IVIG for PANDAS/PITAND

[Petes_mom]

Hi! I'm new here & my son has finally been diagnosed with PANDAS/PITAND (after 5 yrs of misdiagnosis). We are trying to get him IVIG & having no success locally. The only way our ins will cover it is in NY State. I'm curious if anyone has had success getting IVIG on or near Long Island? Our son is 13 so we're also concerned about the age "window" of under 16 being optimal as mentioned by Dr.K on his site. Any info is greatly appreciated

[kimballot]

Hi! I'm new here & my son has finally been diagnosed with PANDAS/PITAND (after 5 yrs of misdiagnosis). We are trying to get him IVIG & having no success locally. The only way our ins will cover it is in NY State. I'm curious if anyone has had success getting IVIG on or near Long Island? Our son is 13 so we're also concerned about the age "window" of under 16 being optimal as mentioned by Dr.K on his site. Any info is greatly appreciated

 

Welcome to the forum. It sounds like you have been traveling a long road to get here. I am wondering if you have a PANDAS doctor that you are working with at all. You mention that you have to stay in NY State. I've heard good things about Dr. Eric Hollander, though I do not know if he provides IVIG. It sounds like you are pretty set on IVIG and I am going to assume that you have already tried other methods or you know that your son has immune deficiency. Dr. Hollander's address is:

 

PANDAS Center

901 Fifth Avenue

New York, NY 10024

212-873-4051

ericholl@optonline.net

 

Academic Affiliation:

Albert Einstein College of Medicine and Montefiore Medical Center

[beeskneesmommy]

You might want to look into Dr. Denis Bouboulis - he is right across the line in CT. If there are no docs who can provide IVig in NY, your insurance should make an exception. I would recommend calling his office and explaining your situation. Maybe they can help.

[tpotter]

Hi! I'm new here & my son has finally been diagnosed with PANDAS/PITAND (after 5 yrs of misdiagnosis). We are trying to get him IVIG & having no success locally. The only way our ins will cover it is in NY State. I'm curious if anyone has had success getting IVIG on or near Long Island? Our son is 13 so we're also concerned about the age "window" of under 16 being optimal as mentioned by Dr.K on his site. Any info is greatly appreciated

 

Welcome to the forum. It sounds like you have been traveling a long road to get here. I am wondering if you have a PANDAS doctor that you are working with at all. You mention that you have to stay in NY State. I've heard good things about Dr. Eric Hollander, though I do not know if he provides IVIG. It sounds like you are pretty set on IVIG and I am going to assume that you have already tried other methods or you know that your son has immune deficiency. Dr. Hollander's address is:

 

PANDAS Center

901 Fifth Avenue

New York, NY 10024

212-873-4051

ericholl@optonline.net

 

Academic Affiliation:

Albert Einstein College of Medicine and Montefiore Medical Center

 

I had never heard of Dr. Hollander before, but just googled him. Wow...he used a pig whipworm to treat a child's "worst behaviors" of Autism, and it helped. Apparently, there is research showing that it helps treat Autoimmune Disorders. Anyone else heard of treating PANDAS, Autism, autoimmune disorders this way?

[beeskneesmommy]

Here is a a large list of PANDAS docs in NY. I have to get all of my referrals updated - they are about a year old. However, it is relatively extensive, so I hope that someone can assist you or refer to a doc in state who can:

 

Dr. David S. Breindel, MD234 Elk Avenue

New Rochelle, NY 10804

(914) 235-5520

 

Elmwood Pediatric Group

919 Westfall Road

Building A, Suite 105

Rochester, NY 14618

(585) 244-9720

www.elmwoodpediatrics.com

 

Laurence R. Saul, M.D.

7 E 68th St Ste B

New York, NY 10065

(212) 327-0753

 

Karen Levine

77 Mercer Street

NYC

(212) 219-9985

 

Dr. Max April

1305 York Ave

New York Otolaryngology Associates

Floor 5

NY, NY 10021

173 Froehlich Farm Blvd

New York Otolaryngology Associates

Woodbury, NY 11797

 

Eric Hollander, MD

Director of the Compulsive, Impulsive, and Anxiety Disorders Program

Mount Sinai Medical Center

300 Central Park W

Suite 1 C

New York, NY 10024

ericholl@optonline.net

212-873-4051

Academic Affiliation:

Montefiore Medical Center University Hospital

Albert Einstein College of Medicine

 

Dr. Keri Chernuchin

485 Underhill Blvd.

Syosset NY

(516) 921-0183

 

Stefanie Weinraub Weiss (consulting under the doctor’s direction)

Slweiss25@gmail.com

(516) 641-7926

 

Amy Kelly, RN, CFNP (very good diagnostician)

Hudson Valley Primary Care

1323 Route 9, Suite 204

Wappingers Falls, NY 12590

T: (845) 298-7022

F: (845) 298-5618

 

Laurie Moran-Marsh, NP-P (Board Certified)

Northern Psychiatric Services, P.C.

11 Marshall Rd., Suite 2L

Wappingers Falls, NY 12590

T: (845) 298-4350

F: (845) 298-4354

 

Dr. Arthur Buonagpina

2627 Hylan Boulevard

Staten Island, NY 10306

(718) 351-7617

 

Alan Jacobs MD (treats young adults)

120 East 56th Street

Suite 1040

New York, NY 10022

and

359 East Main Street

Suite 3B

Mount Kisco, NY 10549

http://www.neuroendocrinology.org/

 

Dr. David Halpert (Pediatric Neurologist)

3318 South Main Street

Horseheads, NY 14845-3405

(607) 739-4289

 

Dr. Gregory Malanoski (Infectious Disease)

602 Ivy Street

Elmira,

NY 14905-1646

(607) 737-4577

 

Michael Compain, M.D.

Kenneth Bock, M.D.

Rhinebeck Health Center

108 Montgomery Street

Rhinebeck, NY 12572-1106

 

Fred Pescatore, MD, MPH, CCN

369 Lexington Avenue - 19th Floor

New York, New York 10017

212-779-2944

www.drpescatore.com

 

Dr. Kenneth Bock

108 Montgomery Street

Rhinebeck, NY 12572

(845) 876-7082

F (845) 876-4615

www.rhinebeckhealth.com

 

Dr. Stanley Weindorf

Woodbury Pediatrics

202 Terminal Drive

Plainview, NY

(516) 576-0202

Edited October 23, 2011 by Beeskneesmommy

[kimballot]

I had never heard of Dr. Hollander before, but just googled him. Wow...he used a pig whipworm to treat a child's "worst behaviors" of Autism, and it helped. Apparently, there is research showing that it helps treat Autoimmune Disorders. Anyone else heard of treating PANDAS, Autism, autoimmune disorders this way?

 

This is the "helminthic" therapy that PANDAS 16 and others have used. I believe it is quite pricey, but there may be some clinical trials going on now for which some children may qualify.

 

If you search "whipworm" in this forum you will get some threads that talk about it.

Edited October 22, 2011 by kimballot

[Petes_mom]

Hi! I'm new here & my son has finally been diagnosed with PANDAS/PITAND (after 5 yrs of misdiagnosis). We are trying to get him IVIG & having no success locally. The only way our ins will cover it is in NY State. I'm curious if anyone has had success getting IVIG on or near Long Island? Our son is 13 so we're also concerned about the age "window" of under 16 being optimal as mentioned by Dr.K on his site. Any info is greatly appreciated

 

Welcome to the forum. It sounds like you have been traveling a long road to get here. I am wondering if you have a PANDAS doctor that you are working with at all. You mention that you have to stay in NY State. I've heard good things about Dr. Eric Hollander, though I do not know if he provides IVIG. It sounds like you are pretty set on IVIG and I am going to assume that you have already tried other methods or you know that your son has immune deficiency. Dr. Hollander's address is:

 

PANDAS Center

901 Fifth Avenue

New York, NY 10024

212-873-4051

ericholl@optonline.net

 

Academic Affiliation:

Albert Einstein College of Medicine and Montefiore Medical Center

[Petes_mom]

We've been working with Dr. Trifiletti in NJ since August, my son appears to be a very extreme case or have something else co-existing. Oh, and thanks to everyone who answered me! I will look into what you've given me here. We did Biaxin 2000mg/day for 3 wks but had to stop because Pete was having terrible emotional distress (an uncommon but documented side effect). Then we tried just Prednisone short burst for 5 days 100mg/day. That worked VERY well but only for about 4 days (didn't see any improvement until the 10th - 12th day after the start date of the Pred.) Then we tried again with the Biaxin together with Prednisone - supposed to be for a month but he only lasted a week due to the Biaxin side effect again & the Pred that time seemed to be making him feel sick. It was 100mg for 1week then supposed to taper down over a month.

 

Anyway our son seems to have T cell issues - doing more testing now along with a mitochondria test. He has extremely severe muscle spasms - it looks almost like someone is electrocuting him or "zapping" him with some kind of remote control, constant feeling of fear, vocal tics, unable to sleep, had very extreme intrusive thoughts constantly for about 2 years, his memory & math, handwriting & overall cognitive function are becoming more affected all the time, vision disturbances, he's unable to attend school & he used to be very good in school. This started in 2006 when he was 8. He's now 13, 5'10" & 200lbs. so IVIG will cost us a LOT if we have to go out of state but he's suffering so much I feel like we have to try before he gets much older if the age factor is true. Even if it helped a percentage of his symptoms it would be a relief. Sorry for the rambling! Does anyone have opinions/experiences re: IVIG?

Edited October 23, 2011 by Pete's mom

[Dedee]

It sounds like your son is really suffering. I am so sorry your family is going through this. I am sure you are willing to do what ever is necessary to help your son. You are right, because of his weight, IVIG will be expensive. Since he is such an extreme case you may be able to get PEX approved. Because of the length of time he has suffered and because of his age, I would think you would get better results with PEX than IVIG. IVIG is going to be an expensive procedure anyway at this point, and chances are he would need more than one. We have done 2 IVIG's and most likely will need a third. So in hindsight, it may be cheaper in the long run, to do one PEX and then possibly one IVIG and get maximum results, than three IVIG's and still not be 100%. JMHO. Best of luck....

 

Dedee

[LNN]

Your son's tics sound like what we dealt with. At his worst, DS couldn't hold a glass of milk b/c he'd jerk so severely that milk would go flying across the kitchen. He looked like he was being tasered. He occassionally would "freeze" mid-stride or mid-sentence. He would make the whole table shake if his hands were on it.

 

Many have found HD IVIG to be very beneficial. We are in the minority where it led to a worsening of symptoms and a very slow recovery. We never saw any benefit, even temporarily. We have lyme as a co-factor, but even so, many lyme families don't seem to struggle with IVIG the way my son did. In his case, he seems to have a very hard time whenever the "cure" gets too aggressive - his body can't seem to get rid of bacterial toxins (from the die-off) fast enough and it produces symptoms worse than the cure. So we need to go slowly and do a lot of liver support. He also has a condition known as pyroluria - a zinc/B6 deficiency. Zinc is the immune system's bullets and B6 is a player in the methylation cycle, which is a precursor to seratonin production and the body's detox pathways.

 

You may want to ask Dr T about methylation and transsulfuration pathways and get his thoughts on detox. If these systems aren't working properly, you could end up giving your son's body more than it can handle with a HD IVIG. The only reason I mention this is that it's possible that what you saw with the biaxin may not be a reaction to the abx but to the body's struggle to detox the die-off toxins. I know this sounds like a postcard from nut-ville, but I've come to appreciate that in kids who have been ill for a long time, there's probably more than one thing gone awry. Untangling the mess probably requires a slow and steady support program as a precursor to any aggressive treatments. Something to consider while you navigate the IVIG avenue.

[Debbie1]

Hi! I'm new here & my son has finally been diagnosed with PANDAS/PITAND (after 5 yrs of misdiagnosis). We are trying to get him IVIG & having no success locally. The only way our ins will cover it is in NY State. I'm curious if anyone has had success getting IVIG on or near Long Island? Our son is 13 so we're also concerned about the age "window" of under 16 being optimal as mentioned by Dr.K on his site. Any info is greatly appreciated

 

You can try Dr. Susan Schulman in Brooklyn. I do not know her contact info but you can google her.

[Petes_mom]

Your son's tics sound like what we dealt with. At his worst, DS couldn't hold a glass of milk b/c he'd jerk so severely that milk would go flying across the kitchen. He looked like he was being tasered. He occassionally would "freeze" mid-stride or mid-sentence. He would make the whole table shake if his hands were on it.

 

Many have found HD IVIG to be very beneficial. We are in the minority where it led to a worsening of symptoms and a very slow recovery. We never saw any benefit, even temporarily. We have lyme as a co-factor, but even so, many lyme families don't seem to struggle with IVIG the way my son did. In his case, he seems to have a very hard time whenever the "cure" gets too aggressive - his body can't seem to get rid of bacterial toxins (from the die-off) fast enough and it produces symptoms worse than the cure. So we need to go slowly and do a lot of liver support. He also has a condition known as pyroluria - a zinc/B6 deficiency. Zinc is the immune system's bullets and B6 is a player in the methylation cycle, which is a precursor to seratonin production and the body's detox pathways.

 

You may want to ask Dr T about methylation and transsulfuration pathways and get his thoughts on detox. If these systems aren't working properly, you could end up giving your son's body more than it can handle with a HD IVIG. The only reason I mention this is that it's possible that what you saw with the biaxin may not be a reaction to the abx but to the body's struggle to detox the die-off toxins. I know this sounds like a postcard from nut-ville, but I've come to appreciate that in kids who have been ill for a long time, there's probably more than one thing gone awry. Untangling the mess probably requires a slow and steady support program as a precursor to any aggressive treatments. Something to consider while you navigate the IVIG avenue.

[Jtsmama]

Was your son found to have any time of Immunodeficiency when the labs came back? If so IVIG is approved to treat Primary Immunodeficiency Disease.

[Petes_mom]

Sorry! I have to get used to the posting...Thanks to everyone for the info. LLM - maybe you've got something there. I have a consult with Dr. T. coming up & I'll ask about those. I know so little at this point & I have learned a LOT (which makes me feel really ignorant before Zithromax isn't working as well as Biaxin on symptoms so maybe you're right about the body not handling it. The Biaxin clearly helped certain symptoms very well, but the mental/emotional changes were bad. I'm worried about doing the wrong thing & it's gone on so long I can't do nothing! My DS is desperate & his mind is being affected more & more in the past 2 months - since abx & steroid. His coordination is affected recently. Broke a dish because his hand wouldn't grip it when he thought it would. Knocking over drinks when going to pick them up. And in the AM every day on waking his vision is extremely blurry for the first 20minutes - the vision he says has "always been that way"....but he can't remember before PANDAS/PITAND anymore. Any other suggestions as to what we may be able to look at or test for? Lyme neg. So far every test has been neg. One Autism Spectrum came up inconclusive so we'll redo that. Just did Mitochondria & T cells, Cytokines. We have an appt to see Dr. B in Dec. Thanks so much!

 

 

Your son's tics sound like what we dealt with. At his worst, DS couldn't hold a glass of milk b/c he'd jerk so severely that milk would go flying across the kitchen. He looked like he was being tasered. He occassionally would "freeze" mid-stride or mid-sentence. He would make the whole table shake if his hands were on it.

 

Many have found HD IVIG to be very beneficial. We are in the minority where it led to a worsening of symptoms and a very slow recovery. We never saw any benefit, even temporarily. We have lyme as a co-factor, but even so, many lyme families don't seem to struggle with IVIG the way my son did. In his case, he seems to have a very hard time whenever the "cure" gets too aggressive - his body can't seem to get rid of bacterial toxins (from the die-off) fast enough and it produces symptoms worse than the cure. So we need to go slowly and do a lot of liver support. He also has a condition known as pyroluria - a zinc/B6 deficiency. Zinc is the immune system's bullets and B6 is a player in the methylation cycle, which is a precursor to seratonin production and the body's detox pathways.

 

You may want to ask Dr T about methylation and transsulfuration pathways and get his thoughts on detox. If these systems aren't working properly, you could end up giving your son's body more than it can handle with a HD IVIG. The only reason I mention this is that it's possible that what you saw with the biaxin may not be a reaction to the abx but to the body's struggle to detox the die-off toxins. I know this sounds like a postcard from nut-ville, but I've come to appreciate that in kids who have been ill for a long time, there's probably more than one thing gone awry. Untangling the mess probably requires a slow and steady support program as a precursor to any aggressive treatments. Something to consider while you navigate the IVIG avenue.

[Petes_mom]

So far we haven't found a specific immune deficiency condition, but I think that's what we're still looking for among other things. He's always has terrible immunity & 1 category in T cells looked bad which is why we did the last tests. This is the strangest thing & it seems like there are so many options of what could be wrong.