Pandas?? What is the next step?

amother

Tue, May 16 2023, 9:41 am

DD 4 has been acting completely not herself behaviorally. She was generally a calm child now she has meltdowns and tantrums at the slightest provocation I don't recognize her.

She tested negative for Strep. When I give her Motrin I do find she acts better.

She does not have the other symptoms of Pandas, TICS, bedwetting it is mainly behavioral.

My question is what should my next step be? Should I run bloodwork? If yes what should I make sure is included?

amother

Linen

Tue, May 16 2023, 9:49 am

amother OP 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.

amother

Tue, May 16 2023, 9:52 am

amother Linen wrote:

Wow thank you so much for taking the time to respond!
Regarding all the above would they present without physical symptoms? She has not been sick except for a bad cough around Pesach time.

amother

Linen

Tue, May 16 2023, 9:56 am

amother OP wrote:

Wow thank you so much for taking the time to respond!
Regarding all the above would they present without physical symptoms? She has not been sick except for a bad cough around Pesach time.

Bad cough can be mycoplasma.

These infections are ones that most people are exposed to at one point or another in childhood, they often look like a regular cold, or they can present as asymptomatic. With pandas and pans you’re not looking for raging active infections usually, it’s more like low level, subclinical infections that are not causing obvious sick symptoms but are causing immune reactivity.

amother

Mon, Oct 23 2023, 9:45 pm

Bumping up my old post since unfortunately it has only gotten worse Sad

The dr ran bloodwork and the only marker that came back was elevated strep in the blood. Dr prescribed 30 days of azithro and while she took it she was better. Once that was over she regressed and now the symptoms are so much worse than in May, physical hitting, complete tantrum meltdowns, bedwetting. When she has a meltdown I literally don't recognize my child..

I'm having a consult with my dr this week but I am lost on what to even request.
can you please help with any advise or resources?

amother

Sapphire

Mon, Oct 23 2023, 9:57 pm

There is a frum whatsapp group. It's invitation only
If you'd do homeopathy then call resilience naturopathy in CA all telehealth. Started my kid at age 4 and bh seen huge improvements over 2 years. I never did any abx.

amother

Linen

Mon, Oct 23 2023, 9:57 pm

amother OP wrote:

Bumping up my old post since unfortunately it has only gotten worse Sad

Just to clarify, the marker that was elevated was strep antibodies that show up in the blood, not actual strep bacteria in the blood.
If she was better on azith, you should ask for more. A few months worth at least. Also add in dye free motrin and benadryl around the clock.
Longer term you can see a pandas specialist.
If you are interested in pursuing alternative routes there are many things you can do.
There's also homeopathy.

amother

Moccasin

Mon, Oct 23 2023, 10:03 pm

Same experience with DD4. Did bloodwork. She had high levels of strep in the blood. Got antibiotics. Saw a big difference bh, but still have a long way to go. Following for more ideas of how to proceed.

amother

Mon, Oct 23 2023, 10:03 pm

amother Sapphire wrote:

Can you expound on what homeopathy treatment entailed? thnx!

amother

Mon, Oct 23 2023, 10:06 pm

amother Linen wrote:

I'm trying to understand, based on reading old posts here; does the azith get to the cause or just reduce symptoms?
Where can I find a pandas specialist? I'm in Lkwd.

Regarding alternative and homeopathy can you elaborate? thanks so much

amother

Linen

Mon, Oct 23 2023, 10:15 pm

amother OP wrote:

It's a little complicated to be honest. I wouldn't say antibiotics just reduce symptoms, it does address a cause to some degree, but most kids will not end up in remission from antibiotics alone and will relapse when they come off if deeper causes are not addressed.

I can recommend specialists but they all cost a fortune Sad

If you're interested in alternative options, holistic mother on Instagram has some fantastic info.

We use resilience naturopathic for homeopathy as well and have seem some good gains.

amother

Latte

Mon, Oct 23 2023, 10:17 pm

Homeopathy is really the only way to go. It is the only real healing solution. it's not invasive at all; you just need to really spend the time explaining the symptoms accurately. Antibiotics cause way more problems and end up reducing your child's immunity. You need to find the right homeopath who will look at your whole child; it's a process and takes time. Our child is being treated with a homeopathic remedy for an underlying strep condition and we are seeing dramatic results. We are basically using a homeopathic version of strep which has no taste and jolts the body into healing itself and eradicating the infection within itself. It's an amazing experience to see how Hashem put this wisdom in the world. I'm not exactly sure how it works, but if anyone knows, please pipe up... I'm also curious!

amother

Cerulean

Mon, Oct 23 2023, 10:24 pm

amother Sapphire wrote:

How do I get onto the what's app group? Also someone above mentioned weaning antibiotics slowly can you elaborate on that?
Thanks!

amother

DarkGray

Mon, Oct 23 2023, 10:27 pm

My daughter was treated by Dr. Shulman who pioneered the idea of weaning off antibiotics- she had a very specific weaning protocol. It is a very crucial part of the treatment plan as a previous poster mentioned. Dr. Shulman has since retired, but the NP who used to work for her now has her own practice, I believe in Monsey. Her name is Naomi Indich-Yess. She charges a lot, but once you pay for the initial visit she’ll help you through the process and is available for questions via email etc, as far as I know. I’m not sure her current email address- I used to reach her via Dr. shulmans email but she might have a new one by now.

Hatzlacha!

Last edited by amother on Tue, Oct 24 2023, 1:57 am; edited 1 time in total

amother

Phlox

Mon, Oct 23 2023, 10:32 pm

amother Cerulean wrote:

How do I get onto the what's app group? Also someone above mentioned weaning antibiotics slowly can you elaborate on that?
Thanks!

Ask Life for Lyme, https://www.lifeforlyme.org/. They run a Whatsapp group that's more for people suffering from Lyme but they'll know the PANS/PANDAS group too. Many of the kids that have PANS also have Lyme. They'll connect you with the Whattsapp group and you'll get more resources.

I do recommend skipping a lot of the antibiotics and even Functional Medicine type treatments and go to Classical Homeopathy with an expert in these kinds of kids. Doesn't not make sense, don't know why it works, but BH it's really the only thing that really's been helping heal my kid. Or maybe not skipping antibiotics (especially when active infection...definitely would use if have active STREP!!!) but for sure don't wait to try everything else and then only years later resort to homeopathy. Start it earlier than later and use other things meanwhile to help with symptoms as Homeopathy can take time.

amother

Cerulean

Mon, Oct 23 2023, 10:34 pm

bubble gum wrote:

My daughter has been on antibiotics for over a year and is Bh symptom free. The doctor I'm seeing (supposedly a pandas specialist) says there's no reason to wean slowly... I do remember hearing that weaning is a good idea. How do I do that? Less ml a day?

amother

Moccasin

Mon, Oct 23 2023, 10:45 pm

amother Cerulean wrote:

WOW! weren't you scared to keep your child on it for a year? My DC is on for almost 2 months and I'm worried about what this abx is doing to her body... but idk what else to do. Also, Dr doesn't want to give for longer than that...

amother

DarkGray

Tue, Oct 24 2023, 1:57 am

amother Cerulean wrote:

I’m so happy to hear that your daughter responded well to the antibiotics- bh that’s amazing. I would definitely not stop the meds cold turkey- I would be too concerned abt a relapse after all that time. The weaning protocol was very specific and very careful. I don’t remember exactly but it was complicated and I had to write it all down to keep track and do it properly. You can try to see if it’s available online, otherwise it might be worthwhile to reach out to Naomi Indich about it.