PANDAS doctors | Imamother

amother

Lemon

Thu, Dec 20 2018, 12:27 am

If it's a really classic mild case perhaps Dr Rivka Stein 718.686.8400 will treat. But anything beyond that she will likely refer you to Dr Schulman. She works closely with her.
I have used both of them and am very happy with both doctors albeit since Schulman is the real expert on PANDAS I will recommend going to Schulman.

amother

Slategray

Thu, Dec 20 2018, 1:04 am

I hope im not hijacking this thread but why do you need only a dr like dr schulman? My pediatrician (not in boro park) is treating my daughter for pandas how would I know if he's managing correctly or not?

amother

Olive

Thu, Dec 20 2018, 8:54 am

OP here. I have used Dr Schulman in the past for pandas but found that she didn’t try to see if the problems are strictly pandas or the kid has different issues too...I’m looking for a knowledgeable doctor that’s open to treating pandas and the kid as a whole...dunno if I’m explaining myself well...
Anyone know if any doctors at Dr. Diamonds office can offer that?

Thanks

amother

Olive

Thu, Dec 20 2018, 9:03 am

I’ll try to be more specific with my experiences...dr schulman put my kid on Zithromax and when that didn’t fully help added augmentin, that helped at first and all was well, the next time kid had a flare up we tried Zithromax, didn’t help, so added augmentin and the kid got wayyyyy worse, I stopped all meds and Bh symptoms improved mostly but didn’t disappear. Over time Bh kid got to a very very good place...now every time another one of my kids get strep this kid flares up again. I need someone that’s willing to help me but not push antibiotics relentlessly. I’m willing to try antibiotics but not ping term. I know patients of Dr Schulman that are on Zithromax for years...don’t want to go in that direction

Cmon be nice

Thu, Dec 20 2018, 9:22 am

amother wrote:

Some doctors dont really believe in Pandas or even if they do dont know how to treat it. I thought my son had pandas and the pediatrician referred us to dr shulman. She's the known expert in this

amother

Slategray

Thu, Dec 20 2018, 9:28 am

Are you on a medicaid type of insurance. My pharmacist is insisting insurance won't pay for antibiotics for pandas for a long term dose. Are you getting it covered by insurance for more than 10 days?

amother

Red

Thu, Dec 20 2018, 9:32 am

Dr. Itchie statfeld in Williamsburg is LLMD. He will test for lyme etc...he is a lyme expert and also uses shulmans protocol but will not do ivig. He has a natural approach and adds lemon and grapefruit seed extract and Epsom salt baths when in flare.
You can try him. Very nice and responsive.

amother

Olive

Thu, Dec 20 2018, 9:44 am

amother wrote:

Thank you so much! Do you anyone that was successful using him for PANDAS? Also what does LLMD stand for? Do you have his contact info?

amother

Olive

Thu, Dec 20 2018, 9:46 am

amother wrote:

Are you on a medicaid type of insurance. My pharmacist is insisting insurance won't pay for antibiotics for pandas for a long term dose. Are you getting it covered by insurance for more than 10 days?

Yes on Medicaid type insurance, sometimes the insurance would pay, other times I paid out of pocket, if I remember well it was like $20 for 10 days

amother

Hotpink

Thu, Dec 20 2018, 11:10 am

amother wrote:

Are you on a medicaid type of insurance. My pharmacist is insisting insurance won't pay for antibiotics for pandas for a long term dose. Are you getting it covered by insurance for more than 10 days?

We had a Child Health Plus HMO and Dr. Schulmans office knew how to get it pre-approved for 3 months at a time and then the insurance company needed them to prove need again every once in a while. DC was on it for a year. It was a hassle every time but the doctor's office worked it out within a week each time.
They also had to get approval for the specific brand name Sandoz azithromycin that has the anti-inflammatory properties necessary for PANDAS, because insurance preferred to cover the generics which are no good for this.

amother

Amber

Thu, Dec 20 2018, 11:17 am

Sorry to highjack but anyone know a Fidelis doctor in the Monsey area or Westchester that treats PANDAS

My daughter years ago tested positive for strep doctor tried a few rounds of antibiotics. It helped some but would return and my daughter developed OCD and some anxiety. Now my doctor told me it is not working and should take her to a psychiatrist who deals with OCD. I really don’t want to do that also many years ago when she was little she tested positive for Lyme disease so I’m wondering if it’s all connected I would like to find a doctor that is knowledgeable in this area who I could go to.

amother

Hotpink

Thu, Dec 20 2018, 11:18 am

amother wrote:

Was the child cured with his help or are you stilp dealing with PANDAS?

amother

Red

Thu, Dec 20 2018, 1:01 pm

My child isn't cured because he is very susceptible to other people getting I'll and with large family bh, he flares up very often. And also refuses to take the meds and lemon etc. If u have more control of younger child, ur child can get better..Also, we were unable to more bloodwork after summer due to severe anxiety and have no way to tell if there is lyme now as well.
U can Google him for his number.

amother

Hotpink

Thu, Dec 20 2018, 1:17 pm

amother wrote:

That's what I figured. I have yet to hear of an absolute "cured" case of PANDAS.

amother

Olive

Thu, Dec 20 2018, 2:40 pm

amother wrote:

How old is your son? My kid is 7. I’m wondering if kids ever outgrow PANDAS or it’s a lifelong issue.

amother

Hotpink

Thu, Dec 20 2018, 2:59 pm

amother wrote:

How old is your son? My kid is 7. I’m wondering if kids ever outgrow PANDAS or it’s a lifelong issue.

I don't believe it's lifelong but my experience is that it's up and down in childhood.
My suggestion is to take care of it and not neglect it or allow it to c"v grow into something lifelong, but be realistic about expectations.
-Remove tonsils (full burn out removal - not scrape)
-Do a year of antibiotics monitored under someone well trained who can assess progress to knock out whatever you can. If child continues to see progress on the antibiotics after a year, continue with it until it's maxed out.
-Take serious caution to avoid people with strep or who have keep having recurring strep (don't do play dates with them)
-Take the child to CBT to learn how to deal with anxiety and be able to deal with flare ups
-Use Motrin as anti-inflammatory during flare ups and use high doses of high quality omega 3 daily even and especially when well

The earlier treatment is started, the more of a chance the child has in knocking it out for good quickly.

amother

Slategray

Thu, Dec 20 2018, 10:00 pm

Is it at all possible to only need a month of antibiotics? My dr just prescribed my daughter meds for one month. We are on day 2 and I'm seeing a difference but I'm scared to stop after a month if it's not sufficient for the long term but the symptoms will have settled?

amother

Olive

Thu, Dec 20 2018, 10:16 pm

amother wrote:

I’ve had kids on antibiotics for 2 weeks and it helped completely Bh, till the kid got strep again Sad

Anyone successful have a doctor from the Boro Park Pediatric group (dr diamond) guide them with a PANDAS kid?