Aaaaah I see, was he born at full term? That must have been hard and a worry when he wasn't putting too much weight on and then losing it. I think for Zack he was slowly increasing his weight, it was only when we switched to the Infatrini milk that he put on loads so much so that he isn't on his recommended calories for his weight as it would be too much for him and I think he would be over-weight. He's a stocky little boy, small in height so any more and I think it would also be harder on his mobility too in terms of movement.

yer he was full term, 8lb 20z born but in scbu for 3 weeks with respiratory distress syndome and reflux that was causing apnea episodes. Once he came out we thort he was fine then at 5months he just stopped gaining and started going up and down. Because his condition affects his renal function we were told that it becomes noticeable at that age as thats when you start weening and their kidneys start working fully....or not as euans turned out

tbh....looking back, he always looked ill. looking at my 7month old now compared to how euan was he was really delayed in everything!

xx

And this is the key issue here we waited 7 months of knowing something was wrong with the health visitor giving us the glances,the keeping the food diarys routine,the blood tests,repeated blood tests not showing anything,the did a DNA profile screen and they lost the results and then eventually they did a urine test the most simpleof the lot and this showed Euan was losing all essential body salts and other loses so they performed a specialist test and then we reached the diagnosis.
Which could have been found several months earlier had they not lost the results and before that treated us like over reactive parents.
As a parent you know if something is not right and its bad it feels like they look at you rather than try to help you.

Bec,
Have they ever performed a urine sample on Charlie at all as it could be any kind of metabolic condition which is a very common factor in failure to thrive in children.
Dont get down about it and i know its hard not too because i remember exactly how we felt and ill be honest i felt like a failure at times as well especially when some results were coming back clear.
To this day i kick myself wondering if things would have been easier had we got the results quicker for example Euan wouldnt have developed Ricketts and been as ill at first before starting treatment.
I remember at the time i was angry and i sought legal advice and they said i had a case as Euan's condition had worsened because of the loss of results but then when i calmed down i couldnt bring myself to sue the hospital as they did eventually find the diagnosis which many doctors would have missed and its true to say had the doctor not have been as experienced as he was we may now still not have a diagnosis or even worse no Little ray of sunshine!

Bec,
Dont give up and try to be postive and try and focus on whats important and thats getting the best care for Charlie.
Linzi has previously suggested Alder Hay is this an option for you?

alder hey is where hes going having his gasostromy x its were he had his operation to sort his pyloric stenosis out x but i cant get there on a week 2 week basis its too far for me to get to on public transport

(03-09-2010 10:45 PM)becncharlie Wrote:  alder hey is where hes going having his gasostromy x its were he had his operation to sort his pyloric stenosis out x but i cant get there on a week 2 week basis its too far for me to get to on public transport

How far is it approx?