We went to see the GI doctor last week and due to Gershie's weight, 33kg about 72.5# at age 15, they think he is not eating and getting enough fluids. Due to a weight gain after his Nissen two -3 years ago, and his being really hard to lift, I decreased him from 5 cans of Osmolyte to 4.5. The MD wants him on at least 5 and a total of 1750-2000 cc of fluid, about 2 litres. That means in addition to the 5 cans and liquid with his pooping medication, another 500 cc or half a litre. Gershie has never done well with lots of fluid. I added it but I think one of his legs is a little edematous. ANy body else have a child this large, or are you with me, who cares what he weighs as long as he is "healthy" Notice the quotes.

Debby

hello debbie

a couple weeks a go paul age 2 went to the gi and said his weight gain is steady he is 28lbs he is getting 4 8ounce bottles but they uped it to 4.5 its peptamen jr with fiber they are 250cals a bottle and gets 960ml plus 7 medications i feel he is very tall for his age and his belly is skinny and legs but his arms and cheeks are very puggie but sence April of 09 when he got his g/j tube he was 21 ilbs so he has gained alot within the months that past

Hi Debby..

We have been fighting the calorie/fluid battle for years.  Nicholas is 11 and weighs 45 pounds.  The docs would love to see him weigh 50.  So we have tried numerous formulas that have double the calories, but Nicholas does not tolerate them.  We have tried giving him more cans of food, but then we can't get enough water into him.  Like you they want us to give him 5 cans of food (Nutren Jr) plus 800mls of water.  Not enough hours in the day.  Nicholas cannot tolerate high rates of feeds.  So now he his continously fed all day.  Still we can barely get 3 1/2 to 4 cans of food and 24 oz of water.

If you recall Nicholas has the Strider breating and if we feed him at a high rate he starts breathing faster and burns the calories faster than they go in.  I'm at wits end. 

I think Gershie looks great by his picture.  He certainly doesn't look under nurished. 

Oh, by the way.  Nicholas has a foley mickey, which is longer witht he balloon at he end.  The reason is that with is scoliosis his tummy is up under his ribcage and with this foley we can guide the tubiing more down and into his tummy.  We still use bags, just not the gravity bags.

Good luck. 

Brenda

Gershie's scoliosis has gotten worse too. It is his lower back and I hate looking at the xray. I wonder if we had been stricter all those years ago with the body jacket that Gershie hated he would we have avoided this. Yet they sit in these chairs or at least with Gershie they seem to lay him down in bed most of the day, and he is only in his stander about 30 mins a day. Maybe he would be taller, but who knows. I think when Gershie was 11 he weighed more than Nicholas, but he could not tolerate the volume. We were doing 1 can at school, one when he got home and 3 overnight, but he can handle 4 at bedtime if we have to. I am going to try to explain to the MD, that this is just the Canavan kids, though I thought some of the kids could tolerate more fluids. We rarely give Gershie any water, so we may have to do 4.5 Osmolyte and 1-1.5 cans ~350 cc water. Thanks for your thoughts

Hi Debby,

Angela is 16 now and she weighs about 80 lbs.  She is on a continuous feed (through J) which amounts to about 4 cans of Nutren per day.  We make a mix of the Nutren, water, and Duocal.  She gets 4-5 scoops of Duocal per day.  Are you familiar with that?  It is a powder that adds extra calories.  Its a very easy way to control the weight gain or loss if that's needed.  Angela is also very heavy to lift for me now, and I've now got back problems, so I've resorted to using the Hoyer lift.  She seems to like it since it's like going for a ride in the air:)  Her scoliosis is very bad also, and we were diligent about wearing her vest 24/7, so don't feel badly about that.  Her Dr said it would progress regardless of whether we used the vest or not, and it has, but I do think it has helped her curve form in such a way that she can  still sit up straight and is not uncomfortable when sitting.  She uses an Easy Stand at school alternating 20 min standing and 20 min sitting for about 2 hours.  She has pretty bad contractures in her hamstrings now, so her knees get bruised easily, but she still tolerates the standing pretty well.

Hope this helps.  Email me directly if you want to chat further at larson526@comcast.net.

Take care,

Patty