Update on Pixie

[pixiesmommy]

I realized when replying to a post here last night that I am not sure if I ever came back to the PANDAS board and specifically updated about Pixie.

 

We received a very positive Western Blot/Igenex Lyme test for her in Dec. We started with one LLMD that we were not entirely pleased with (to put it mildly) and are now about 2 weeks into a combo of Ammox and Azith for her. We just got the co-infections test back a few days ago, with her positive for hhv6 and mycoplasma, even though she was on abx when test was done.

 

We will be adding supplements soon: colostrum, prescription vit D, glutathione, activated charcoal

 

 

Her moods have been pretty stable since 6 weeks post-IVIG. We have had NUMEROUS bouts of strep for the entire family (we are all asymptomatic- her leg pain alerts us we are positive.) It's to the point where we cannot get a negative strep test anymore, no matter when we go to test or what treatments we try for all of us. I tested myself for Lyme and came back indeterminate, though I have been told that can mean I am positive, so I will also be starting treatment, and we will be getting the other family members tested as well.

 

The biggest problems we are facing at this point are exhaustion, very low frustration threshold, some mild sensory issues, and very mild tics that come and go. The challenge is getting her to school each day, since she needs very strict schedule and predictable situations, so that is frustrating, along with not knowing what the day will bring mood-wise. We feel like we have been out of the woods for a long while now as far as rages, but there are still bouts of her becoming non-verbal or having a tantrum that is NOT at all age-appropriate. There are tears multiple times a day due to the low frustration threshold, etc. Exhaustion is a tough one too- she sleeps for 12 hours and still that is not enough. She tires easily and due to her arthritis is unable to do much in the way of exercise at this point, and even carrying a backpack is difficult on the best of days.

 

We will continue with the diet we have maintained for a year, and see the chiro once/week for regular adjustments. We recently added cranial sacral therapy for her weekly as well. We stopped the NRT about 2 months ago, as she was no longer testing for anything other than occasional adrenal fatigue. We had a saliva test that was a flat-line, so we pursued blood testing for her adrenal gland and it is not what it should be. The endocrinologist ruled out Addison's (what we first suspected from the saliva testing) and thinks she has Secondary Adrenal Insufficiency, so we are testing for that using a provoked ACTH test next week. If that is normal, he suggests we pursue scans, etc to see if her pituitary gland could be the problem, which he claims would be unrelated to other issues and a birth defect.

 

As far as school goes, we are not pressuring her to go. I feel like if she can get there 3 days/week, that is a pretty good success for us compared to what was going on a year ago. School has been great to work with this year- we pulled her from her gifted/private school (which was a NIGHTMARE by the end,) and actually moved in order to get her into a better public school district. She is a grade-level above peers since she started school in NC and the age cut-off is different there. She's gifted, but emotionally immature due to a variety of factors (which you are all familiar with, so I won't ramble on that!) She's supposed to enter middle school next year, but I have my doubts about whether this is a good idea. I'm pretty strongly opposed, actually. I just feel like, overall, there will be less support for her due to the changing of classes, etc. even with a 504. I'm terrified that dumping that much stress on her will create another crisis for her.

 

We're toying with the option of homeschooling, of just pulling her from school for a year to rest and heal, or putting her into a local Waldorf school that seems a better fit for her/us.

 

 

I think I managed to hit the high points

[Doug]

Hello

I have pulled my dd out of school AGAIN and I am going to home school her next year we just got back from ivig # 2 with dr k and I dont want to go back EVER

So school is not the place for her to heal to many sick kids all of the time.

Tracie

[pixiesmommy]

We contacted the school tonight about the possibility of home-bound for the remainder of the year, and if they even want her back there with these active infections. I worry not only about sending her to get infected, but also possibly infecting others.

[Iowadawn]

Hello

I have pulled my dd out of school AGAIN and I am going to home school her next year we just got back from ivig # 2 with dr k and I dont want to go back EVER

So school is not the place for her to heal to many sick kids all of the time.

Tracie

 

 

What is Dr. K up to these days? Did he say anything about the number of tough cases ending up needing Lyme/TBI treatment? Just curious. We changed course after IVIG #2 when DS plateaued and spiraled a second time.

 

Dawn

[pixiesmommy]

We asked him about testing for Lyme and he was discouraging. I have not yet informed him that we did it anyway (he knew we would- we've told him all the other things we've done ) and that she was positive.

[trggirl]

Thank you for sharing your story and updating! It is so helpful and greatly appreciated!

[EmersonAilidh]

Love hearing updates about you & Pixie. Been wondering how you guys have been lately. "Low frustration threshold" is an AWESOME way to put it, by the way! I always have trouble finding the right words to tell people that I'm just perpetually PO'D. Yours sounds much nicer. So glad to hear y'all are getting somewhere with the Lyme treatment & are pursuing the adrenal issues! Leave no rock unturned. That's how the saying goes, right?