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Im reading and reading My son is going to do the IVIG in a few weeks hes 15 is there anyone out there thats older and has done this

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Melanie, my daughter is 13 1/2 and has been doing IVIG for a year. Happy to help if I can.

 

Nancy

 

Im reading and reading My son is going to do the IVIG in a few weeks hes 15 is there anyone out there thats older and has done this
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Melanie, my daughter is 13 1/2 and has been doing IVIG for a year. Happy to help if I can.

 

Nancy

 

Im reading and reading My son is going to do the IVIG in a few weeks hes 15 is there anyone out there thats older and has done this

 

 

Hi Nancy

Thanks for responding what do you mean for a year? How many times has she done it? Im still awaiting the call from the MD about insurance coverage.

Melanie

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Hi Melanie,

 

My daughter has her IVIG infusion every 28 days -- we started last August. She had her first overnight onset at age 3 1/2 but it was not diagnosed until she was 7. She has been taking twice daily penicillin since age 7 and that has helped but it is just a bandaid treatment for her. It took me years to finally get insurance to cover IVIG and now with Harvard Pilgrim HealthCare they do cover IVIG for PANDAS. The infusions have completely eliminated her violent rages and severe mood dysregulation, 90-95% of her tics, and she is sleeping through the night all by herself for the first time since she was 3 1/2. Although it has not helped her OCD/anxiety, she is much more focussed and has gone from Cs and Ds at school (not to mention talk of possible residential placement), to making straight As and being pushed ahead a grade in history.

 

I wish you every success with the IVIG, Melanie. I hope it is the answer for your son!!

 

Nancy

 

Melanie, my daughter is 13 1/2 and has been doing IVIG for a year. Happy to help if I can.

 

Nancy

 

Im reading and reading My son is going to do the IVIG in a few weeks hes 15 is there anyone out there thats older and has done this

 

 

Hi Nancy

Thanks for responding what do you mean for a year? How many times has she done it? Im still awaiting the call from the MD about insurance coverage.

Melanie

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Hi Nancy:

 

I am happy that you have had such success with IVIG!! What a hard journey you have been on!!

 

What type of doctor is treating your daughter right now? And I am curious as to if you compared doing PEX versus IVIG since your daughter is at an older age?

 

Do you feel that the IVIG was the key to your success or did you also do any alternative therapies?

 

elizabeth

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Hi Elizabeth,

 

My daughter's primary doctor is a DAN doctor but the doctor administering the IVIG is a pediatric rheumatologist. Both doctors felt we should do IVIG before considering PEX. We also saw an immunologist who concurred. PEX is something I am considering for the future. There is no research on the efficacy of IVIG v. PEX on older kids so we are traveling on unchartered waters. Even anecdotally there is limited amount of info on this.

 

If you are asking if IVIG is key to the success of treating the PANDAS, then categorically YES. The key to treating my daughter's ASD very early on was round the clock DIR/Floortime and DAN protocol. Although she is no longer on a highly restricted diet, she was gluten, casein, soy, dye, and additive free from the time she was 3 until she was about 9. Her diet today is still dye and additive free and she eats mostly organic food and very limited sugar/carbs. House and yard is also chemical free. We have done chelation and glutathione IVs for years. Monthly glutathione IVs over a three-year period cleared up her colitis. She has also had years of other therapies: Speech/language, OT, social skills group. hippotherapy, etc.

 

Indeed, it has been a V-E-R-Y L-O-N-G journey. It ages you very quickly! My best weapons are a good sense of humor, a LOT of patience, and a strong drive to advocate for my daughter. Some days are better than others!! :wacko:

 

Nancy

 

Hi Nancy:

 

I am happy that you have had such success with IVIG!! What a hard journey you have been on!!

 

What type of doctor is treating your daughter right now? And I am curious as to if you compared doing PEX versus IVIG since your daughter is at an older age?

 

Do you feel that the IVIG was the key to your success or did you also do any alternative therapies?

 

elizabeth

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Nancy,

 

Is your daughter receiving monthly IVIG based solely on her Pandas diagnosis or does she also have some additional immune deficiency issues? How is the Rheumy coding it for insurance purposes?

 

Did she have an immunological workup done? Bloodwork for all Ig's, subclasses and vaccine titers?

 

Thanks

Sam

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Hi Sam,

 

Yes, solely based on PANDAS diagnosis. It"s being coded as PANDAS and insurance is covering it. She did have low IGG levels but not low enough. She's had full immun workup a few times over the years.

 

Nancy

 

 

Nancy,

 

Is your daughter receiving monthly IVIG based solely on her Pandas diagnosis or does she also have some additional immune deficiency issues? How is the Rheumy coding it for insurance purposes?

 

Did she have an immunological workup done? Bloodwork for all Ig's, subclasses and vaccine titers?

 

Thanks

Sam

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Hi Sam,

 

Yes, solely based on PANDAS diagnosis. It"s being coded as PANDAS and insurance is covering it. She did have low IGG levels but not low enough. She's had full immun workup a few times over the years.

 

Nancy

 

 

Nancy,

 

Is your daughter receiving monthly IVIG based solely on her Pandas diagnosis or does she also have some additional immune deficiency issues? How is the Rheumy coding it for insurance purposes?

 

Did she have an immunological workup done? Bloodwork for all Ig's, subclasses and vaccine titers?

 

 

 

Im still waiting on the insurance answer I hope they dont turn him down. He also has asd so its nice to hear someone else who has the double wammy.Danny did ivig when he was 3 or 4 I dont remember .Our md is a neurologist our DAN dr thinks his pandas is cured from azith because his titers are good some get it some dont .Does your daughter go into the hospital for the iv or do you go to outpatient We are going to the hospital for 3 days

 

Melanie

Thanks

Sam

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Hi Sam,

 

Yes, solely based on PANDAS diagnosis. It"s being coded as PANDAS and insurance is covering it. She did have low IGG levels but not low enough. She's had full immun workup a few times over the years.

 

Nancy

 

 

Nancy,

 

Is your daughter receiving monthly IVIG based solely on her Pandas diagnosis or does she also have some additional immune deficiency issues? How is the Rheumy coding it for insurance purposes?

 

Did she have an immunological workup done? Bloodwork for all Ig's, subclasses and vaccine titers?

 

 

 

Im still waiting on the insurance answer I hope they dont turn him down. He also has asd so its nice to hear someone else who has the double wammy.Danny did ivig when he was 3 or 4 I dont remember .Our md is a neurologist our DAN dr thinks his pandas is cured from azith because his titers are good some get it some dont .Does your daughter go into the hospital for the iv or do you go to outpatient We are going to the hospital for 3 days

 

Melanie

Thanks

Sam

 

 

 

Im still waiting on the insurance answer I hope they dont turn him down. He also has asd so its nice to hear someone else who has the double wammy.Danny did ivig when he was 3 or 4 I dont remember .Our md is a neurologist our DAN dr thinks his pandas is cured from azith because his titers are good some get it some dont .Does your daughter go into the hospital for the iv or do you go to outpatient We are going to the hospital for 3 days

 

Melanie

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She does outpatient at Boston Children's infusion center. We're usually in at 11am and out by 3pm. It has become a very routine part of each month. I sure hope you can get insurance to cover, Melanie!

 

Nancy

 

Im still waiting on the insurance answer I hope they dont turn him down. He also has asd so its nice to hear someone else who has the double wammy.Danny did ivig when he was 3 or 4 I dont remember .Our md is a neurologist our DAN dr thinks his pandas is cured from azith because his titers are good some get it some dont .Does your daughter go into the hospital for the iv or do you go to outpatient We are going to the hospital for 3 days

 

Melanie

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She does outpatient at Boston Children's infusion center. We're usually in at 11am and out by 3pm. It has become a very routine part of each month. I sure hope you can get insurance to cover, Melanie!

 

Nancy

 

Im still waiting on the insurance answer I hope they dont turn him down. He also has asd so its nice to hear someone else who has the double wammy.Danny did ivig when he was 3 or 4 I dont remember .Our md is a neurologist our DAN dr thinks his pandas is cured from azith because his titers are good some get it some dont .Does your daughter go into the hospital for the iv or do you go to outpatient We are going to the hospital for 3 days

 

Melanie

 

 

Tell me your secret how did you get them to pay they havent turned me down yet but Im preparing myself

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Oh Melanie, I wish I could tell you I had a secret, but I can't. It took me years (and lots of appeals and advocating) to find an insurance company that would cover it and it was quite by accident that I found Harvard Pilgrim Health. As far as I have heard, it is the only insurance company that will cover IVIG for PANDAS. But I know there must be others. Most people do better if they can get their doctor to code it as something else that will cover IVIG. I know that BCBS (and many others) will cover it if the immune levels are low enough. Ours were low but not that low.

 

Nancy

 

 

 

 

Tell me your secret how did you get them to pay they havent turned me down yet but Im preparing myself

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