Posted By Posting
Jan 07, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Engi
How's Meggy doing lately?
Jan 08, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Long/bit of frustrated rant
We have had some pretty terrible nights lately, but as always, she is a trooper and just keeps on going like the energizer bunny. The nights of sitting up with her have gotten so frequent and exhausting that we took our very heavy recliner that is also a rocker and dragged it up the steps for the long nights.

I weighed her today to find that she is under 19 pounds again. Good news is I finally after a very exhausting 20 months convinced someone to write a lab for Lyme disease panel. Sometimes, I wish I did not have to rely on doctors for it. The pedi. wrote the script very grudingly and said "We can run a $million worth of labs and no matter what we do, it will still be mito."

Mito is not proven yet, and instead of subjecting her immediately to the biospy, I wanted to rule congenital lyme disease and lack of digestive enzymes out. I told the pedi. How can we subject her to 1 and 1/2" cut on her thigh and 1" long piece of muscle removed before doing something as simple as a blood test. She only agreed to run for Lipase and one other enzyme as well.

She was telling me how wrong I am and that I am asking for needless labs. I told her then prove me wrong. If I am wrong I will say I am wrong, but I want prooof.

I tried to address the sleep issues with Pedi. who said she is just spoiled, or doesn't need sleep, or sleeping to much in the day, or has days and nights mixed up. Uggh, I wish she would come spend a night with us.

Jan 08, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Wow, talk about insensitive. I think some of these Peds are tired of dealing with us and just don't know what to say anymore..... Or they shouldn't be practising anymore if they can't step back and be a bit empathetic...

I hope you get some answer soon Engi. Keep posting updates if your not too exhausted. I think about you guys a lot.

We bought that ikea bed insert also because we are just tired of walking/rocking her for hours on end. It has really helped. It's not a mracle worker, but sleeping upright is far easier this way, and most of all I can sleep too.

have you done the blood work yet?

Check with your
doctor first!