Your PANDAS journey

amother

Tuberose

Tue, Jun 08 2021, 9:52 am

I don't remember all the details. It was a few years ago.

My sweet, calm son was around seven years old, started needing to jump out of his skin, kick his legs and shake his arms at random constant times

I don't remember if they did blood test...
I don't know if dr was knowledgeable, I think she was just willing to try and had tried it before

Dr put him on antibiotics for abt a month, two, and bh it went away.

Don't remember any more details

amother

cornflower

Tue, Jun 08 2021, 10:37 am

Our onset was at age 4.5 . My child went from being calm, sweet, well adjusted, friendly, curious, precocious to being volatile, mean, aggressive, raging, phobic, restrictive eating, hyperactive, regressive, stuttering, anxious, rigid. She also complained a lot of foot pain, couldn’t fall asleep at night, developed a facial grimace tic. We had elevated strep titers, we also found elevated coxsackie and hhv6, high IgE, positive immune complexes, mthfr. Our pediatrician was accommodating but I always had to be informed and lead the way in terms of testing and treatment. Throughout the years we have done months of different antibiotics, herbal protocols, mountains of supplements, diet changes. We saw the most gains with augmentin, Motrin and Claritin. Currently we are pursuing classical homeopathy and also myofunctional therapy. It’s now 5 years later and we are still not in remission. Symptoms come and go and keep switching, we have better stretches and worse stretches. I do feel like treating has brought us to a better place, we never are as bad as things were at onset, but we still have a way to go and it’s so hard when we slide back. The best thing I ever did on this journey was join pandas groups on Facebook. Aside from the support and validation, you will learn things about treating this beast from other parents in the trenches that no pediatrician or even thousand dollars a visit pandas specialists will ever tell you.

amother

Tue, Jun 08 2021, 11:19 am

My son was exposed to strep a couple months ago (my other son had strep), and has had OCD symptoms since then. His strep titers came back elevated and they are prescribing a round of antibiotics. But many PANDAS kids seem to require longer term antibiotics. Would I request that? Would I look for a PANDAS specialist who would know what to prescribe?

I feel like people on this site always talk about PANDAS in a hush-hush kind of way, without clear concise information about how to navigate the situation.

Is one round of antibiotics likely to help? What do I do if my pediatrician doesn't want to prescribe longer term antibiotics?

Anyone else feel like the PANDAS info on this site is very unclear? (Not on this thread specifically, I mean on this site in general)

amother

cornflower

Tue, Jun 08 2021, 11:29 am

amother [ OP ] wrote:

Yes, most kids need a lot more than just a round of antibiotics. I would say minimum 30 days, preferably even longer. If your pedi won’t prescribe longer, I would beg for it. Or find a new pediatrician. A pandas specialist can help you as well, if you post where you live we can help you find one, but they are often expensive and have long waits and it’s much better and easier to have a pediatrician who will work with you. Sorry you’re finding the information vague, I think possibly it’s just because every pandas journey is so different, there are so many causes, so many ways to go about treatment, and different kids respond to different things, so it’s just not very clear cut in general. If your pediatrician is open to learning more, there is a website and network specifically for providers with all the diagnostic guidelines, evidence based treatment guidelines, latest research, and so on. https://www.pandasppn.org/

You know your kid best. Don’t stop advocating.

amother

Daffodil

Tue, Jun 08 2021, 11:34 am

amother [ OP ] wrote:

Yes treatment for pandas on this site seems to be a secret. You will get a lot of we did a lot of different treatment, antibiotics alone isn’t the answer. But no one will tell you what the answer for them WAS.

amother

Celeste

Tue, Jun 08 2021, 12:00 pm

There is NO one answer.
Pandas has 3 pronged treatment. And exists on a spectrum from not too bad to terrible.
1. Find the trigger thru bloodwork (lyme, flu, covid, strep, mycoplasma etc). Treat that with antibiotics for at least a month and see if any symptoms abate. If it doesn't help at all, you might need a different antibiotics or a combination of two. And long term antibiotics serve both as a preventative for further infections and as an anti inflammatory.
2. Treat the brain inflammation that the trigger caused (that are causing ur neuropsych symptoms). Motrin, naproxen turmeric etc. Given consistent 3 times a day in the beginning for a week at least and longer if u feel this is helping. This helps a lot of people a ton and is often the missing piece that people don't think as as important as the antibiotics. It's a necessary component.
3. Treat the faulty autoimmune response with either steroids, ivig, collect, rituxan.

PANDAS is an autoimmune disease. There is no cure per say. There is remission from flares caused by various triggers.
If u haven't achieved remission from a bad flare up of symptoms with antibiotics and motrin alone, you have to address the autoimmune part (with a pandas specialist or neurologist) and you may also be missing a trigger.

amother

cornflower

Tue, Jun 08 2021, 12:03 pm

amother [ Daffodil ] wrote:

Its not a secret. It’s just that most people don’t have Answers. Just options. Different things they’ve tried with varying levels of success. I can be as detailed or as vague as you want, but copying what we tried won’t necessarily give you the same results.
In addition to antibiotics, Motrin and Claritin, the interventions we’ve found most successful were gluten and dairy free diet, working on getting cellular magnesium levels up with bio available oral magnesium, magnesium footsoaks and magnesium oil, opening methylation and sulfation pathways, high dose thiamine, NAC, Gaba and l theanine.

amother

Foxglove

Tue, Jun 08 2021, 1:34 pm

amother [ cornflower ] wrote:

Who guided you? Sounds like you used an alternative practitioner.

amother

Tue, Jun 08 2021, 1:46 pm

amother [ Celeste ] wrote:

Thank you so much. This is very clear and concise information. I appreciate it.

Where did you find this information for yourself? Which doctor prescribed the 30 days of antibiotics? Did you have to ask for it or was it the doctors suggestion? I was given a prescription for one cycle of Zithromax. Should I ask for more?

amother

Darkblue

Tue, Jun 08 2021, 1:51 pm

1st off PANDAs is a money pit. But there is help out there. When the traditional antibiotics and motrin don't work, its time to dig a little deeper. There are 2 big drs in nyc that specialize in PANDAs/PANs. Its not cheap but they can give you different treatments options (based on blood work) like IVIG and plasma pheresis combined with different antibiotics. Both have a high rate of success.

amother

cornflower

Tue, Jun 08 2021, 2:02 pm

amother [ OP ] wrote:

I echo this question.

Are you the homeopathic type in general? I don't typically use homeopathy. I would tend towards the antibiotics, ibuprofen, medical route.

We’ve seen a mainstream pandas specialist, an integrative functional pandas specialist, and now we are seeing a classical homeopath. But outside of antibiotics that we needed an MD to prescribe, we saw the most gains by self treating. Like I said, joining pandas groups has guided and taught me more than any specialist ever can. I’m not saying this to be facetious or hyperbolic, I’m saying it in the most plain and literal sense. Drs do not know as much as the collective information of the parents on those boards. That being said, self treating is not for everybody, and there are some excellent drs with excellent success rates, both in the mainstream world and functional/alternative. FWIW, just because not everyone knows this, functional medicine is not the same as alternative. They very often use many prescription medication and other allopathic treatments. They differ from mainstream western med in that they really dig deep to uncover layers of causes and aim to treat root causes. As opposed to just symptoms or the most superficial layer of cause. Homeopathy works entirely differently from any of these modalities, it’s just a whole different ballgame, especially classical. And it’s way too early for me to tell if it’s helping us at all. Anyways, going down the mainstream route is a legitimate choice and if you post your location I can try to make some recommendations.

amother

Celeste

Tue, Jun 08 2021, 2:06 pm

amother [ OP ] wrote:

I researched a ton and have been in the pandas trenches for a few years already. For sure ask your pediatrician for longer than a five day zithromycin cycle. You need at least a month to see if it helps. There are also other antibiotics that have positive results like cefdinir and augmenting. If your pediatrician isnt open to it, please tell us where u live and we can help you find a specialist.
If you would like to join a pandas WhatsApp chat for frum women let me know.
Also, you mentioned that ur child displayed ocd symptoms when his sibling had strep. Kids with pandas often have strep themselves without typical symptoms. Neuropsychological symptoms would be a sign of having strep or other illness or virus themselves.

amother

Cinnamon

Tue, Jun 08 2021, 2:10 pm

amother [ OP ] wrote:

Not because it’s a secret, but because it’s so complicated and treatment is so individual. What works for one person can cause a flare for another.

Here’s a list of everything we’ve tried in the past five years. Some for prevention, some for healing, some for treating the symptoms.

Magnesium
Turmeric
Every antibiotic under the sun
Neproxen
Motrin
Probiotic pills
Fermented foods
Vitamin D
Vitamin C
Zinc
Elderberry
BlisK12
L-tyrosine
Epsom salt baths
Omega 3
Melatonin
Cbd
And a bunch of different therapies (I can list tbose too if you’re interested)

amother

Daffodil

Tue, Jun 08 2021, 2:15 pm

amother [ Darkblue ] wrote:

Who are these specialist?