Pandas?? What is the next step?

amother

Mon, Nov 13 2023, 9:14 pm

Update here my dr prescribed azithromyzin for 30 days. I'm falling apart I do not see any improvement in DD it is so sad for me to watch her she is extremely anxious, has complete meltdowns, sometimes she'll even hit me and then look shocked at what happened and say "are you ok?" She's complaining her head and stomach hurt and cries that she does not want to go to school...

Any chizuk I feel so sad like where did my happy easygoing, delicious child go Hashem?? Crying

Re vitamins which ones are recommended?

amother

Firethorn

Mon, Nov 13 2023, 10:00 pm

amother Linen wrote:

Bloodwork is a good idea so you know which infections you’re dealing with
ASO and anti-dnase b for strep, rheumatic fever profile

Igm and igg for the following:
Coxsackie
Cmv
Ebv
H1n1
Parvovirus
Mycoplasma
Herpes simplex

Western blot and pcr for Lyme

Also a good idea to get a full thyroid panel, full celiac panel, cbc, cmp, environmental and food allergy panels.

Make sure you get a copy of all the results so you can see them for yourself.

I'm having the same issue as op and I'm desperate to find out what's going on.

How do I get a prescription for all this? I use dr shanik in Lakewood and he's not into this stuff Mad

amother

Slategray

Mon, Nov 13 2023, 10:05 pm

amother Firethorn wrote:

I'm having the same issue as op and I'm desperate to find out what's going on.

How do I get a prescription for all this? I use dr shanik in Lakewood and he's not into this stuff Mad

Go to pa Weiner. She helped me so much when my son went thru this. She’s so patient listens and really guides you.

amother

Mon, Nov 13 2023, 10:15 pm

I'm in precious health and Dr Kaplovitz is really fantastic doing the course of 30 days of zithro but not seeing any improvement.

Should I be giving vitamins as well?

She's complaining her stomach hurts I feel so bad bec I know zithro can be so tough on the stomach

amother

Whitewash

Mon, Nov 13 2023, 10:17 pm

amother OP wrote:

Re vitamins which ones are recommended?

Someone on another thread (a while ago) recommended to me a turmeric gummy. DS doesn’t love it but I have really seen an improvement in his behaviors. It was not overnight magic - took time - a good couple months. And now that it was finally noticeable he had another flare up and got strep again…

amother

Mintcream

Mon, Nov 13 2023, 10:19 pm

amother OP wrote:

Re vitamins which ones are recommended?

First I want to send you hugs!
I am going through this with my dd now, I can write word for word your exact same posts!
I am at my wits end!
I did reach out to the PA that took over Dr Schulmans office but she is a fortune, $900 just for consult and each follow up is $500 which I believe she said dd would need at least 3 follow ups. I don’t have this kind of money now and I don’t know where to turn. Anything I want to do, even the natural route is so much money! Wish there is someone to go to who doesn’t charge a mint or who takes ins. Sad

amother

Mon, Nov 13 2023, 10:23 pm

amother Whitewash wrote:

I saw that one did youdo it along with the antibiotics?

amother

Mon, Nov 13 2023, 10:24 pm

amother Mintcream wrote:

Hugs back it is so painful to watch..
Yes same here...

amother

Firethorn

Mon, Nov 13 2023, 10:26 pm

amother Slategray wrote:

Go to pa Weiner. She helped me so much when my son went thru this. She’s so patient listens and really guides you.

Thank you. Does she only go the medical route like antibiotics or is she open to natural also?

amother

Whitewash

Mon, Nov 13 2023, 10:29 pm

amother OP wrote:

I saw that one did youdo it along with the antibiotics?

Yes. We did 2 10 day courses of antibiotics and then stopped. And continued gummies (indefinitely right now). He’s just getting off abx again for his current strep infection and we’ll see how it goes.

amother

Mon, Nov 13 2023, 10:30 pm

amother Whitewash wrote:

Thnx just ordered them I'm davening it should help

amother

Whitewash

Mon, Nov 13 2023, 10:34 pm

amother OP wrote:

Thnx just ordered them I'm davening it should help

Hatzlacha. It really did take a good 2 months to really see the symptoms subside. But his anxiety and impulsivity really came down.

amother

Tanzanite

Mon, Nov 13 2023, 10:54 pm

I couldn't get a diagnosis from the only PANDAS specialist in our area because my son has other stuff going on which looks a lot like PANDAS so without bloodwork, the specialist decided all the symptoms were related to the other stuff. He only tried long term abx and steroids, neither of which did anything so he refused most bloodwork except strep/dnase.

What do you imas think? Should I find a diff specialist and pursue it further? Our life is EXTREMELY difficult, but maybe it's not PANDAS. But if someone would just run a freakin Cunningham Panel and PROVE it isn't, maybe I wouldn't be so upset.

Those of you whose specialists DID bloodwork, was it a full Cunningham Panel, and what does that include?

amother

Floralwhite

Mon, Nov 13 2023, 10:59 pm

amother Tanzanite wrote:

Imo the Cunningham panel is a waste of money . The test doesn't say why there is inflammation and what the cause is. We don't need a test to say there's inflammation, we know there is based on the behavior! It's really pointless and expensive.

Another homeopathy mom here. We use resilience naturopathic in CA. They do zoom. It's expensive. But it's not compared to the functional meds we tried first with all the labs and the supplements and the Dr appts which were not covered by insurance.

anon23

Tue, Nov 14 2023, 8:04 am

It took a good 3 MONTHS for us to see improvement on zithromax, but my son is a completely different child now. Do not give up after 30 days! He is basically back to the delicious, easygoing, non-anxious child he was before. We are starting the weaning process soon.

amother

Tue, Nov 14 2023, 9:37 am

anon23 wrote:

Wow thank you so so much this is giving me so much chizuk!

amother

Linen

Tue, Nov 14 2023, 9:39 am

anon23 wrote:

I wouldnt want just yet... unless you have herbal antibiotics in place for when you come off azith. Or some other way to keep the strep away. Speaking from experience.

amother

Linen

Tue, Nov 14 2023, 9:41 am

amother Tanzanite wrote:

Yes, don't give up, find another provider, preferably someone with a background in functional or integrative medicine. But don't waste your money on the Cunningham.

anon23

Tue, Nov 14 2023, 9:58 am

amother Linen wrote:

I wouldnt want just yet... unless you have herbal antibiotics in place for when you come off azith. Or some other way to keep the strep away. Speaking from experience.

Do you have any recommendations?