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Does this kind of research exist?


LaraM

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I have heard from Dr. Murphy and my son's current PANDAS doc that it is likely a PANDAS exacerbation will occur when we get our child immunized. His current PANDAS doctor even said if it was my kid, I wouldn't immunize. On top of that, he wasn't sure if he could pull him out if/when he did exacerbate (his last exacerbation was awful--I know you guys get that totally). We are trying to get IVIG covered through our ds's immunologist, but he wants him immunized for diptheria, pneumococcal, and tetanus so that when he rechecks his titers, he can determine if he has a transient form of hypogammaglobulinemia or a common form? Sorry if this isn't quite right, but I was trying to listen to the doc while placating my kids arguing over an I-Pod :wacko:

 

At any rate, he won't order the IVIG if it is a transient form, but he can't determine it unless he is immunized (to see how his body reacts to the immunization). He said if there was research to prove that immunizations would throw a child into a PANDAS exacerbation, he'd love to see it and would forgo the required immunizations in order to approve IVIG. Is there any research like that that exists??? Is this just anecdotal evidence by the doctors that actually treat PANDAS? I am not willing to immunize because I am so utterly terrified of what would happen as a result and refuse to go there. I tried to explain to him that I though there wouldn't be much out there as PANDAS is new as far as research goes, but that's not going to get us what we want/need. Suggestions? Thanks for your help!!!

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Lara - Different insurance companies have different requirements for IVIG. If it were me, I would contact my insurance company to find out the exact requirement. I hope others will chime in on this post.

 

My understanding is that some insurance companies look at quality of life (ex: number of days absent from school / number of infections per year) in addition to antibody numbers. Furthermore, iF your child is showing specific deficient titers in diptheria, pneumococcal, tetanus and so on and has been vaccinated in the past - then that is showing that he is not making antibodies to these and it may be enough (coupled with frequent illness) to cover IVIG. Furthermore, some insurance companies, such as United Healthcare cover IVIG for PANDAS (be careful with this - you do not want to put PANDAS down if you can avoid it... it may be enough for a future insurance company to refuse treatment).

 

So, I guess my thinking is that you should direct your questions to the insurance company now to see what they will cover. Then you can decide what you need to do and what doctor can best serve you.

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Lara - Different insurance companies have different requirements for IVIG. If it were me, I would contact my insurance company to find out the exact requirement. I hope others will chime in on this post.

 

My understanding is that some insurance companies look at quality of life (ex: number of days absent from school / number of infections per year) in addition to antibody numbers. Furthermore, iF your child is showing specific deficient titers in diptheria, pneumococcal, tetanus and so on and has been vaccinated in the past - then that is showing that he is not making antibodies to these and it may be enough (coupled with frequent illness) to cover IVIG. Furthermore, some insurance companies, such as United Healthcare cover IVIG for PANDAS (be careful with this - you do not want to put PANDAS down if you can avoid it... it may be enough for a future insurance company to refuse treatment).

 

So, I guess my thinking is that you should direct your questions to the insurance company now to see what they will cover. Then you can decide what you need to do and what doctor can best serve you.

 

I was stonewalled with our insurance company. My son's pediatrician isn't willing to order IVIG based on the PANDAS doc's recommendation because he is a DAN doctor and she fundamentally disagrees with his position on immunizations (that is a whole separate issue--sigh). At any rate, she said she's willing to order IVIG if "someone smarter than her" can recommend it...ds was seeing Dr. Murphy in one of her studies. The pediatrician said if Dr. Murphy recommended it, she'd do it. I don't think Dr. Murphy will order it--I can check into it, but I think she just sticks with abx. I tried to contact Dr. Latimer, but she isn't accepting patients out of state. At any rate, our ped. recommended going to the immunologist...that really got us nowhere today. DS hasn't had those vaccines because last year when he was due to receive them, he was in the beginning stages of his first major exacerbation and I said we couldn't do them until he was a little more functional (at that time, he was rolling around on the floor, ticcing, really OCD, 30-45 min. periods of going completely catatonic). I didn't know much about immunizations etc., but in hindsight, I am so thankful he didn't get those immunizations because it could have made a terrible exacerbation a catastrophic one. Our insurance is crappy and very localized to the area we live in...no pandas docs on the plan etc. I have contacted them, and got nowhere.

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Has your son reacted to non-strep triggers (viral, allergies, etc) in the past? I think if that is the case, you have a better rationale (with Dr. Murphy) to want treatment beyond just abs (eg. IVIG). Also, if you son's baseline is changing with time, I would point that out to Dr. Murphy too.

 

Perhaps Dr. Murphy doesn't order IVIG herself, but it might be enough for your ped or immunologist if she recommends it for your son (along with no vax) for them to order IVIG (without vax)?

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Has your son reacted to non-strep triggers (viral, allergies, etc) in the past? I think if that is the case, you have a better rationale (with Dr. Murphy) to want treatment beyond just abs (eg. IVIG). Also, if you son's baseline is changing with time, I would point that out to Dr. Murphy too.

 

Perhaps Dr. Murphy doesn't order IVIG herself, but it might be enough for your ped or immunologist if she recommends it for your son (along with no vax) for them to order IVIG (without vax)?

 

 

Good point...actually Dr. Murphy was the first to suggest that he had an immune deficiency. We followed up with a local immunologist (Melbourne, FL). I am going to see if I can get in to Dr. Murphy for the referral...he has definitely had non-strep triggers and his baseline has plummeted since Dr. Murphy had his levels checked a year ago. Thanks...I really appreciate your input so much!!!

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Lara, Did Dr. Murphy recommend IVIG? I wonder if she would send a treatment plan or recommendation to this doctor saying that immunization is not a good option at this point. Personally, I wouldn't do it either. I would find someone else to do the IVIG based on something else. To risky....

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My daughter has been diagnosed with PANDAS. She treats with Dr. B and he has written her a note to state that she should not get any more immunizations. She got the varicella vaccine on 12/1/09 and had tics within 2 weeks and then full blown OCD in January. She did have high strep antibodies when checked. Right now we are not doing IVIG but I do know he does it out of one of his offices.

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My daughter has been diagnosed with PANDAS. She treats with Dr. B and he has written her a note to state that she should not get any more immunizations. She got the varicella vaccine on 12/1/09 and had tics within 2 weeks and then full blown OCD in January. She did have high strep antibodies when checked. Right now we are not doing IVIG but I do know he does it out of one of his offices.

 

Our daughter had an adverse reaction to the varicella vaccine as well. She developed shingles and then within months, a PANDAS exacerbation. I often wonder if the varicella vaccine is somehow linked to PANDAS as PANDAS cases seemed to spike once that vaccine was introduced. It may just be me wondering, but I'd be curious to know if there was is an immune trigger in that vaccine that leads to PANDAS onset in our children. Because of this reaction and PANDAS, she will no longer receive vaccines either. I think we will stop vaccinating our son as well since PANDAS can run in families. It's been a difficult decision to make.

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If u listen to Swedo interview last week on blogtalk radio, she mentions a study with 5 pitands kids. One was set off by varicella vaccine, one by actually chicken pox...ne was h1n1, one regular flu, can't rememerlast one, could have neem pneumonia.

 

My child is pitand, and a cold could cause an exacerbation, I'm not really anxious to find out what a vaccine would do. Either way, big risk since I'm sure actual infection would be just as bad. Sigh...since he does not make pneumonia titers, and has probable chronic mycoplasma, we will not do the vaccine challenge test. Unfortuately, doest qualify for ivig through insurance since he didnt have pneumonia, more than 2 x per year, and I think the mycop is different type of pneumonia...not a typo u get covered in the immunizatios-although from my research it is a very very common contaminant found in vaccines. Another reason not to vaccinate.

Listen to Swedo interview toward the end, that is where she mentions it. It might not help you with your doctor, but may she says something you could google to help build your case.

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I have no medical evidence of vaccinations "causing" PANDAS, but our own personal experience was after our DD11 had her 6th grade vaccinations last June, it was almost instantaneously that her behavior changed dramatically. We were not aware of PANDAS at the time and went through months of spiralling downward until she became completely non-functional in November. I hold a very strong belief that one/all of the vaccinations triggered this episode. As we look back, this was not her first exacerbation, but we did not know what we were looking at then. However, this was the BIG one that put us on the path to PANDAS Dx. She took a Varicella booster as part of that panel of vaccinations. I also had my kids immunized for influenza on an annual basis since DD had pnuemonia twice as an infant. I'm sure those immunizations played a part in this experience.

 

After good discussion with Dr. K, we will not vaccinate our daughter again. He gave very compelling reasons why she should not have the HPV nor the menningitis vaccines.

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My daughter has been diagnosed with PANDAS. She treats with Dr. B and he has written her a note to state that she should not get any more immunizations. She got the varicella vaccine on 12/1/09 and had tics within 2 weeks and then full blown OCD in January. She did have high strep antibodies when checked. Right now we are not doing IVIG but I do know he does it out of one of his offices.

 

Our daughter had an adverse reaction to the varicella vaccine as well. She developed shingles and then within months, a PANDAS exacerbation. I often wonder if the varicella vaccine is somehow linked to PANDAS as PANDAS cases seemed to spike once that vaccine was introduced. It may just be me wondering, but I'd be curious to know if there was is an immune trigger in that vaccine that leads to PANDAS onset in our children. Because of this reaction and PANDAS, she will no longer receive vaccines either. I think we will stop vaccinating our son as well since PANDAS can run in families. It's been a difficult decision to make.

 

Maybe an interesting tidbit:

A year ago, (did not know PANDAS) I put my dd5 on Enhansa (curcumin supplement) got to the highest dose, and chicken pox broke out on her torso, and for the next 4 weeks, it slowly moved down her entire body. No fever, they didn't itch.

Took her to a Dr., he looked and said: 'Wow! Looks exactly like chicken pox!'

She was fully vaxed. I do not vaccinate anymore.

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Lara,

 

My son is also a patient of Dr. Murphy's. At our appointment in December - they started discussing the possibility of IVIG for him. One of her associates - Dr. Troufexis (who both I and my son absolutely ADORE and is much easier to get in with on short notice FYI) made the suggestion. So you might want to check with them again - she may have started to change her stance.

 

As for the immunizations - that's a tough one. Our son had a massive flare up in symptoms after getting the H1N1 in 09 (it was pre PANDAS dx) that we could trace directly back to the shots. When he went in for his 3 yr immunizations this year, we discussed ad nauseum with our Dr. the pros and cons. He was still on abx and about 85% normal. We opted to have him vaccinated, but only 1 at a time, and no combo shots if possible. This way we could closely monitor his reaction to each vaccine, identify which may cause issues, etc...

 

We spread each shot out by at least 2 weeks and ultimately didn't have any problems. We now have a working plan moving forward with our doctor regarding immunizations - and we all agreed that if there is any sign of excaerbation at all, they would be put off.

 

Don't know if this is a type of compromise that might work - but thought I'd mention it.

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Maybe an interesting tidbit:

A year ago, (did not know PANDAS) I put my dd5 on Enhansa (curcumin supplement) got to the highest dose, and chicken pox broke out on her torso, and for the next 4 weeks, it slowly moved down her entire body. No fever, they didn't itch.

Took her to a Dr., he looked and said: 'Wow! Looks exactly like chicken pox!'

She was fully vaxed. I do not vaccinate anymore.

 

 

I wonder if your dd had shingles?

 

My non-pandas dd got shingles at age 5 (she had the chicken pox vax at age 1).

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Maybe an interesting tidbit:

A year ago, (did not know PANDAS) I put my dd5 on Enhansa (curcumin supplement) got to the highest dose, and chicken pox broke out on her torso, and for the next 4 weeks, it slowly moved down her entire body. No fever, they didn't itch.

Took her to a Dr., he looked and said: 'Wow! Looks exactly like chicken pox!'

She was fully vaxed. I do not vaccinate anymore.

 

 

I wonder if your dd had shingles?

 

My non-pandas dd got shingles at age 5 (she had the chicken pox vax at age 1).

 

 

I don't think so- it was pox working their way down her entire body- I thought Shingles came out concetrated in 1 area? (My DH had Shingles- came out on his shoulder, extremely painful) these didn't hurt nor itch- very weird! Enhansa can pull viruses. Actually now afraid to use it again, thinking about this, don't want to activate virus because of PANDAS?

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I don't think so- it was pox working their way down her entire body- I thought Shingles came out concetrated in 1 area? (My DH had Shingles- came out on his shoulder, extremely painful) these didn't hurt nor itch- very weird! Enhansa can pull viruses. Actually now afraid to use it again, thinking about this, don't want to activate virus because of PANDAS?

 

Was the rash on both left and right side of her body?

 

This is from webMD (on shingles)

 

The nerve roots that supply sensation to your skin run in pathways on each side of your body. When the virus becomes reactivated, it travels up the nerve roots to the area of skin supplied by those specific nerve roots. This is why the rash can wrap around either the left or right side of your body, usually from the middle of your back toward your chest. It can also appear on your face around one eye. It is possible to have more than one area of rash on your body.

 

I heard that they are seeing a lot more shingles in younger kids b/c of the chicken pox vax!

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