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Zach had a pulmo apt yesterday. The dr. said that they're assuming that zach is either aspirating and that is causing pneumonia or he has ciliary immotility or both.

He will be getting a biopsy of the nose to test the ciliary when he goes in for his proceedure in may. As far as how well he'll do health wise we dont know the dr.s sounded optomistic though. The pediatrician called today and said that zachs platelet count is low. I also have itp and have a low platelet count. His is 103, mine hangs around 83-100k. The dr. is holding off to see if this is due to his sinus infection. If it is still low then we need to send him to a pediatric hematologist.

Another dr. in albany ( an hour away ) probably.

Zach already sees a pulmonologist, cardiologist, opthomologist, inborn errors of metabolism specialist. The list just keeps growin .

So i dont know whats going on w/ him yet. The pediatrician says zach definately needs the flu shot again. Says that if zach gets the flu, he'll most likely wind up in the hospital .

mom to zach 4 ga2 alexis 6 __________________________________________________

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Sorry to hear the aspiration issues seem to not be getting better. I

understand your frustration at adding new doctors. We started with only the

neurologist and the geneticist and then over time added the GI, the

physiatrist, the urologist, the immunologist, rheumotologist, eye docs, etc.

The list is sometimes never ending and because we see so many our trips to

Mayo are packed full and the stay is always several days now. Both girls

see most of the same docs to complicate the matter. I hope you will not

need to keep adding to your list. It gets rather hairy after a while.

Please keep us updated on Zach and his health. Don't you just hate to deal

with swallowing issues?!

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

update on zach

>

>

> Zach had a pulmo apt yesterday. The dr. said that they're assuming that

> zach is either aspirating and that is causing pneumonia or he has ciliary

> immotility or both.

>

> He will be getting a biopsy of the nose to test the ciliary when he goes

> in for his proceedure in may. As far as how well he'll do health wise we

> dont know the dr.s sounded optomistic though. The pediatrician called

> today and said that zachs platelet count is low. I also have itp and have

> a low platelet count. His is 103, mine hangs around 83-100k. The dr. is

> holding off to see if this is due to his sinus infection. If it is still

> low then we need to send him to a pediatric hematologist.

>

> Another dr. in albany ( an hour away ) probably.

>

> Zach already sees a pulmonologist, cardiologist, opthomologist, inborn

> errors of metabolism specialist. The list just keeps growin .

>

> So i dont know whats going on w/ him yet. The pediatrician says zach

> definately needs the flu shot again. Says that if zach gets the flu, he'll

> most likely wind up in the hospital .

>

> mom to zach 4 ga2 alexis 6

>

>

> __________________________________________________

>

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,

Man,,,a biopsy of the nose,,,now that sounds painful !! I'm so sorry to hear about that. When does he have that ? I know what you mean about all the specialists ! Logan sees a cardiologist,rheumatologist,neurologist,genetics,opthomologist,endocrynologist,etc,etc. Seems like the list just grows everyday . It would be so nice,,if somehow,,we could find one Dr,,that specialized in all these things,huh ?

I hope you find out some good news about his platelets soon :)Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

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