Hi all

[Guest guest]

Its been awhile since I wrote last, but I have kept up with the emails as

best I can. I feel a little guilty not responding to each email as I would

have liked to, and hope things settle down a little in the next few weeks so

I can actively participate again.

I hope everyone managed to celebrate Christmas with their loved ones,

whether it was in your own homes, your extended families' or in hospital, as

I know quite a few did. Lets look for a wonderful New Year and one filled

with love and warmth.

A few months ago I had a very hard experience with a specialist who was

meant to help my son . We had hoped we had found the right team to

join the dots of all of s medical problems to pull it into a more

condensed diagnosis, maybe even with a name and certainly with better

management than he currently had. Fewer drs, fewer meds..........

The bottom fell out and it was a horribley emotional time for me , my

husband also. We decided to pull back on all the specialists as a result,

having stumbled across a great MD just a few weeks previous allowed us to do

that, and I have to say not questing for the brilliant immuno/wonder dr has

been somewhat a relief in a way. I dont think we will be able to find that

dr here and searching for him/her was an emotional rolllercoaster ride.

Now dont get me wrong, is still under the GI, neuro, renal surgeon,

etc, and nothing really has changed but that I managed to swing a few

review consults by phone which lessened the 'dr exposure' , and we

completely pulled back from the immuno specialist who was not prepared to be

of much help for some insane reason. It seems a case of not wanting to

step on the old immunos toes, its a close knit medical community we have in

my part of the world, and the immunos here are all well known to eachother.

I've relised I'm rambling, so I'll tighten this up a bit. was

scoped a few weeks ago by his GI after refluxing blood. From what I've been

told it showed inflamed esophagus, indicated gastroparesis, and the biopsies

turned up gastritis but as I have not yet met with the GI other than to talk

by phone for the initial results, I have no idea if this is a diagnosis of

confirmed EG although I doubt it as I dont believe the biopsies were done as

they needed to have been. She has placed on a semi elemental

supplement.

We have also been surprised by the culture results of what we thought t was

ringworm on s side, it has come back as non fungal, and something

called Malassezia furfur. I've been told it is not an uncommmon thing and

need to treat with Pevaryl from top to toe for 3 days, then Selsun 2 times a

week for 3 months. Anyone dealt with this before or know anything about it?

I've more to ask, but this is turning into a novel. Oh, any information on

delayed gastric emptying would be appreciated!

My best wishes to everyone,

, mum to (6) complement def, selective IgA def, hypothyroidism,

slow GI motility, chronic constipation,

and (3) dysfunctional antibody def, low complement, selective IgA def,

chronic paroxysmal hemicrania, bilateral hydonephrosis of kidneys, delayed

gastric emptying, hiatus hernia, low GI motility, anorexia, chronic mouth

ulcers, hypothyroidism, chronic constiaption/anal fissures, early stages

bronchiecstasis, joint pain.