NancyD

I always wondered why dd could never take most probiotics, especially culturelle. Always made her rages worse and she was extremely hyper. The only probiotic she can take (and has been taking for 10 years) is Bifido Factor. Nancy

Harvard Pilgrim HealthCare covered IVIg for PANDAS 100% up until February. All of a sudden they changed their policy claiming insufficient data to support it. I'm appealing now and should have a good chance since they have been covering it for dd for 1 1/2 years and it has been highly successful for her. It really froths me! Nancy

No, the 18-month-old who is pacing back and forth in her crib is my dd. I gave frontline permission to use footage of four kids (including my dd) from a film I produced on autism 10 years ago but they ended up using footage of a child for which I never gave them permission. So I'm not happy with them right now, especially having seen the outcome.

We had our first appointment with Dr. L last week. It was an exhausting trip...18 hours of driving in 2 days. Nearly had to hospitalize dd before we left for Bethesda. Severe rash all over her trunk (plus something nasty looking on her back that I thought looked like impetigo), combined with long rages and abusive behavior. I had taken her to pediatrician's and asked if it was scarletina, impetigo, or pityria rosea. Was told it was probably due to "first-time exposure to sun". I knew it was not that! I was VERY IMPRESSED with Dr. L! She took her time, was very thorough, asked insightful questions, and seemed very open minded. She said the rash is definitely pityria rosea (mother spot on back). Unfortunately there is nothing we can do for that and it will take about 6-8 weeks to go away. She agreed we should take a break from the monthly infusions to let the antibodies settle and see what happens. Told us that dd14 has "catastrophically" low D levels and put her on 50,000 units per week. Also put her on 1000 mg XR Augmentin 2x daily and so far, she is doing great on it! After a horrible two weeks dd seems pretty stable. 'Course, the last high-dose infusion in March may have also kicked in. We have a follow-up call scheduled for June and will decide then if we move forward with pheresis and/or future IVIg infusions. She thinks dd will be a good candidate for pheresis. She does believe in high-dose infusions and not doing them monthly. Forjpj, it was awesome meeting you and your family and seeing how well your ds is doing! Nancy

Child's age at IVIG? Began when dd was 12. Last infusion age 14. Was child in exacerbation at the time of IVIG? First and last YES, in between NO What was the dose? First dose was 1.5g/kg over 2 days and last dose in March was 1.5g/kg in one day. Monthly infusions in between ranged from .5g/kg to 1g/kg. Now we're taking a break from infusions to see what happens. Did child have immune deficiencies at the time? Low IGG when we started but not considered immune deficient. On the high side as we continued. Post IVIG experiences? Was it initially worse or as bad as exacerbation? Dd was in such bad shape before the first infusion that we did not notice that the symptoms got any worse. Saw improvement after the second infusion and it just got better after that. Noticed a bit of a decline in the 3rd week after subsequent infusions but then saw improvement after the next infusion. Dd had one fabulous year with no rages and 95% of tics gone. Completely off Risperdal for first time in 10 years. And sleeping in her own bed for first time in 10 years. Started making friends and grades went from Cs and Ds to straight As. infusions did not help anxiety or OCD symptoms though. Unfortunely things went downhill in November after she was exposed to so much sickness. Mood dysregulation and rages came back, tics still 95% gone. After last high-dose infusion we noticed 2 good days during first week, 3 good days during second week, 7 good days during third week, and then downhill after that. She has been coming down with one skin infection after another. Dr. L diagnosed her last week with pityria rosea. Will post something separate about our visit to her.

I was sooo disappointed in last night's Frontline! I had hoped that they would produce a more balanced view and use good journalism. Instead it was more of the same. I'm sorry I let them use footage of my dd as a baby. It is nothing more than an infomercial for Paul Offit and the CDC! Nancy

Puberty definitely made PANDAS symptoms worse for dd14!

Forjpj, What time will you be there? Our appointment is at 10am. Nancy

We see her Tuesday -- hoping we can do pheresis over the summer. Nancy

Sue Swedo is chairing the neurodevelopmental disorders work group for DSM V.

As much as I hate living with the windows closed year round this seems to work best for us! Plus, we always take our shoes off as soon as we get inside (to leave the toxins and allergens outside) and we wash our hands. In addition, dd14 takes 2000 mg quercetin daily. Really seems to help. Nancy

My dd14 had mild-moderate ASD (now no longer meets the diagnostic criteria for ASD) and very severe PANDAS. She also had colitis when she was younger but we treated with GFCF diet, supplements, and monthly glutathione IVs and has since recovered from colitis. I traced initial strep infection back to age 2 (impetigo) followed by overnight onset of PANDAS symptoms one week later. Never had strep throat but lots of sinusitis and very high titers. However, PANDAS was not diagnosed until age 7 when she was placed on Penicillin and has been on it ever since. Her IGg levels were below normal range but not considered immune deficient. Her first infusion was at age 12.5 (1.5g/kg over two days) followed by monthly infusions at .75g/kg for months after. In month 3 most of daughter's PANDAS symptoms disappeared, but I cannot say whether it was due to the first high dose infusion or the monthly lower dose infusions. I have a feeling it was because of the initial high dose infusion. This past winter she had a setback and we increased dosage to 1g/kg (which did not help) and then last month to 1.5g/kg, which did help. That was 4 weeks ago and we are now taking a 3 month break to let the antibodies settle. I have definitely seen an improvement since doing the higher dose infusion. If I had to do it all over again (and now knowing that my daughter does not have a problem tolerating 1.5g/kg) I would do 2g/kg, wait 3 months, and if needed, do another infusion at 2g/kg. When I first contacted Dr. K by email over 3 years ago he was not optimistic given my daughter's age. However, thanks to IVIg I have my daughter back! Is she considered in remission? Definitely not...but the tics are 99% gone and we are no longer dealing with violent rages, which could last for as long as 2-3 hours apiece and as frequent as 1-2 times per day. She still deals with anxiety and OCD and some mood dysregulation when she is stressed. But other than Pen VK, no more Risperdal. Nancy

That's too bad that TePas is only working 1 day/week. Also, I did not know that Fuhlbrigge requires high titers. My daughter has always had very high titers so I haven't had to deal with this issue. Are you positive about this?? He has become much more open minded in the year and a half we have been seeing him. How about Raif Geha, MD, who is chief of Immunology at Children's? He does IVIg for a child I know and the child does not have high titers. By the way, worriedmommy, Harvard Pilgrim Health just changed their policy regarding IVIg as of Feb 1. They will no longer cover IVIg for PANDAS! I am appealing it now as they have been covering my daughter's infusions for well over a year and when I signed on for the insurance policy it was based on the premise that they would cover it. They assured me they did. I now have supplemental disability insurance for my daughter that will cover what HPHC will not pay, but I don't want HPHC to get away with this. Nancy

kimballot, We have been doing monthly infusions for more than 1 1/2 years. We are still doing them but we increased dosage to 1.5g/kg in March and we plan to take a 3-month break to let the antibodies settle and see what happens. I'm hoping we can do them much less frequently. Nancy

My biggest regret is waiting so long to do IVIg. Our doctor wanted us to do it when he first diagnosed my dd14 seven years ago but I could not get insurance coverage back then. If I knew then what I know now how much IVIg would help my daughter I would have paid out of pocket for it in a heartbeat. What a difference in the quality of life! Nancy

In MA: Robert Fuhlbrigge, MD at Children's Hospital Boston and Elizabeth TePas, MD at MGH for Children at Newton-Wellesley Hospital both order IVIg for PANDAS. Nancy

Red ears and cheeks and circles under the eyes are a sure sign of food sensitivity or allergy. Nancy

Ellizabeth, Thank you for sharing this article. I have been searching for over a year now for research that might explain why my dd14 gets worse every time she takes vitamin D supplements. She has very low D levels and I have tried giving her D supplements 3 times in the past 3 years. Each time her mood dysregulation and rages got worse -- and I was very careful not to change any other variable in her treatment while testing this. Nancy

Fixit, With the exception of a 3-month break after the 3rd infusion (where we did see 50% return of symptoms), we have been doing infusions monthly for 1 1/2 years. We started at 1.5g/kg over two days and then went down to .5g/kg every 28 days. As soon as we started the infusions back up again the symptoms subsided within a few weeks. All tics, rages, and mood dysregulation disappeared and she went off Risperdal completely. She started sleeping through the night in her own bed, her grades went from Cs and Ds to As and Bs, and we saw major progress with social skills. The only symptom it did not help was OCD. After her setback in November we started increasing monthly dosage of infusions to .75g/kg and then later to 1g/kg. This past month I asked that we increase dosage to 1.5g/kg and we plan to take a 2-3 month break to let the antibodies settle and see what happens. In answer to your last question, my daughter had an overnight onset of symptoms at the age of 2 within a week of having impetigo, but PANDAS was not diagnosed until she was 7. Everyone attributed the symptoms to her ASD diagnosis. She was put on daily penicillin at the age of 7 and she has been on it eversince. We have tried other antibiotics but the stronger ones cause severe yeast problems and the antifungals cause her liver function levels to rise too high. Our DAN doctor recommended IVIG 7 years ago but it took us 5 years to finally get insurance to cover it. My biggest regret is waiting so long to do IVIG. Nancy

My daughter is 14 and before starting monthly IVIG infusions her tics were really bad (both motor and vocal tics). Within 3 months the tics were 90% gone. Now they are 99% gone. Occasionally I see one little tic when she is stressed, but it is very minor. While she has had some setbacks this past winter with other symptoms (mood dysregulation, rages, and OCD), the tics have never come back. Nancy

Hi Kara, PM stands for Personal Message. If you click on my name and go to my page you will see an option in the lower left hand corner to send me either a personal message or email. Either is fine with me. I am farther north in the Newburyport area. Nancy

Hi Kara, We have been seeing Dr. Fuhlbrigge for a year and a half now and he has been great to work with, though my daughter had been long diagnosed with PANDAS. We get our IVIG infusions through him at the Waltham Infusion Center of Children's. We live north of Boston. If you'd like to PM me, please feel free to. I'm happy to help you any way I can. Nancy

Melatonin is a lifesaver! We've been using it for many years. I even take it if I have trouble falling asleep. My daughter wanted to stop taking it recently to see what happened and the other night I discovered she was chatting on Facebook until midnight. Now the internet is turned off at 8pm and we might just have to go back to Melatonin... Nancy

I highly recommend Quercetin, a plant-derived flavonoid that is used as a nutritional supplement. Studies show it has anti-inflammatory and antioxidant properties. I find it really helps with allergies and colds. We use that plus Ocean Sinus Irregation, which really cleans you out! My daughter takes about 2000 mg of Quercetin per day. It's one supplement we can't be without. Nancy

I NEVER thought I would get my daughter out of my bed, but I did (finally) at the age of 13. And I tried EVERYTHING. Even tried to bribe her with a cell phone, which she desperately wanted. I used to love going on business trips so I could have the bed to myself. Then one day (about 3 months after starting IVIG) she informed me that it was too embarrassing to be sleeping with her mom. 'Course, by then, all bets were off with the cell phone (limited time offer...phew!). Never would have happened without IVIG. Same thing with the violent rages and oppositional behavior. All part of the PANDAS. Dr. K is definitely the right way to go. Good luck! Nancy