Back from Children's Memorial...test results.

[rowingmom]

I don't want to get my hopes up, but as of early last night, I felt the energy change in ds. (at this point I think it is a maternal thing). First, he made it through Karate without Ticking. Second, he sat calm last night with no great motoric movements. Third, this morning he woke up for the first time without going into verbal bird calls and antagonizing his brother. Fourth, when he realized that his skateboard was broken and unable to be ridden to school (you have no idea what kind of tantrum that could have produced), he handled it.....Later, his principal called at the end of the day and said, I quote, "DS had the best day that we have seen in weeks! He only needed 2 redirections all day. I personally stayed in class for 1 hour, and he did great". When I got home from work, my husband reported a great night...

 

I must say, I have not seen him make it through an entire day like this in weeks...at the risk of sounding dramatic....Please Dear God....let it be....p.s Thanks for all the cyber hugs...I needed them.

 

I know exactly what you mean by this - a mom thing. When DD first developed a high fever and became really quiet 2 days after her 15 month MMR, I just had a horrible, horrible sinking feeling. I just knew. It was the beginning of everything.

 

3/4 of the way through her lyme/bart treatment, when malarone was added there was a sudden calming. The continuous life-long movement/agitation stopped. We were driving to dance class, and there she was, sitting beside me, hands in her lap, looking out the window at the scenery going by. No finger chewing, no ticcing, no squirming, there was peace. This time I had a wonderful, wonderful feeling. This was the beginning of the end of her problems.

 

She went on to redevelop ticcing etc with new treatment protocols, but the calmness has mostly remained. It was like she matured in that instant.

 

I totally get the Pink Elephant thing too. Nothing is as it should be anymore, but has to be accepted.

Edited October 16, 2013 by rowingmom

[nicklemama]

I found my son could not maintain on Dr. Ks prophylactic dose. He does much better on treatment dose and that's what he's been on since IVIG last Nov. I have a local doc rxing it. We did the prophy dose after the first IVIG in. May 2011. He had all kinds of ups and downs, getting better when put on treatment dose after flares only to go up and down again on prophy and finally relapsed after pneumonia and requiring a second IVIG.

[3bmom]

So sorry what you went thru. Hits all my triggers. We went to the same hospital, "Best in the West" that gave him a PANDAS diagnose when age 6. Brought him back at age 11 with a terrible flare with all records in hand. Threw him in psyche ward with no treatment, no meds, no blood work. Just parenting lessons. Stress gave him a grand mal seizure the night we came home. i was too afraid to call an ambulance. How sad is that. They no longer believe or are allowed to believe.

 

I realize it has to be bigger than the Drs. They don't do blood work because it might reveal something. Otherwise they would prove me wrong. Our case 3 infections and life threatening allergies all proven with blood work, evidence based medicine from a compassionate Dr. Check out where their biggest research funding is coming from. Children's in Boston took aPANDAS child away from her parents and she is now a ward of the state.

 

I HIGHLY suggest a GMO FREE Diet. GMO's chelate minerals from the body especially magnesium, creating methylation issues, disruption of immune system, gut issues effecting serotonin and tryptophan for sleep not to mention allergies.

 

I would also check into trying an antiviral.

 

Hang in there..as my oldest son said when I was beginning to shatter, "it is always darkest before the dawn" and he was right! We are now doing well and reweaving the fabric of our family back together. Take a walk, visualize strength, support and healing. Hugs, 3bmom