Hello to all, Nicholas is 11 and doing well even though he has major scoliosis.  My question are there any other older children that have scoliosis.  I know that Brianna Burkett had the sugery a few months back and is doing well.  I have to give major kudos to Yulinda.  At this time it isn't affecting any major organs or his respiratory, as most of you know Nicholas has always been my mini Darth Vador with his loud breathing.  Anyway just wondering if there are any other parents dealing with this.  Oh, and one more question, are any other children having a tough time gaining weight.  Nicholas has finally made it to 45 pounds, but the docs would like to see him at 50 or more.  We have tried every formula with extra calories, it just doesn't sit well with his tummy.  Any suggestions????

Thanks and hope all is well,

Brenda

my son paul is 2 and he was 20 pounds in april 2009 before he got his g/j tube and before they did that they put him on ducal its helps gain weight 2 weeks later he was 24 pounds and now he is 27pounds and doing good but his formula never sets with his tummy aswell he is on peptamen jr with fiber they changed him 3 times and i feel it is still not working

when lilliana turned 1yr old (7months ago) her dr put her an pediasure.  the strawberry and chocolate doesnt agree with her and we've tried vanilla with fiber but we thought it upset her tummy so we would do 1 bottle with fiber and 2 bottles of plain vanilla with made her poop thicker which has always been runny (we thing its from the CoQ10) she gets 24 oz every day each bottle is 8oz. her dietition recommended duocal which would probably be good for the older kids  but the pediasure has been doing ok. shes putting on weigh pretty good since gtube placement in march but now she doesnt like oral feedings its like she gave up oral eating.  she now 22 1/2 lbs.she also has bad reflux so she has to be siting up all day or she throws up.  shes been putting on good weight since we added feedings while shes sleeping (shes now doing feedings every 3 1/2 hrs with meds 1 1/2 hrs before and reflux meds 3x a day 30 mins before feeds) also her home nurse said her gains are good and that they dont want her gaining too much too fast

Also she breathes really loud like shes conjested. when we're out strangers ask if shes ok because it sound so bad like shes sick. we had it checked and the doctor said its her voice box (laringgomalasha) thats not how its spelt but thats what it sounds like.

Hi Brenda,

Hope all is well with everyone and glad to hear Nicholas is doing good.  Angela's scoliosis is severe and has been for about 3-4 years.  We opted against surgery.  Fortunately her curve has stopped moving at this point and it has not affected any major organs either.  It does effect one of her lungs more than the other, and it looks pitiful of course, but she has been holding her own respiratory wise.  Although I must tell you that she is on 3 nebulizer meds  plus has the Vest she uses 2x day.  She has worn a flexible TLSO for years now 24/7 and I think it has helped her a lot.  Although her curve is severe, she still can sit up straight and is very comfortable in her wheelchair and stander.  She is gaining weight pretty well since she has a G/J tube so we can control her nutrition.  I am happy to talk with you if you have any questions or just want to trade stories.

Take care!

Patty

does scoliosis happen right away.  or does it start to happen as the kids get older. because as of now lilliana doesnt have it so does that mean she never will?

The scoliosis usually begins around the onset of puberty in girls I know.  It is very subtle at first, but gets progressively worse as the children grow but will stop at some point.  I'm not sure if all of the older kids have it or not.  So you don't need to worry about this for a while yet hopefully.

I want to attend to the topic with another question.

I was suggested to use Pediasure just after the operation of G Tube and Nissen. After Sarp got the Pediasure he had a very bad pain in stomach and I have asked to stop it. So we are continuing with Formula (Anti reflu) for the time being. But I was looking for options for him.

1- As for his body weight he is over 9 kilos. And I do not want to make him overweight. Because he is almost same with his twin even his twin is walking and never sitting. Also Sarp is shorter than him. In Turkey dietitions are not giving a special diet to the disabled persons. So I do not know what I should do for Sarp.  Do somebody help me to arrange a diet program. I know it is very difficult to arrange it but if you have a calory program for a different age range, I can ask the dietition to arrange his diet (that calory program will be more reliable than mine) according to the total calory he should take.

2- Do you use a pump for feeding? I have been using injection for feeding him when we were using NG. And after the G Tube operation we are feeding  every two hours. Every feeding takes 30 mişnutes. And I do not believe continous feeding is good for reflux? (By the way knock on the wood before reading: Sarp stopped throwing up after Nissen Fundoplication)

When I feed him when he is sleeping he wakes up due to gas problem and cries everytime. So I prefer to feed him when he is awake so that he can move legs and make exercise after feeding.

3- Lillianasmom;

We have been checking Sarp's larynx since we had had operations. As you know it is important before taking anesthesia. He has laryngomalacia. It means that his larynx is soft. But doc.s are telling that that can be recovered after age 1. Sarp's breathing voice is a bit lower than 6 months before. But still there is something that she is conjested. Diagnosis for laryngomalacia was done by a tube camera when he was 4 months old.

4- Is there any indicator for scoliosis, any malformation or other?

Thanks to everyone...

Bihter

Bihter

Lilliana is pump feed every 3 1/2 to 4 hours  (120 ml at a rate of 260ml/hr)  we try to feed her 720ml a day of pediasure.  for sarps age you could probably do around that amount for his age.  we usaully have to vent her tube at least after shes fed or after she gets 60 ml then she doesnt cry in pain especially if theres fiber in it.  if hes not gaining weigh you could try duocal, you would just add the powder to his formula, it has no taste to it. do you use a pump because i think that would be easier on you. we set the pump to go off automatically. www.myduocal.com  we have found that the feeding at night go well she doesnt throw up as much (the head of her crib is raised up a bit.) your doctor probably suggested pediasure because its all one consistancy (liquid) is your formula a liquid because you could probably get formula is a liquid. i would probably be better for the tube. does he do any oral spoon feeings. we do a little bit of tasting with herbut not much because we dont want food to get in her lungs.another thing you could try is adding benecalorie.  its kind of like the duocal you add it to the formula.  http://www.nestlenutritionstore.com/general-itemdetail.aspT1=BENECAL+24CU&sourceId=3&mediumId=4&campaign=BRAND>&adGroup=BENECALORIE>Benecalorie&keyword=Benecalorie&matchType=e&utm_source=msn&utm_medium=cpc&utm_term=Benecalorie&utm_content=ad1&utm_campaign=BRAND>

lilliana also has laryngomalacia. the doctor said hopefully she will out grow it and that most babies do by 2. but her breathing gets worse since she was a cold. she is on pulmicort and albuterol through a nebulizer machine it seems to help with the noisiness.

Tiffany <3

bihter

my son paul is tube fed by formula it is call peptamen jr with fiber it is on the lines of pedisure but it is a liquid formula my son take 240ml 4x a time running over an hour because my son throws up alot so we run it longer than normal

paul  went to his gi doc today and he was orginally on peptamen jr w/ fiber and he got changed to elacare today and he is going to try that out and see if it works and he is on erythemicin to help his stomach drain out quicker