Overnight Behavior Regression Mycoplasma??

amother

Mon, Feb 24 2020, 11:58 pm

Hi.
My easygoing chilled happy child has turned into a angry anxious little girl who blows up at the slightest thing!! She has trouble falling asleep when she usually fell asleep the second her head hit the sack. She now hates all the food she previously loved. She asks the most absurd questions. She shouts and tantrums and appears to have gone crazy at times. I took her to my pediatrician and after begging & pleading, because we presented mostly behavioral symptoms, he consented to having her blood drawn. The diagnoses was a Mycoplasma infection. After 3 rounds of Zithromax the behaviors have not calmed down and at times intensified:( I’m so sad for my child. She is suffering so much!! Can anyone shed some light on this?? I’m at a loss of how to go further. Why is she having these severe behaviors??

amother

Tue, Feb 25 2020, 9:15 am

The reason my pediatrician originally refused to do bloodwork was because I’m another crazy mom imagining her child has panda, which he doesn’t buy into. He claims the strep markers are perfect. Only the Mycoplasma markets are very elevated. Where do I go from here? I’m lost. Can Mycoplasma do this too??

amother

Peach

Tue, Feb 25 2020, 9:18 am

amother [ OP ] wrote:

Yes absolutely, mycoplasma is a very well known trigger for pans, which is basically pandas but caused by infections other than strep. It's interesting though that she is not responding to the antibiotics.

The hypothesis for why this happens is that when the immune system is trying to fight the infection with antibodies, the antibodies mistakenly attack different parts of the brain, causing all kind of neurological dysfunction, leading to behavioral, psychological and neurological symptoms.

You need a pandas-literate dr. Your pediatrician does not sound knowledgeable or on board.

Also, get a copy of the bloodwork yourself. Often, pediatricians will say results are normal when they are really not. We've had this several times, especially with strep titers.

amother

Tue, Feb 25 2020, 10:00 am

amother [ Peach ] wrote:

Help!! Where do I go from here??

amother

Tue, Feb 25 2020, 10:24 am

I’m in Brooklyn. I’ve been following doctors orders up until now which was 3 rounds of Zithromax. My son was extremely weak on the antibiotics and now 2 weeks after the 3rd dose the behaviors came back with a vengeance Crying

. This is completely new to me I never heard of the iboprophen trial nor anything related to pans/pandas. Is there a doctor that can guide me?

amother

Salmon

Tue, Feb 25 2020, 10:26 am

Dr Susan Shulman is the most well known Dr in Brooklyn who treats pandas. You will have to pay out of pocket but it's extremely worthwhile. IME the sooner you start treatment the faster the response. Waiting longer makes the recovery slower. Refuah shelaima!

turca

Tue, Feb 25 2020, 10:29 am

OP I once had a mycoplasma infection and I had to be on doxycycline for about 21 days ( together with Zithromax). It did the job.
I don’t know who would help your child, but my OB took care of it.
Refuah Sheleima

amother

Tue, Feb 25 2020, 10:34 am

Thank you for all your responses. I’m super overwhelmed right now. Any other doctors besides Dr Shulman?? Is there ANYONE who does accept insurance as I don’t have any means to pay out of pocket:(

amother

Pink

Tue, Feb 25 2020, 10:43 am

You can try PA Rosenfeld in Kensington. He is not a PANS specialist but I do know that he's familiar enough to get the ball rolling. Get a copy of all the bloodwork done by your pediatrician and bring it to him.

amother

Peach

Tue, Feb 25 2020, 10:53 am

OP did your child's symptoms improve while on antibiotics? Did they come back once he came off? If yes, see if your dr will prescribe antibiotics for longer.

Ibuprophen trial means putting your kid on ibuprophen around the clock. Since ibu takes down inflammation, and pans symptoms are caused by inflammation to the brain, very often ibu will help mitigate pans symtoms. It's a trial only when you don't know if the symptoms you're seeing are due to brain inflammation, but if you've tried antibiotics and they helped with the psych symptoms, you pretty much have your answer already. You can still use ibuprophen though, until you get more abx. Many people use ibu and abx in conjunction long term.

As for drs who take insurance, you can try dr wendy vargas in columbia neuro. I've heard that she stopped seeing pans/pandas patients, but you can try your luck.

amother

Tue, Feb 25 2020, 11:13 am

Regarding the iboprophen, I’m really hesitant to do something in my own.. would love to have a doctor guiding me..
SHe was so weak on the abx can’t say much better but definitely too weak to tantrum as much.

amother

Wed, Feb 26 2020, 9:11 am

Ok. So my childs bloodwork came back. Her mycoplasma number are good. So why is she still presenting these behaviors with such intensity? Is it because her sister now has strep?? Do children with pans/pandas go crazy when another child is sick? I’m so confused!!

amother

Sienna

Wed, Feb 26 2020, 10:50 am

Firstly, Pans/Pandas is caused by inflammation in the brain following infection. Infection can be gone but inflammation stays. Once immune system already went awry (infection causing neurological symptoms), it is likely to mount a response when anyone else is sick as well and cause more neurological symptoms.
Please try a motrin trial...it is safe. My child with pandas has been on motrin straight for 2 years so far (and per neurologist order)...
Secondly, if your child was anywhere near a place with ticks this summer, please test her for lyme. Mycoplasma sometimes goes hand in hand with Lyme disease. The weakness you are describing after and with antibiotics sounds consistent with something called Herxeimer Reaction (Google it). It is basically when u start antibiotics for lyme, the bacteria die off and cause more severe symptoms temporarily.
Third, there are other neurologists at Columbia besides Dr. Vargas and they all take insurance.
Good luck...

amother

Peach

Wed, Feb 26 2020, 7:56 pm

amother [ OP ] wrote:

Very common for kids with pandas to flare off other people's illnesses, esp strep. Every time the immune system encounters a pathogen, it mounts an immune response. With pandas there is a misdirected immune response to the brain instead of to the pathogen.

I would be careful with columbia neurology, not all their drs are pandas friendly and may make you doubt yourself/will just send you down the neuropsych rabbithole