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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Hello

 

DD12 hasn't had any PANDAS symptoms for over a year but has developed insomnia with some nasty but short lived episodes, Three weeks ago insomnia went down hill and hasn't got better. Last week she was feeling light headed at all times, shaky, some nausea and fainting or near fainting on rising in the morning.

 

Ped. Did the lying down, sitting, standing test. Her pulse went up by 42 beats form lying down to standing and BP went from 100/60 to 85/60.

 

Ped. Says she's got POTS probably from adrenal fatigue and has her on hydrocortisol 10mg in am 2.5mg in afternoon ( we dropped form 5mg as it made her super shaky).

 

Day 6 today and no improvemtn in sleep or light headedness.

 

Do anyone kids have POTS in addition to PANS (there's a crappy joke in there somewhere) and has insomnia been part of the POTS specifically?

 

I'm seeing insomnia come up as a symptom of POTS on various sites but no explanation as to why it would be a symptom. And can't decide if she had preexisting low level POTS (she also gets tummy issues, headaches etch) that led to insomnia or if insomnia brought the POTS on....

 

Thanks :)

 

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It's not unusual for someone with Lyme and co-infections to develop POTS. These infections can be part of the picture even if her PANS was initially triggered by strep. Have you had her evaluated by an LLMD?

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And adrenal fatigue is Lyme related too. Usually advanced stage Lyme. Adrenal Fatigue patients have a hard time falling asleep, and a hard time getting up in the morning. (Vitamin C is supposed to support adrenals).

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My DS15 was 11 when PANDAS crashed in on him, was 12.5 when POTS joined the party. His was diagnosed when he was at MAYO and reconfirmed by local Neuro here in WA. It was really bad for him for about 2 years, but sloooowly he's seen lessoning of the symptoms, but blood pressure still really off between lying and standing. It's something that is associated w/ rapid growth (he's 6'5" at 15 yrs so he's always been on exponential growth pattern) and long term infections (Strep and Lyme for him). Can take years to lesson symptoms unfortunately.

 

Lots of (awful) sports drinks, excercise, and additional salt in food or raise BP, and elevate head for sleeping w/ a wedge pillow. It can be very debilitating.

 

Hang in there....

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Thanks for all the information and ideas.

 

The last couple of days have seen an improvement in sleep. # out of last 4 nights she fell asleep within 1/2 hour of going to bed. Best by a loooong way in 4 weeks. She also has had 2 of those nights with 7-8 hours of sleep. So it would appear that the hydrocortisone in day and cortisol manager med at night are helping her turn the corner.

 

She still is very faint/light headed with fairly bad continual stomach cramp like pain.

 

I am hoping that with some rest and adrenal support she may overcome the POTS sooner rather than later. We do seem to be a POTS family. I suspect I had it around age 12 for a couple of years but not badly was just a 'fainter' also after dd's 1st flare, after she recovered I hit the wall and now realised it was probably POTS due to adrenal wipeout. I had the fainting upon rising, palpitations, short of breath, fatigue. It lasted about 3 weeks for me, so I'm keeping fingers crossed for dd.

 

Neither of my PANDAS kids have ever looked overly Lyme-like and have always been a bit nervous of opening that can of worms and am still b ut will keep it on back burner. Our ped is Lyme savvy so I will raise it with her.

 

Was insomnia ever a big part of your kids' symptoms wrt POTS?

 

I'm still trying to work out if the adrenal fatigue issue caused the sleep problem or was as a result of it....

 

Thanks for any more info :)

 

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With "stomach cramp like pain" perhaps run a comprehensive stool to see if she has picked something up. They can be very helpful in other ways as well........ like, how much gut absorption, good bacteria, yeast issue, etc.

 

DHEA and Pregnenolone are both hormones that act as natural steroids and help those with adrenal fatigue. Again, her age makes me think there is an imbalance in her levels. I would try and push your Dr. to test her hormone levels.... especially, her growth hormone levels (DHEA).

 

I agree with other that POTs and adrenal fatigue are related to Lyme et al. Dizziness, fainting specifically Babesia

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