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.

{hugs}

oh emkana what a shite time

emkana, i was only asking where you were the otehr day.

Sorry to hear this Emkana. Presumably your GP here will refer you or are you still under the care of paediatrician?

I am so sorry you are having such an awful time, emkana.

I'm seeing the GP tomorrow. The paediatrician hasn't really bothered with us much so far, so I will ask the GP's advice.

I would have thought that your DS would have been given a folow-up appointment by the paediatrician to review his progress.

We had one appointment, but the consultant didn't show up at that one, we just saw a different doctor who wasn't familiar with the case. Next appointment is in October.

I see. Your GP could contact paed and get the appointment brought forward.

oh emkana. I'm sorry, it sounds horrendous.

What a strange time of year for bronchiolitis, too. Must make it even more worrying.
And so sorry about the news from the specialist.

Shite all-round, hey?

And speaking from bitter experience here, bronchiolitis is an absolute bitch for having very long-lasting effects on the lungs, particularly in kiddies with respiratory issues.

If you ever want a chat to offload do CAT me.

THe one good thing about it was that the very thorough German health system gave ds a good going over - heart ultrasound, ultrasound of all the organs in his tummy, blood tests, ECG, allergy tests, test for cystic fibrosis...
all came back clear.

Just feeling v. depressed about what it might mean that he has bronchiolitis, how it's related to the Jeune's. Also annoyed because before Germany ds had been having a cold for weeks, I kept going back to the GP, but they didn't do anything, I can't help feeling that it wouldn't have got as bad if they had tried something like inhalations before. After all here was a tiny baby of a few weeks old with a possible genetic condition who had a cold for five (!) weeks, and they still said it would just go. Next thing I know we're in hospital...

emkana sorry you and ds had such a miserable time . dd had bronchiolitis at 3 months but suffered no further attacks or respiratory problems so fingers crossed he'll be voer it before too long. It is so common among under 1's , a variation of the common cold virus, so may not in itself indicate any underlying problem.

Also sorry you are no further forward in the diagnosis or prognosis , how frustrating and disappointing.

Message withdrawn

Oh em. It sounds massively stressful, I'm so sorry things are fereling grim at the moment.

bump

Sorry to hear this emkana

bump

Oh Emkana sorry you've been having such a rough time. Think you are coming up against cultural differences between German and UK doctors - Germans are very dogmatic even when they may be wrong, but carry out very thorough investigations to rule out anything dramatic. UK doctors tend to assume stuff is routine until proved different and are often open with you about the difficulty of reaching a firm diagnosis. Both approaches can be frustrating but to be caught in between the two must be maddening.

Here's hoping it is 'just' bronchiolitis as in common but nasty disease in children with no long-lasting effects.

Oh Emkana

I'm so sorry you have all this worry about your beautiful little boy x x x x x x

So sorry to hear what a rough time you have both had emkana. Poor little Sebastian! Make sure you wave all your German test results in the faces of anyone who won't listen and yell "this is how it should be done" at regular intervals. Grrr.

No it's not definite.
I have actually e/mailed some people in the USA now to ask whether they will look at ds's x-rays, at the Jeune's center in Columbus/Ohio.
I just feel that his x-rays need to be looked at by somebody who has already seen several cases of Jeune's. All three radiologist so far are uncertain.

oh no emkana, poor little ds, and poor you.
I must admit, with a tiny baby, I would feel reassured by the thoroughness of the German health system too.

Hope you managed to bring back some nice German bread anyway. I had to leave my lovely tins of golden syrup and baked beans behind at Stansted the other week, as I had chosen to fly on that Thursday.

Gosh Emkana....I've wondered how you and Sebastian were doing, and that sounds like an ultra rough time, I'm so sorry. I hope the US lot respond fast and can clarify things for you and little ds asap. xxx

Oh Emkana. Still praying babe.