PANDAS- Anyone completely cure it? Does it always come back?

amother

Indigo

Mon, Jan 23 2017, 1:40 pm

*sigh*

We have been dealing with pandas for a while now. The zithromax helps but only for some time. it always comes back.

have any of you been able to successfully cure it? is it by giving antibiotics for a long time? how long?

Is this worth a trip to dr schulman? will she do a year of antibiotics? not thrilled about that, but if its the only way, and my question is, does it last? or does it still come back?

Please share from your experience.

Thank you.

amother

Pink

Mon, Jan 23 2017, 2:54 pm

We took our daughter and son to dr. Schulman a few years ago. We bh saw quick results with my daughter but it didn't work for my son. She charges 500 for the consult. She's just going to go over everything in terms of symptoms, when it started and all that stuff. It's kind of a waste of time because in the end she will prescribe Zithromax and this all could have been done in an email or 5 minute meeting. Also, I'm pretty sure she does either 1 or 1.5 months of Zithromax, not a whole year. I also remember her telling us that of its PANDAS, the longer it goes untreated, the more difficult it will be to eventually treat.
What type of symptoms is your daughter having? My daughter started getting obsessive, literally overnight, about kissing mezuzah 100x a day, it would take her 20 min to say shema be4 bed. It was very sad.
I hope things work out for you!

amother

Indigo

Mon, Jan 23 2017, 3:07 pm

her symptoms are behavioral- screaming, yelling about everything, you could be having a pleasant conversation with her and she'll start yelling suddenly, almost seems possessed. also some obsessive behaviors- has to be pushed in to the table a very specific amount, no more no less, if touches something she insists on washing her hands, but doesnt want to wash her hands and has an internal struggle, etc and so much more... aggression, etc.
3 years old. clearly related to pandas.

amother

Lime

Mon, Jan 23 2017, 4:34 pm

amother wrote:

Why do you think this is pandas ?

amother

Red

Mon, Jan 23 2017, 4:38 pm

We went to Schulman. My child was on zithromax a year and it did nothing. I was disappointed in her cookie cutter approach, and that several years later they lost his lab results (should keep it until a child is 19 legally)

I turned to diet and lifestyle after that year and that did the trick. The medical world will not acknowledge the impact a healthy diet has on the body and autoimmune system. But they are wrong, sorry, but this I am sure of.

My child also had the rages, tempers etc to an uncontrollable extent. A slight tic but no obvious ocd, but anxiety which is closely related.

We did the Gaps diet. I would recommend a consult with Dr. Lawrence Palevsky. He is very informed on how to help kids with inflammation and autoimmune issues like these.

And one more thing. Not trying to push my ideas on anyone but I would urge you to consider educating yourself in vaccines and how they can cause autoimmunity. Just do it with an open mind and you will be astounded. (And probably not want to vaccinate your child's fragile body anymore)

Good luck!!

amother

Hotpink

Mon, Jan 23 2017, 7:03 pm

I also took my child to Dr. Schulman and did antibiotics for over a year. My son also tested positive for lyme disease and was treated with 2 months of doxycycline. During treatment, we also saw social worker and did OT weekly.
We started SCD diet about a year ago and saw the most progress with that. My son no longer attacks me or his siblings and all his tics disappeared, thank G-d.
However, anytime he gets sick, he has a regression, but nothing like his original symptoms.

amother

Red

Mon, Jan 23 2017, 7:15 pm

amother wrote:

YES! btw, the Gaps diet is virtually the same as scd but there's an added focus on juicing/detox and probiotic/fermented foods that heal the gut. OP, definitely look into this!

amother

Seashell

Mon, Jan 23 2017, 7:22 pm

I went to Dr. schulman after having bad OCD symptoms every time I got sick. She didn't really help me because I aged out of her office and I was already by an adult doctor. She told me its very likely I have it. I had to take a blood test that cost me $100 because it had to be done in a lab and I didnt have strep thank goodness. I feel I spent $400 for nothing because she didn't tell me any diagnosis she said if you want you can do IVIG. I know Dr. Baila Sandhaus from Dr. Adler's office is very into Pandas these days.
Azithromycin helps, also going off sugar and dairy is a big factor.
IVIG which is transfusions of antibodies isn't always successful and its not hygiene. Hope you find a solution quickly. If the latter don't work then I would recommend Dr Schulman

yogabird

Mon, Jan 23 2017, 7:53 pm

amother wrote:

Amother would you mind PMing me?

amother

Mint

Mon, Jan 23 2017, 9:44 pm

Dr shulman is a lifesaver. My DS was having terrible barking tics a my pediatrician said he definitely had Tourettes but we knew that that didn't make sense. He was diagnosed with Pandas by dr shulman and within a few months on Sandoz Zithromax he was all better. Yes there are minor regressions every time he gets a cold but never the horrible tics. Only minor sniffles. Gine within a few days after the onset of a cold.

amother

Cerulean

Mon, Jan 23 2017, 10:17 pm

amother wrote:

Why is that clear? Sounds like abuse to me.

amother

Forestgreen

Mon, Jan 23 2017, 10:29 pm

We fought PANDAS really hard! We tried all types of antibiotics, which didn't work so well. The natural route alleviated symptoms a bit. We ended up doing IVIG and bh about 3 months later we started to see results. He is on long term antibiotics now and still flares when a sibling or classmate gets strep.
He is not 100% cured but bh the hard part is over. We can breathe again and be a normal family.

amother

Copper

Tue, Jan 24 2017, 1:28 am

Don't push off getting treatment. We did for years as it flared on and off and it wasn't worth it to push off. The sooner it's treated the quicker and easier it is to get better.
We treated with antibiotics for a year. Completely burned off tonsils (not shaved like most tonsillectomies).
Got much better bh. Things aren't perfect but dd is by nature an anxious child.