Tuesday, September 19, 2006

Here is a list of Noah's symptoms so that if anyone wants to forward them on to a specialist, it is available, or if you refer someone to his blog they can easily access this list. If someone is interested in Noah's case from a medical perspective, you are more than welcome to contact me through the blog with your contact information. Thanks!


*2 weeks: horizontal nystagmus, not constant, sometimes when focusing to the side
*4 weeks: presents with a rash, much like a heat rash all over body
*5 weeks: dark green diarrhea with mucus (this he had for 2 weeks prior to admittance to hospital 8/2, then continued a degree of diarrhea until 8/23 when he was taken completely off breast milk, given flagyl (an antibiotic for c-diff for which he tested negative) and cefuroxime for pneumonia, and put on the respirator for left lung collapse
*Increased overall hypotonia, he did have the archer’s response/reflex, had general reflexes, but those have decreased
*MRI 8/3 shows peripheral demylination in white matter
*8/3 starts transpyloric feeds; combo breast milk with Nutramigen
*8/4 stool sent to CDC to test for botulism
*8/7 PICU admit; begins c-pap O2; feeds 30ml/hr Nutramigen alternating 20/10ml ratio formula to breast milk due to decreased supply; diarrhea still present
*Lab tests: amino acids normal; long chain fatty acids normal, carbs all normal
*8/20-8/23: nurses increased breast milk one 60ml/2hr syringe formula to 60ml/2h syringe of breast milk
*Between 8/7 and 8/22 CO2 levels continue to creep upward as well as Ph acidity
*8/22: Noah’s left lung collapses sometime that evening/overnight
*8/23: Noah placed in an iron lung along with c-pap: does not reinflate
*8/24: Noah’s stool samples return from CDC…lab mice ALL died from Noah’s stool, even ones given anti-botulism antidote; Noah taken off mother’s breast milk at mother’s request; diarrhea ceases with heavy antibiotics
*8/25: Noah put on flagyl and cefuroxime antibiotics for pneumonia and possible c-diff (sp?)…CDC still doesn’t know WHAT killed the lab mice
*8/25-8/26: Second stool sent to CDC for testing; also urine sample taken for heavy metal toxins (came back negative)
*8/28: Breast milk sample sent to Mayo and CDC for testing: heavy metals, toxins, etc. (came back negative, though were testing ingredients from natural supplements for which they don’t have normal levels which to compare…)
*CDC confirms the bacteria that killed all the mice was not the botulin strain, BUT THEY STILL DON’T KNOW WHAT IT WAS/IS!!!!!!!!!!!!!!!!!!
*He’s had EEG’s (these were normal), nerve conduction, muscle evoked response (these two showed delayed responses), healthy spinal tap, healthy x-rays

*Removed from Flagyl because docs said it wasn't C-Diff, so not necessary.
*Tested for SMA, negative…
*9/13: evoked auditory response test normal

*9/17: EKG performed due to lowered heart rate-normal

*9/19: barium pre-op procedure to check stomach anatomy - normal

*9/21: TENTATIVE TRACHEOSTOMY/G-TUBE PLACEMENT/MUSCLE BIOPSY/SKIN BIOPSY surgery scheduled (time not confirmed from docs yet)




The main prognosis were: metachromatic leukodystrophy, Pelizaeus Merzbacher Disease and Like-Syndrome, they even sequenced his genes specific to these in Delaware, but they came back normal…They had actually banked most of their money on the PMD and Like…


I’ve probably missed a lot…basically the docs don’t know why Noah is hypotonic, why he has nystagmus, and why he’s in respiratory failure. I’m wondering if there’s something SIMPLE that they are missing…
His main docs are a geneticist (David Manchester), a metabolic geneticist (Johan Von Hoven), and a neurologist (Dr. Moe)

5 comments:

  1. Ade and Jason,
    Thinking about ya constantly.
    Love and miss ya.
    Tonja

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  2. Will compile another email to my other contacts and see what they say. I know some doctors want to see the actual charts, but as I send these messages I am praying that one or more of the recipients will be compelled to pursue the case on their own accord. I am not making promises, but I'll continue to do what I can.

    Crusading from T-Town,
    Lynette

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  3. Hi Adrienne and Jason,
    My husband and I received your blog from Kim, a friend of Angie's. My husband is a physician and wondered about Gullian-Barre syndrome. This is not his field and feels certain your docs would have checked it out. We will be lifting you, Noah, Em, and family up regularly. Brenda

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  4. Anonymous1:19 AM

    Thinking about you at midnight. Hope Noah...and you...are sleeping well!
    Chris K.

    ReplyDelete
  5. Continuing to pray for you all and for answers!!! Will be praying for tomorrow's surgery as well!

    Love the Franzens

    ReplyDelete