IVIG for PANDAS/PITAND

[Petes_mom]

LLM - One other question. What is HD IVIG? I've only seen it called IVIG. Is the HD something different? Thanks.

[cab40]

Success stories?

Edited March 23, 2012 by cab40

[Jtsmama]

My son has a diagnosis of SAD too. We have done lore dose ivig for 3.5 yrs. Feel free to pm me with any questions.

[MSmom]

Wow, thanks for this. This may explain why my daughter reacts so badly to long term abx (mentally) and to HD IVIG (physically and mentally.) She has many physical issues (autoimmune (Sjogren's antibodies) and metabolic), and we know for certain she has methylation issues (from DAN doctor), but I never connected this with the abx and IVIG problems. I did suspect that high dose IVIG was too much for her body. My daughter (and son) have been ill for over 10 years. They are young adults now. They have many issues going on, and we are beginning to lose hope. We don't know what else to do, since we've tried both abx and IVIG. Both of my kids are on many supplements, and we know for certain they are detoxing slowly, which the DAN doctor is addressing. They do improve on the supplements, but we need more. Winter is the worst, because they pick up infections. (They react with PANDAS symptoms to ANY infection now, not just strep. My daughter could not even wear invisalign braces, because the microtrauma in mouth from it set off her immune system. Not sure if there is hope for this severe of an issue.

 

MsMom

 

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.

[bws]

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

 

 

Thanks for this list!

Anybody have personal experiences with any of these? Do they accept insurances?

[Joan Pandas Mom]

Hi. We were 6 years misdiagnosed. My DS required 8 High Dose IVIGs, long term abx and intensive CBT to undo the incapacitating OCD. He is doing great now. Good luck and don't get discouraged if 1 or 2 IVIG's don't do the trick. With my son it took the combination of everything mentioned above and almost two years to get there, but we did get there.

[EAMom]

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?

 

can you try another antibiotic?

Azithromyin (that can be good if there is mycoplasma)?

Augmentin?

[Burnell]

We are tyring IVIG again. it took 8 months to get it insured. meanwhle our DD 12, has been seeing a psychatrist. The 2 meds form him made a 50% lessening of her OCD and tics. However, that came with some weight gain and other side effects. But psychiatic care is ususally all covered and quicker to get for some relief. Take the time to see if you can get ivig insured. It costs over $12,000 per treatment.

[patric]

We are tyring IVIG again. it took 8 months to get it insured. meanwhle our DD 12, has been seeing a psychatrist. The 2 meds form him made a 50% lessening of her OCD and tics. However, that came with some weight gain and other side effects. But psychiatic care is ususally all covered and quicker to get for some relief. Take the time to see if you can get ivig insured. It costs over $12,000 per treatment.

[patric]

Hi burnell,

Can you explain a little how you got insurance to pay? We paid up front a year ago and are still fighting the insurance company to pay. Any tips or codes would be appreciated!