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First week with a child who likely has PANDAS

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aba - we were told by Dr. Murphy from USF, and I think you'll find it on the board here many times over, not to give omega 6's or 9's to PANS children - only the Omega 3's.

 

Our Pandas specialist said if she tolerated the 6's and 9's to go ahead and give them.

 

When things were going well, she tolerated all three fine. Then we had another illness, at the same time I had to reorder, so I just went with the 3's. I do not think the 6's and 9's negatively affect my kiddo, though I know others say it does affect theirs.

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Regarding the omega's, I never heard anything specific about doing 3's only. I do know that when we don't give her this one for a few days, we can tell a difference (i.e. she does better with it than without). Not sure if she would do better on the 3's only though.

 

I'll add that to our ever-growing list of questions to ask on our next dr. appt :).

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Met with our pediatric neuro today. We liked her a lot and thinks it is likely PANDAS.

 

She decided to keep our girl on daily Amox indefinitely and the azithromycin every other day. We are already doing immunity boosters, probiotics and ibuprofen which she told us to continue. She's ordering a huge amount of blood tests and we volunteered to go ahead with the Cunningham panel.

 

She is still way OCD. She is able to keep a lot of her comments in when in public, but when she's home it comes out like a fire hose. Ex-wife and I are shocked by the contents of her thoughts. Anything from germs, to peoples' appearances to sex. Things we have no idea where she would have heard. Remember, she's 7?!? Weird.

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The other day DD heard the word "sixty" and said, "that sounds like sexy". From a 9yo :o. Very similar.

 

At least now parents are getting the help they need much earlier, thanks to other parents and awareness. It took us 6 years and (I don't want to count how many) doctors to get to this point.

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Hello and sorry that you are in this "club". Just a thought on the thyroid numbers. I know several PANDAS/PANS families that have found out their kids (who has out of whack thyroid numbers) have Hashimotos

Encephelitis (differerent from Hash. Thyroiditis) They are being treated at Duke Autoimmine Encephalitis program. You might want to explore that.

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I was reading this post, since this is the first week that my youngest child has shown PANDAS symptoms. MY dd, almost 7 was diagnosed over 2 years ago, has received 1 high dose ivig, and is doing amazingly well, but as you all know it was a LONG 2 years. Her 4 year old brother was acting so strangely last week, and I decided to have him tested for strep, despite no symptoms, anyways, he was positive. Despite having been through this before, it is still gut wrenching for us parents, we still feel helpless. I am more educated, and I know which drs to see and which not to see, but I am still wondering, can we get a diagnosis, how long will it take, how bad will he get while we wait, what can we do in the mean time, etc?

 

One thing I wanted to mention is that my daughter had some thyroid numbers they were watching closely, and they were wondering about hashimoto's, but after IVIG, after she returned to us 100% more or less, everything returned to normal. Her thyroid, her IgA and IgM numbers, everything that was "off" returned to normal within 6-9 months after ivig. I don't know what this all means, I just think that these poor kids are just in such a bad spot, everything in their auto immune systems is just not working right, hence the PANDAS. For our DD IVIG was a game changer, she received 1 dose, within 1 year of onset. I think the timing is really critical, and early/aggressive treatment is important.

 

My heart goes out to every child & parent dealing with PANS/PANDAS but especially to those in the early days. Having been through it once, I think those early days are the hardest. Keep strong, trust your gut, and fight for what your PANDAS child needs.

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Have any of your kids had motor tics where they just lay on the ground (whether inside the home or in the backyard while playing with kids) for about 10-15 seconds and then go about doing their stuff normally? My 7 year old DD had motor tics following a bout with the flu around Christmas time. I have changed her diet and had her on essential oils to calm her down after reading several posts here. No antibiotics so far. I have heard antibiotics mess with the gut big time and it takes a while to restore the gut bacteria.

 

Her neck rotation that was prevalent 3 months ago has calmed down considerably to the point where it happens maybe once in about 3-4 hours. But this new tic seems to have emerged. It is more socially awkward (more so for a parent) because my kid does not seem to realize she is doing that in front of the neighbor kids. It happens on and off, not all the time. If she is focused on playing with her scooter or shooting hoops, she does not do that. Her cognitive abilities (math and handwriting) have been extremely in tact so far (knock on wood) but she has been doing this only since last Friday when she went to Chick-Fil-A and played in the kids' play place.

 

When PANs/PANDAs kids contract an infection or some other thing they are exposed to, does it manifest as a different tic since their immune response is not working right? I asked her if she knows she is doing it and she says she was not aware. I just hope I did not amplify any anxiety with my little one.

 

Any and all advice would be appreciated.

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Finally got all the bloodwork back and Doc is 100% sure that it's PANDAS. Bittersweet because it is AWFUL that my pefect little child has to put up with this bullshit when it's already hard enough growing up in this world, BUT nice to know what it is so we can go about eradicating it from her life with the help of her doctor.

 

She's shown slight improvement just over the last few weeks. Not sure if she's just coping better with being under attack by her thoughts, or if the antibodies are leaving and relinquishing their grip on her brain. I'll post some blood numbers for those who are interested.

Her meds now are:
Amox

Azith

Acyclovir

Ibuprofen

Marine Algae

Probiotics

Essential Oils

 

She's seven and takes more effing pills than an 80 year old. PANDAS=BULLSHIT.

 

Still, have a nice day and I sincerely wish all of you strength and progress with your struggles.

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