What can I say?<img src="i/expressions/brokenheart.gif" border="0"> ....... I dont know where to start! <img src="i/expressions/face-icon-small-shocked.gif" border="0">
My beautiful, always smiling son was born 01/07/07, so now just over 5 and a half months. We live in the UK and are Indian. Im 27 and my wife 26 are stunned with the news that our son has CF.
Story really starts when he was born, he weighed in at 9.5 lbs, a repectable weight. He failed to put on weight since then and weighs 13lbs at the moment. Was a restless child, always crying, green poo`s.
My son would also be wheezy, first told asthma, then bronhalitus, and this seemed to be getting worst and worst.
His feed would last approximately 40 mins, and he would feed 6-7 oz every 2.5 hours with out fail.
He would poo every feed, and would do so 30 mins into his feed.
After 3 months was reffered to hospital as weight gain was non existant. Doctors diagnosed at that point as milk intolerance. He had his milk changed to Neutramagin, started to put on weight and was alot more settled. This stopped and weight gain was non existant again.
We were then reffered to a dietician and his milk was changed to Neocate, there was no change. In fact dietician was concerned as got him reffered to hospital.
His feeding and pooing habit remained the same.
Again his milk was changed to Pregestimil.
Now he poo`d most feeds but would miss the occasional one or 2.
His peadratician had requested alot of bllods to be done and also a sweat test to be completed.
When my son would have his naps, (power naps as we call them as they last no longer then 30 mins) he would sweat alot, and i mean alot, baby growed would be wet. We noticed it was also very salty as when you kiss him you can taste it.
Now yesterday, was my celebration of Eid (muslims xmas)
We were booked in to have a endoscopy and a biopsy. The anesthetist came to examine him and was not hapy as he was wheezy, and advised us that due to this they would cancel and rearrange as they did not want my son to wake up on a ventilator.
Later that day, a Consultant visited us and informed me and my wife that our son, has CF. We were obviously upset, and shocked and truly petrified. My beautiful 5.5 months old son, always smiling even when his breathing was on overdrive, even when he pooo`d, even when he cried had CF.
Noone in our family suffers from it, basically non existant. Obviously me and my wife are carrying the gene.
At the hospital there is a team of around 7 staff who deal specifically with CF children. I`ve been told pur son is 69th in Leicestershire, so elite.
The doctors have admitted my son as he is quiet wheezy, and has been for a while. He has been given 2 antibiotics to take orally, and one shot straight in the blood. Also,he has been given enzymes to take, half a capsule with each feedn and also vitamins.
A little search on google and im in tears, life expectancy 31 years etc.
Sorry for the long message, but just wanted to vent and give a intro.
regards
Mohammad
My beautiful, always smiling son was born 01/07/07, so now just over 5 and a half months. We live in the UK and are Indian. Im 27 and my wife 26 are stunned with the news that our son has CF.
Story really starts when he was born, he weighed in at 9.5 lbs, a repectable weight. He failed to put on weight since then and weighs 13lbs at the moment. Was a restless child, always crying, green poo`s.
My son would also be wheezy, first told asthma, then bronhalitus, and this seemed to be getting worst and worst.
His feed would last approximately 40 mins, and he would feed 6-7 oz every 2.5 hours with out fail.
He would poo every feed, and would do so 30 mins into his feed.
After 3 months was reffered to hospital as weight gain was non existant. Doctors diagnosed at that point as milk intolerance. He had his milk changed to Neutramagin, started to put on weight and was alot more settled. This stopped and weight gain was non existant again.
We were then reffered to a dietician and his milk was changed to Neocate, there was no change. In fact dietician was concerned as got him reffered to hospital.
His feeding and pooing habit remained the same.
Again his milk was changed to Pregestimil.
Now he poo`d most feeds but would miss the occasional one or 2.
His peadratician had requested alot of bllods to be done and also a sweat test to be completed.
When my son would have his naps, (power naps as we call them as they last no longer then 30 mins) he would sweat alot, and i mean alot, baby growed would be wet. We noticed it was also very salty as when you kiss him you can taste it.
Now yesterday, was my celebration of Eid (muslims xmas)
We were booked in to have a endoscopy and a biopsy. The anesthetist came to examine him and was not hapy as he was wheezy, and advised us that due to this they would cancel and rearrange as they did not want my son to wake up on a ventilator.
Later that day, a Consultant visited us and informed me and my wife that our son, has CF. We were obviously upset, and shocked and truly petrified. My beautiful 5.5 months old son, always smiling even when his breathing was on overdrive, even when he pooo`d, even when he cried had CF.
Noone in our family suffers from it, basically non existant. Obviously me and my wife are carrying the gene.
At the hospital there is a team of around 7 staff who deal specifically with CF children. I`ve been told pur son is 69th in Leicestershire, so elite.
The doctors have admitted my son as he is quiet wheezy, and has been for a while. He has been given 2 antibiotics to take orally, and one shot straight in the blood. Also,he has been given enzymes to take, half a capsule with each feedn and also vitamins.
A little search on google and im in tears, life expectancy 31 years etc.
Sorry for the long message, but just wanted to vent and give a intro.
regards
Mohammad