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Onset Of Puberty and IVIG


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Our daughter was diagnosed with PANDAS 14 months ago. Her symptoms pretty much disappeared over 3 months post diagnosis. She had a slight increase in obsessive cleaning after receiving Flumist this fall (we will not administer that or a flu vaccine in the future). She still cleans a bit, but behavior is manageable. She is happy, healthy, well adjusted in school, enjoys her friends, and is making A's. We feel like we have her back. Our ENT prescribes a precautionary round of Augmentin when strep flares at her school and so far this has kept her strep free this year. I listened to the Chicago radio story on PANDAS and felt my stomach drop when Dr. K stated that IVIG needed to be administered before the onset of puberty which occurs at the approximate age of 10. Our daughter is currently 9 1/2. We don't feel that her symptoms warrant IVIG at this point. However, after hearing Dr. K's comment I am beginning to second guess our choice. There are so many different schools of thought out there and I'm not sure which is correct. Any thoughts on this?

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I would consult with Dr. K to fully understand his perspective especially as it relates to your child's medical history.

 

Our daughter was diagnosed with PANDAS 14 months ago. Her symptoms pretty much disappeared over 3 months post diagnosis. She had a slight increase in obsessive cleaning after receiving Flumist this fall (we will not administer that or a flu vaccine in the future). She still cleans a bit, but behavior is manageable. She is happy, healthy, well adjusted in school, enjoys her friends, and is making A's. We feel like we have her back. Our ENT prescribes a precautionary round of Augmentin when strep flares at her school and so far this has kept her strep free this year. I listened to the Chicago radio story on PANDAS and felt my stomach drop when Dr. K stated that IVIG needed to be administered before the onset of puberty which occurs at the approximate age of 10. Our daughter is currently 9 1/2. We don't feel that her symptoms warrant IVIG at this point. However, after hearing Dr. K's comment I am beginning to second guess our choice. There are so many different schools of thought out there and I'm not sure which is correct. Any thoughts on this?
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Our daughter was diagnosed with PANDAS 14 months ago. Her symptoms pretty much disappeared over 3 months post diagnosis. She had a slight increase in obsessive cleaning after receiving Flumist this fall (we will not administer that or a flu vaccine in the future). She still cleans a bit, but behavior is manageable. She is happy, healthy, well adjusted in school, enjoys her friends, and is making A's. We feel like we have her back. Our ENT prescribes a precautionary round of Augmentin when strep flares at her school and so far this has kept her strep free this year. I listened to the Chicago radio story on PANDAS and felt my stomach drop when Dr. K stated that IVIG needed to be administered before the onset of puberty which occurs at the approximate age of 10. Our daughter is currently 9 1/2. We don't feel that her symptoms warrant IVIG at this point. However, after hearing Dr. K's comment I am beginning to second guess our choice. There are so many different schools of thought out there and I'm not sure which is correct. Any thoughts on this?

As many of you may know, I tend to use IVIG as more of a last resort than an initial therapy.

 

IVIG is used extensively throughout adult neurology to treat a wide variety of conditions, many of which occur in the elderly

 

http://www.ncbi.nlm.nih.gov/pubmed/12499469

 

I have not been able to find any evidence in the medical literature to suggest that IVIG efficacy for any condition trails off markedly after puberty. If anyone else has, please let me know.

 

Almost all of the PANDAS patients I have treated with IVIG have been post-pubertal, young to mid-teens. Response has been very good and long lasting.

 

Now that we are considering multiple etiologies behind "PANDAS-like" illnesses, i.e. not only strep but also mycoplasma and "Lyme-like" illnesses (Bb-lyme and anti-flagellin, it would seem to me that efficacy of IVIG likely depends more on the underlying etiology rather than before or after puberty. If the idea of "accumulation of co-infections" is an important one in PANDAS, the older one is, the more chance of accumulating co-infections - and perhaps increasing the difficulty of treating fully with IVIG

 

That being said, Dr. K likely has more experience than any doctor in the world regarding use of IVIG in the treatment of PANDAS and his personal dataset on IVIG-treated patients is far larger than mine.

 

I think Dr. K's views may have encouraged parents of older pre-pubertal children to expedite consideration of use of IVIG. I have a great deal of respect for Dr. K and his efforts, and he could be correct and/or simply looking at a different population sample.

 

My point is IVIG should almost never be a rushed decision. It is serious immunomodulatory therapy. It is my opinion that, other perhaps in extremely severe (usually "Exorcist syndrome" level) PANDAS, one should carefully evaluate a child's immune system prior to giving IVIG.

 

For example, it's fairly well-known that patients with IgA deficiency or anti-IgA antibodies are at much higher risk for adverse reaction upon IVIG infusion

 

http://www.ncbi.nlm.nih.gov/pubmed/17923072

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I agree Dr T ,My son who is 15 has IVIG every 21 days, I know Dr K likes to use it before puberty but dannys PANDAS didnt show its ugly face until around 11 so well then what.

 

Danny also has IG defiencies and other issues.80%of his days have been good since the IVs still alot of blips.I havent heard the radio broadcast but I hope it doesnt deter others from treatment.

 

My son has 2 unbelievable mds Dr T and Dr J in NJ . Both are the smartest people I have ever met.(I come from a family of Lawyers.)no doctors (to bad).

 

Ill stick with the IVs at almost 16 ,what choice do I have I cant make him younger..

 

Melanie

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I'm always in the school of thought that every child is different.

 

When she received the flu mist, your daughter also a had a double whammy on her immune system by being exposed to strep in the household then strep outbreaks at school. Her immune system hasn't had a chance to calm down. When did she get the flu mist?

 

Also, you can try ERP type therapies in the home. Perhaps she has had that OCD ritual for so long that it is residual. Maybe she can overcome it.

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Thanks Dr T- that is reassuring.

 

Debbie- I know where you are coming from. I do think Dr K knows his stuff- just from reading his right on pandas symptoms descriptions.

 

I also have a 9.5 year old daughter with pandas. We just did plasma pheresis on her last week. I am hoping to keep pandas in remission without the exposure to ivig- however if I really think IVIG is the only way- we will do it- I wouldn't want to sentence any child to living with pandas.

 

I have that constantly nagging me- the puberty issue.

 

Pandas actually hit my younger one harder first, and she had plasma pheresis. I have been so grateful that puberty is way off for her. We have the luxury of time.

 

Please keep me posted on what you find out!

 

Eileen

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Debbie- I do just want to add that there are no guarantees. Before dd, 9, went for pex, I was in a panic, and felt if she was not 100% then we would go for IVIG. Then I started thinking, with pandas, one has to be really cautious about everything you do.

 

My little one sounds like your daughter. Doing great, with some minor pesky ocd, that doesn't affect her participation in life, or happiness. I could never justify the risks of ivig right now- not only because of the donor issue, but because of the possibility of stirring up the pandas. I do think lots of the IVIG kids also have some residual issues- so it may be really hard to get them completely back to where they were before pandas.

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I'm always in the school of thought that every child is different.

 

When she received the flu mist, your daughter also a had a double whammy on her immune system by being exposed to strep in the household then strep outbreaks at school. Her immune system hasn't had a chance to calm down. When did she get the flu mist?

 

Also, you can try ERP type therapies in the home. Perhaps she has had that OCD ritual for so long that it is residual. Maybe she can overcome it.

 

 

Vickie -- she had flu mist in October and within days was cleaning again. About 2 weeks after flu mist, our 5 year old contracted strep and h1n1. Her symptoms continued but were very minor. Since then, there has been constant strep exposure at school so she's been treated with augmentin in prophylactic doses to prevent infection. At this point, her cleaning is much less impulsive than 3 months ago so she is doing well. Last summer when there was very little exposure to illness, she showed no residual signs of her OCD at all.

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Debbie:

 

I completely understand your position. Our 11 year old daughter is so much more milder than our son. We were planning on doing IVIG a few weeks ago for her and then we found out she had lyme. Dr. K said to treat the lyme first..... so we have to wait again and I feel nervous about her age. So, we will probably end up doing the IVIG when she is 11 1/2 years old. She is just on the verge of puberty now. So, I also think that the stage of development is more important than the age of 10 (at least I am hoping this is the case.)

 

Elizabeth

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Debbie-

 

The other thing I have considered for my little one- is another steroid burst once the summer arrives. I was set on doing that as of last month- now however, I am in a very cautious mood. Not wanting to mess with the relative peace she is in now.

 

I also think- it takes the brain about a year to heal, so maybe it is possible that you will continue to see small improvements as time goes on.

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I felt the same way when I listened to that show (dd, 8.5, doing well on abx, tiny flares). I thought about it a lot last night - I'd keep in mind that a lot is edited in media, and who knows what else he said or if he is happy with the final results. If you have real concerns, then email him.

 

However, I did think that this presentation of 2 treatment options only is very concerning for a lot of people - it would really make this a disease for the well-insured or wealthy. Those folks sold their house to come up with $20 grand - a lot of people would not be even able to do that. I think leaving out the abx option is a bit irresponsible of the article itself, (not of the participants in the article) as that is often the option used, and is certainly a more affordable option for many. Where does that leave a young single mom, for example, with limited or no insurance. No hope for the child? I hate health insurance in so many ways.

 

Melanie, I loved your comment about your child being 11 at onset, and not getting any younger! That is also a huge concern for this article, it leaves the impression that there is not a lot of hope for older children - which I don't buy. Overall, I just feel like there is so much research still needed, and that this site alone likely includes at least 3-4 subtypes of "infection based neurological illness" - so there may someday be clear protocols and diagnosis for each.

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I know Dr. K has most recently treated much older children with success (but still needs to track them long term). I think it is highly dependent on how long the child has been sick and severity of symptoms as to long term outcome and if IVIG is required. I know he has treated some with just antibiotics and can give you a % of his successes with that method of treatment and how many eventually needed IVIG treatment anyway. He is not willing to currently treat my twins with IVIG and wants to continue to monitor them. BUT, they are only 2 1/2.

 

Diana P's records show about 1/3 recover on antibiotics, 1/3 get better with more aggressive treatment and 1/3 continue to struggle. Don't quote me on these precentages as we've only talked about them causally. Again, greater success with antibiotics alone happens most often when PANDAS was caught early.

 

Hopefully, that helps a little 'bit' more.

 

 

 

 

Our daughter was diagnosed with PANDAS 14 months ago. Her symptoms pretty much disappeared over 3 months post diagnosis. She had a slight increase in obsessive cleaning after receiving Flumist this fall (we will not administer that or a flu vaccine in the future). She still cleans a bit, but behavior is manageable. She is happy, healthy, well adjusted in school, enjoys her friends, and is making A's. We feel like we have her back. Our ENT prescribes a precautionary round of Augmentin when strep flares at her school and so far this has kept her strep free this year. I listened to the Chicago radio story on PANDAS and felt my stomach drop when Dr. K stated that IVIG needed to be administered before the onset of puberty which occurs at the approximate age of 10. Our daughter is currently 9 1/2. We don't feel that her symptoms warrant IVIG at this point. However, after hearing Dr. K's comment I am beginning to second guess our choice. There are so many different schools of thought out there and I'm not sure which is correct. Any thoughts on this?
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Our daughter was diagnosed with PANDAS 14 months ago. Her symptoms pretty much disappeared over 3 months post diagnosis. She had a slight increase in obsessive cleaning after receiving Flumist this fall (we will not administer that or a flu vaccine in the future). She still cleans a bit, but behavior is manageable. She is happy, healthy, well adjusted in school, enjoys her friends, and is making A's. We feel like we have her back. Our ENT prescribes a precautionary round of Augmentin when strep flares at her school and so far this has kept her strep free this year. I listened to the Chicago radio story on PANDAS and felt my stomach drop when Dr. K stated that IVIG needed to be administered before the onset of puberty which occurs at the approximate age of 10. Our daughter is currently 9 1/2. We don't feel that her symptoms warrant IVIG at this point. However, after hearing Dr. K's comment I am beginning to second guess our choice. There are so many different schools of thought out there and I'm not sure which is correct. Any thoughts on this?

As many of you may know, I tend to use IVIG as more of a last resort than an initial therapy.

 

IVIG is used extensively throughout adult neurology to treat a wide variety of conditions, many of which occur in the elderly

 

http://www.ncbi.nlm.nih.gov/pubmed/12499469

 

I have not been able to find any evidence in the medical literature to suggest that IVIG efficacy for any condition trails off markedly after puberty. If anyone else has, please let me know.

 

Almost all of the PANDAS patients I have treated with IVIG have been post-pubertal, young to mid-teens. Response has been very good and long lasting.

 

Now that we are considering multiple etiologies behind "PANDAS-like" illnesses, i.e. not only strep but also mycoplasma and "Lyme-like" illnesses (Bb-lyme and anti-flagellin, it would seem to me that efficacy of IVIG likely depends more on the underlying etiology rather than before or after puberty. If the idea of "accumulation of co-infections" is an important one in PANDAS, the older one is, the more chance of accumulating co-infections - and perhaps increasing the difficulty of treating fully with IVIG

 

That being said, Dr. K likely has more experience than any doctor in the world regarding use of IVIG in the treatment of PANDAS and his personal dataset on IVIG-treated patients is far larger than mine.

 

I think Dr. K's views may have encouraged parents of older pre-pubertal children to expedite consideration of use of IVIG. I have a great deal of respect for Dr. K and his efforts, and he could be correct and/or simply looking at a different population sample.

 

My point is IVIG should almost never be a rushed decision. It is serious immunomodulatory therapy. It is my opinion that, other perhaps in extremely severe (usually "Exorcist syndrome" level) PANDAS, one should carefully evaluate a child's immune system prior to giving IVIG.

 

For example, it's fairly well-known that patients with IgA deficiency or anti-IgA antibodies are at much higher risk for adverse reaction upon IVIG infusion

 

http://www.ncbi.nlm.nih.gov/pubmed/17923072

 

Dr. T,

 

I think the question of wether or not to proceed with IVIG for our children is perhaps the biggest question we all face. The fact that you are slower to move on to IVIG must mean that in your experience you have cured PANDAS with antibioitcs alone. I discussed this very topic with Dr. K on several occasions. He says that in his over 500 PANDAS patients, he has exactly 1 and only 1 cure of PANDAS with antibioitcs alone. And that one case was a true intitial onset caught and treated very early. He also has told me that in his experience, parents see a lessening of symptoms after an exacerbation and basically forget the way their child used to be, accept the new altered child and move on with life. There was a post on here the other day of just such an occurence where the mom assumed that the child was completely in remission from PANDAS for several years until a new exacerbation. When the girl was treated with IVIG after the most recent exacerbation, intrusive thoughts that she had been living with for several years, making her life ######, dissappeared and she was able to finally tell her mom how terrible her life had been.

 

My question to you is, how many cures with antibiotics have you documented? Have these children been free from future exacerbations? How long have you followed them?

 

Also, whether you like it or not, you and Dr. K are the country's leading voices on PANDAS now. Dr. K says without IVIG, no cure. He has treated 500 patients. Have you and he spoken about this issue, compared notes and cases and figured out why you differ in this area?

 

Thanks so much for all you are doing, Alex

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