Whining is virtually absent. Tics are completely absent. The still have their moments (what 4 and 6 year olds don't?), but everyone comments on how different they are - the light in their eyes, their energy levels, their eye contact, their color, their social engagement, their speech - and they were "fine" with respect to these things in the first place. Even their physical coordination is better. I had always thought my kids just weren't particularly physically coordinated - just a touch below average, no big deal. Now, ds6 is suddenly making baskets in a regulation hoop, riding a bike without training wheels, taking first place in several events (including hurdles) at track, etc. It turns out that he's very athletic! My 4 year old WANTS to write, which he was always too frustrated to do before. He colors much more within the lines, which he never even tried to do before. He socializes with a broad group of kids at school instead of just his best friends. Thinking about all of the differences - the things we thought were "just them" and that we were fine with, not realizing that their "real selves" were compromised - makes me want to cry.

 

And still, I think we have even better to look forward to. At ds4's 4-year check-up earlier this week, his ped said that his sinuses, albeit improved, are still swollen, and that we can expect further improvement with time. If his sinuses are still inflamed, I'm guessing that his brain might still be as well. (He doesn't have any allergies, so inflammation=infection for him.) Both kids are going for another monthly IVIG next week, and will continue for a few more months.

 

To make matters even better, their IVIG treatments are being covered by the insurance except for a $40 co-pay! And the insurance has agreed to pay for up to 11 treatments for ds6 and 12 for ds4! We had expected AT LEAST to pay for 20% after the $1000 deductible. Even better, they will get the rest of their treatment moving forward right here in our area in Southern CA. Their pediatrician, who is also an infectious disease specialist (and who diagnosed PANDAS in the first place), was very excited about the improvements, congratulated me on having pursued the situation aggressively, and has agreed to order all of their treatment and monitor their conditions locally from now on in accordance with Dr. B's guidance.

 

I don't expect that this will be the end of PANDAS for us, but at least I feel that we are on the right track and that we know what to do moving forward.

[Doug]

Anyone have Anthem Blue Cross, and have IVIG covered? What seems to be the required set of symptoms or diagnoses to get this covered by insurance?

We have Anthem Blue cross and we are still waiting.........

it has been 4 months

I dont think we are going to get anything back

I dont know what they want, it is expermential to them

sooooo?

That is why we did not wait for them to get ivig

we just did it.

[Phasmid]

My experience with Anthem has been pretty bad unless it is something simple like routine labs, office visits. I fought for one year to get them to pay for a celiac/IBS panel. I would call again and again and bug the dickens out of them. Oh.. and the only thing that got them to pay the bill was telling them I would need to "involve my attorney" then all of a sudden it was a different story!

 

How was your order for IVIG written up? Did your doctor specifiy an immune problem or just "OCD" or something?

[Joan Pandas Mom]

I have Blue Shield and Blue Cross too. It is in review with them. I think when our kids are doing better we need to form a fight. It is like denying chemo for a cancer patient.

[karmen]

I keep reading about Dr. K... can someone share some info on who this doc is... sounds like he has been helpful.

 

 

 

Ok, I finally got an appt. with Dr. K. Should I spend the money? (Some of you must be laughing at me right now, seeing as how I have complained about not being able to contact him!) Especially if the child isn't severe?

 

The reasons I am doing this (as a follow up after phone consult with another doc) is this:

 

1. Even though he has no tics, and the ocd is mild (in comparison with all of your cases), he still has goofy fears (can't sleep alone, can't always go upstairs alone, depending on the day, although this got better (i think) after doing Biaxin last month.

2. School anxiety, math learning issues, severe short term memory issue, attention issue (when it comes to school work)

3. Want to find out from Dr. K. if doing something more drastic than antibiotics will "prevent" further episodes in the future (one year ago was his last severe bout with raging ocd/tics).

4. Need to find an answer for his addictive behavior, whether this is in fact a form of ocd (addicted to gaming, and will have complete melt if he doesn't get his fix)

 

I think Dr. K. is our last hope, before SSRI, counseling, jumping off bridges...

[peglem]

I keep reading about Dr. K... can someone share some info on who this doc is... sounds like he has been helpful.

 

Here's a link to his website:

 

http://webpediatrics.com/pandasclinicalcases.html

[melanie]

I have Blue Shield and Blue Cross too. It is in review with them. I think when our kids are doing better we need to form a fight. It is like denying chemo for a cancer patient.

 

 

BCBSNJ covered dannys IVIG but under immune defiency Not PANDAS .The 1st IV was covered under PANDAS but they said they made a mistake,whatever ,anayway they dont like the PANDAS thing,well,untill one of the CEOs at BCBS gets PANDAS then maybe they will understand the needs of some of our kids.

 

Melanie

[MomWithOCDSon]

We saw Dr. K. a few weeks ago, and he is one of the providers included within our BCBS of Illinois PPO. So, the consultation was covered. Dr. K. has said, however, that notwithstanding a documented immune deficiency, BCBS will not cover IVIG for PANDAS. Our testing came back indicating no deficiencies . . . just high titers . . . so I guess we'll be on our own if we have to go the IVIG route.

 

Even without an official listing in the DXR, will Dr. K. and Swedo's presentation of their new PANDAS paper, which I understand will set IVIG as a primary treatment protocol, in July in Washington, D.C. put IVIG on the "map" with respect to the remaining insurance companies that don't yet recognize it? If not, I wouldn't even know where to begin to get some forward momentum on that! We don't have a Jenny McCarthy-like celebrity out there pitching or lobbying on The Hill for us in this regard! Aarrgghh!

[melanie]

We saw Dr. K. a few weeks ago, and he is one of the providers included within our BCBS of Illinois PPO. So, the consultation was covered. Dr. K. has said, however, that notwithstanding a documented immune deficiency, BCBS will not cover IVIG for PANDAS. Our testing came back indicating no deficiencies . . . just high titers . . . so I guess we'll be on our own if we have to go the IVIG route.

 

Even without an official listing in the DXR, will Dr. K. and Swedo's presentation of their new PANDAS paper, which I understand will set IVIG as a primary treatment protocol, in July in Washington, D.C. put IVIG on the "map" with respect to the remaining insurance companies that don't yet recognize it? If not, I wouldn't even know where to begin to get some forward momentum on that! We don't have a Jenny McCarthy-like celebrity out there pitching or lobbying on The Hill for us in this regard! Aarrgghh!

 

 

What new paper???

[7upMom]

We saw Dr. K. a few weeks ago, and he is one of the providers included within our BCBS of Illinois PPO. So, the consultation was covered. Dr. K. has said, however, that notwithstanding a documented immune deficiency, BCBS will not cover IVIG for PANDAS. Our testing came back indicating no deficiencies . . . just high titers . . . so I guess we'll be on our own if we have to go the IVIG route.

 

We have BC/BS of Illinois PPO also and our consultations with Dr K were covered too. We are a little over 5 weeks post IVIG and just got one of our EOB's back from Dr K's submission- they are agreeing to pay 400 of the 2400 fee. I am going to wait about a week to see if we get EOB's back from Oakbrook and for the medicine ( that will be the big one) and see what they are going to pay or deny - I can let you know where we get with BC/BS if you'd like MomWithOCDSon?