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amother




OP
 

Post Tue, May 17 2022, 8:22 am
Its been a very long journey so far.
My dc is 8. I've posted here a lot over the years. Her behaviours are hard and emotionally and physically I'm drained. She offically gets aba in school and I'm under the guidance of a bcba who I speak to weekly. She is officially diagnosed with asd. Recently checked for pandas and her strep levels were super high. The pediatrician recommended 10 days of antibiotics. During those 10 days it was a little scary how well she was acting. My heart was soaring I was thinking that's it! This is the end of our journey. I was so happy and life was so much easier. I was able to be present for my other children and myself etc...
Anyway its day 2 post antibiotics and I see her reverting back to old days and I just want to cry worse then before! What should I do now?? I'm so overwhelmed! I will call pediatrician but I'm just hopeless. Is there a dr that specializes in this that can guide me? (Lakewood area)
I'm sorry if I'm rambling I'm just so down
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amother




Thistle
 

Post Tue, May 17 2022, 9:35 am
If she has pandas , she needs antibiotics for longer than 10 days.
And based on how she responded, she likely has it.
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amother




OP
 

Post Tue, May 17 2022, 11:07 am
Thanks for responding! We use dr shanik and even he agreed we must use anti biotic that's how high her levels were. I want to go to a pediatrician that is extra knowledgeable in this area and can guide me.. any suggestions?
I like dr shanik but hes not really "into" pandas
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amother




Cobalt
 

Post Tue, May 17 2022, 3:35 pm
OP you will need a lot more than 10 days of antibiotics or pandas. Here are some ideas for how to get more:
Beg dr Shanik or someone at his office for 30 days with refills.
Try PA Beren, he is pandas literate and usually very accommodating with prescribing 30 days of abx at a time, sometimes with refills, but you need to present it the right way.
I know someone whose kid was being treated for pandas with long term abx by dr fenster, so may be worth a try seeing if you can get into him.
You can try one of these virtual telehealth places, or some mail order place where you don’t need an rx.
You can try otc herbal antibiotics like biocidin, olive leaf extract and oil of oregano, we’ve personally seen success with these.
If you are willing to pay $$$ you can see a pandas specialist in the area like dr trifiletti, dr Bock, dr. Frid, dr Elice, dr de Antonio, dr neubrander
You can try dr jyonouchi in New Brunswick, she takes insurance but isn’t a fan of long term abx, she does more ivig.

Also, until you’re able to get her back on some kind of antimicrobial, you can do motrin, Benadryl (or zyrtec/claritin) and robitussin around the clock to temporarily control the inflammation.
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amother




OP
 

Post Wed, May 18 2022, 9:36 am
Thank you for all thay information wow!
We went to dr shanik (saw him) explained the situation and he prescribed another 30 days of antibiotics.
I'm just wondering is this healthy? I know she needs its but its sounds scary to be on antibiotics so long. Also what happens after day 30? I dont want to get my hopes high but will she be a changed kid after ? Seems unrealistic and like a dream. But if shes the same then whats the point and then what's the next step. Wow this is confusing. Thanks everyone for taking the time to respond
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amother




Cobalt
 

Post Wed, May 18 2022, 3:53 pm
amother [ OP ] wrote:
Thank you for all thay information wow!
We went to dr shanik (saw him) explained the situation and he prescribed another 30 days of antibiotics.
I'm just wondering is this healthy? I know she needs its but its sounds scary to be on antibiotics so long. Also what happens after day 30? I dont want to get my hopes high but will she be a changed kid after ? Seems unrealistic and like a dream. But if shes the same then whats the point and then what's the next step. Wow this is confusing. Thanks everyone for taking the time to respond
Long term antibiotics can’t be called “healthy”, but neither is a steady immune assault on the basal ganglia in the brain, aka pandas, so it’s a pick your poison kind of situation, and personally I pick long term antibiotics. Saying this as someone who is as “crunchy” as they come and was very ideologically opposed to antibiotics for a very long time.

There is also the option to address it holistically using herbs, diet and supplements but you need extensive knowledge and resources to do it this way, which most of us don’t have.

In terms of how long it’s going to take, chances are 30 days won’t either be enough. My kids have been on antibiotics for months at a time, and there are kids who take it for years.

Honestly though, it most cases it ends up being a bandaid and a roller coaster you can’t get off of. For deeper healing to happen, you will also need to address the immune dysregulation, in other words, teach her immune system to react to strep in normal ways and not mistakenly attack the brain. This is usually done using ivig, LDN, and other immunomodulators. And even deeper, the *why* for the immune dysregulation, which can have many reasons but often starts in the gut. Which is done via diet, ferments, probiotics, minerals and fat soluble vitamins.

Also important to address any other infections that may be going on, most kids have more than one, and other sources of inflammation such as mold, allergies and sensitivities.
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amother




Wine
 

Post Wed, May 18 2022, 4:28 pm
I don't live in Lakewood but I have heard from my friend there that Dr. Eilenbergh treats pandas and that ppl come to him special for that. Hatzlocha!
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amother




OP
 

Post Thu, May 19 2022, 12:22 pm
Another cobalt from all those drs is there one that you specifically recommend?
Anyone else have good experiences with specific pandas drs?

When you say about the eragano oil etc is that something I just give myself or is there a certain protocol?
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amother




Cobalt
 

Post Thu, May 19 2022, 2:39 pm
amother [ OP ] wrote:
Another cobalt from all those drs is there one that you specifically recommend?
Anyone else have good experiences with specific pandas drs?

When you say about the eragano oil etc is that something I just give myself or is there a certain protocol?
I don’t have personal experience with all of them, and I’m sure they each have different areas of strengths , but if I had to pick one and money and proximity wasn’t an issue I would go see Dr. Bock.

Also because dr jyonouchi takes insurance and does telehealth, it can’t hurt scheduling an appt with her.

Oil or oregano and olive leaf extract doesn’t have a specific protocol. I use the ones from Gaia and give 1 capsule of each 3x a day. I find this extremely effective together with motrin and claritin.
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