2 1/2 Year Old Boy Feeding Difficulties after PEG fitted
Hi, my little boy is 2 1/2 now and was born with CP from birth due to difficulties encountered at birth. (Long Story). He had cooling treatment and spent his first 8 weeks in Nicu. At 4-5 months old he developed Infantile Spasms (West Syndrome) and was treated with ACTH. This thankfully cleared it all up and he has been seizure free now for 15 months. Since birth he has struggled feeding and initially had a naso gastric tube (The whole time he has had a safe swallow). Since he was around 6 months old he has managed to eat orally and drink fluids but not enough! After nearly 2 years of trying to feed him orally with high calorie supplements etc we decided that maybe a Gastrostomy would be a good move for him. Prior to going in to hospital he would manage around 20-25 spoonfulls of savoury plus a yogurt and around 25mls of milk on an average feed. Since he had the PEG fitted he seems to have gone completely backwards. He picked up infections in hospital and also had 3 teeth removed at the same time. This was enamel difficiency caused by the trauma at birth.
We are now at the stage of giving him 70/30 tube feeds to Oral feeds and it is really not what we wanted. There are a number of possibilities as to why this has happened but i am wondering if anyone has had similar experiances with PEG feeds? He seems to gag after a few spoonfulls of solid food which he never did before. He is also sick fairly often from the gagging so its like a vicious circle! Here are my theories: -
1. Enlarged Tonsils/Adenoids - Has anyone any experiance with enlarged tonsils and CP? He seems to have trouble clearing his throat and seems to have more snot/catarrh present all the time.
2. Reflux - Would the increased milk intake (High Calorie Fortini) be causing him reflux?? He did have problems with Reflux when he was a baby. As soon as he started on solids he seemed much happier! I am wondering if i have just answered my own question here..
Anyone who has any experiances with PEG feeding or Tonsilitus or Reflux with a 2 1/2 year old Quad CP then please get in touch. Thanks
Hi, My grandson is nearly 3.1/2 and is about to be fitted with a PEG. Also has a normal swallow but we just can't get the volume in to get him to put on weight. He also has only 4 molars as the rest were removed again as no enamel and they just crumbled away. We have also done the high cal foods and supplements but a bout of illness when he started nursery just wiped out all the hard work in a matter of weeks, and for the first time he dropped weight. He has always been just under the bottom line. He doesnt have reflux, but gags a lot and vomits frequently, so much so that he has developed a few behavioural issues like gagging at the sight of food. He's also a poor drinker, causing a few constipation issues but not major ones.
Ells doesnt have tonsil problems but when he has a cold the mucus DOES make him gag and vomit much more, so you could be right.
We are hoping to feed overnight with top ups through the day, but have more or less the same amount of solids and fluid orally as at present, but to not have to get to a point where he vomits and then we just have to refeed him which is awful for everyone, and sometimes it feels like force feeding.
He also is quad CP. Not looking forward to the PEG but most stories we hear are positive, but we just want him not to look so thin and tired and to have more energy than presently. I'll keep an eye on what replies you have as we are new to the PEG thing.
Hi
You might find this link helpful:
http://www.pinnt.com/Half-PINNT.aspx
Best Wishes
Forum Moderator