News from emkana - I've had an absolutely awful time in Germany

[emkana]

And I had so been looking forward to going home and get a rest...

in brief: Went home, saw doctor on first day there to get ds's ongoing cough/cold checked out. Doctor said to come back after 24 hours.
Next day doctor sent me to the hospital with ds, where he was kept for nine days - they called it obstructive bronchitis, but my understanding is that it was what is called bronchiolitis in English. Ds needed oxygen for a bit and inhalations. We're back home now, but ds is still far from recovered and on all sorts of medication.
We were told to see a lung specialist in the UK to get ds checked out.
After I came out of hospital with ds I had one day left in Germany, which I spent seeing a professor who is a specialist for skeletal dysplaisas. He said he believes that ds has a mild form of Jeune's , but that a prognosis was not possible.

I just feel exhausted atm.

not really alot of help at all as my ds has a totally different medical condition to yours but in the early days they did seem to do scare tactics on us to prepare us for the worst case scenario with ds and often results that were even the tiniest bit doubtful they would tell us the worst outcome for, within the first 8 weeks of his life we were told that he had most likely Hirshsprungs (he didnt, a malrotated bowel (he didnt) intersuseption of the bowel (he didnt) that he would require a colostomy bag (he doesnt) that there maybe a neurological disfunction (not evident he is on track developmentally) etc. While I don't want ot minimise what you are going through at all I think it comes down to the fact that sometimes they just dont know all the answeers and they try to prepare us for what might be. BTW ds also had broncialitis as a new born which they thought could be related to his other issues but he recovered and has since had almost no respritory difficulties since unless you count the odd cold.

Sorry to hear all this Emkana. It must be so frustrating. Hope the US can give a def diagnosis for you.

It must be incredibly frustrating not knowing emkana. Best wishes for a clearer (and a good) prognosis for little Sebastian soon.

Emkana, did you ever get back to, er, Dr something-beginning-with-C who you saw whilst pregnant?

Bliemy Em....what a long rollercoaster ride this is.

Sorry you still haven't got any answers

hi Emkana,

been thinking of you and wondering how you were getting on. hope things get better and you at least get a clear diagnosis.

cx