Log In Sign Up

Kids with chromosome problems???


Forum: Children with Special Needs

Notices

Welcome to the JustMommies Message Boards.

We pride ourselves on having the friendliest and most welcoming forums for moms and moms to be! Please take a moment and register for free so you can be a part of our growing community of mothers. If you have any problems registering please drop an email to boards@justmommies.com.

Our community is moderated by our moderation team so you won't see spam or offensive messages posted on our forums. Each of our message boards is hosted by JustMommies hosts, whose names are listed at the top each board. We hope you find our message boards friendly, helpful, and fun to be on!

Reply Post New Topic
  Subscribe To Children with Special Needs LinkBack Topic Tools Search this Topic Display Modes
  #1  
May 29th, 2009, 09:26 PM
Regular
Join Date: May 2009
Posts: 82
My daughter is lazy eater and poor gainer so far in her short life. The dr. Says it is associated with her deletion of the 2nd chromosome. Just curious if any of your kids had the same issue and any ideas on getting the lil peanut to get more interested in eating. She is only 8 weeks and i pretty much force feed her so she will eat. Strongly feel a feeding tube may need to be in her future. A feeding specialist is meeting us next week. Hope she can turn things around.
Reply With Quote
  #2  
May 30th, 2009, 07:56 AM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
Posts: 9,023
Send a message via Yahoo to Ditzzy
I know we have a couple of kids with feeding issues and even g-tubes. I'm sure they'll answer when they see this. Ava has feeding issues and has been on special diets and steroids her whole life for it. Her problems are from obstructions and being able to breathe and eat. Her feeding is always a great way for us to know how hard she's working for breathes. She sees a Feeding Team for her problems.

Has your DD had any type of swallow study done?
__________________




Thank you, tasha_mae, for my siggy!
Reply With Quote
  #3  
May 31st, 2009, 12:08 AM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
Send a message via AIM to iamkc
Force-feeding your child sucks. I did it every day, all day until Milo got his ng-tube. A month later, he got his g-tube placed. It has been a lifesaver, without exaggeration. I'm not saying that your DD will need a feeding tube, just that sometimes, other measures are needed. I hope that the feeding team will work for her. Most kids have amazing success! RSS comes with lack of appetite and poor weight gain. And even when they're gaining well, the specialist (there's one RSS specialist in the world) recommends strongly that they stay between 10-25%ile height-to-weight ratio because of their inherent blood sugar issues leading to other glucose issues. Milo is still below 1% ht/wt ratio, but he has gained...slowly but surely. And I think that as he gets a little weight on him and gains a little strength, he has a slightly better appetite. He still gets over 75% of his daily calories through his tube. This is his upswing. In his downswing, he may be getting 99%.

I don't want you to think that because Milo had to have a g-tube that your wee one will! Most kids DO outgrow it, or just plain get better. Sometimes docs will just place ng-tubes for a while until a child gains weight and strength, avoiding the surgical option. If you absolutely can't get her to eat and feeding therapy doesn't work, an ng-tube is a great, benign option! Worth considering, anyway.

And, of course, if she needs it, the g-tube is also great...and can be removed later in life if she's able to eat, maintain and gain weight, etc.

But first things first-let's hope that the feeding team figures her out!

(Side question-has she had her palate examined? GI studies?)
Reply With Quote
  #4  
June 1st, 2009, 08:45 PM
Regular
Join Date: May 2009
Posts: 82
she hasnt really had any gi studies. some children with her chromosome deletion have cleft palate but her genetic dr examined her mouth and said she had short palate but not cleft. she started vomiting a few weeks ago and we started fortifying her breast milk with higher calorie formula. now i have her weaned to just the formula and she started zantac. the vomiting has decreased but her appetite hasnt. she eats ok for the first 15 minutes or so then just kinda shuts off.

with an ng tube would daycares take her?? i cant afford to stay at home and care for her at this time. snooping around on these message boards i see some moms have put ng's down at night and removed them in the day. that seems like alot of trauma to their poor lil nares but i would be ok trying it. im a registered nurse and put them down on adults all the time so im sure i could figure it out.

i just obsess about her weight. she is only 6 pounds 2 ounces and i weigh her weekly and just pray she's gunna sprout and she gains 2 ounces if she is lucky in a week or 2. thanks so much for everyone's input. i hope the feeding team has some magic to give us too.
Reply With Quote
  #5  
June 2nd, 2009, 04:57 PM
Regular
Join Date: May 2009
Posts: 82
how long did they wait to place the ng then g tube for milo was he losing weight or not gaining enough???
Reply With Quote
  #6  
June 3rd, 2009, 08:01 PM
iamkc's Avatar Platinum Supermommy
Join Date: Aug 2005
Location: Montana
Posts: 8,137
Send a message via AIM to iamkc
SO sorry I didn't see this earlier! When Milo went home from the hospital, he was 4 lbs 10oz. At his 6-week checkup, he hadn't gained. At 7 weeks, he had to go to the ER with a fever and was admitted. They placed the ng-tube then because he still hadn't gained, and no one could get him to eat. The ng-tube turned out to be pretty easy. HE hated it and would try to tear it out, but it was secured well to his face-he only got it out a couple of times in a month. He had his g-tube put in at 11 weeks old. Believe me, I obsessed over Milo's weight-and you're not wrong to! It's your baby and YOU see the daily ins and outs of her eating habits.

I would check around with UCP and other places like that. I don't know if she'd qualify for babysitting/daycare there, but they'd probably know of someone who could care for her!

If the vomiting has decreased, she may start gaining a little. If she eats AT ALL, they may try an appetite-increasing drug. If she's tiring out, it could be that she's using all of her calories to eat, OR it could be something anatomical. Some kids have weak jaws that need a little extra support when they eat. Have you tried special nipples for her? I breastfed my first, planned on it with Milo, but he couldn't suck-no reflex and too weak. He also had several mouth deformities and a small, set-back chin. SO, I started pumping and we started using the Habermann feeder from Medela. He was able to eat more, and more quickly. He still didn't eat enough, so everything else was needed, but sometimes, the special feeders can do it. (The feeders are for kids with cleft/soft/high palates, or any other issues.)

I could go on and on...I'm sorry. I still obsess about Milo's weight. The kids with his disorder have to be on a ridiculous number of calories per day to gain anything at all. He's below 1% for his height/weight ratio-short and skinny. He lost weight recently, so now I'm obsessing again!

When do you go to the feeding clinic?
Reply With Quote
  #7  
June 3rd, 2009, 08:40 PM
Regular
Join Date: May 2009
Posts: 82
WHAT DOES UCP STAND FOR? AN NG HAS BEEN KINDA THREATENED SINCE BIRTH BUT SHE'D GAIN JUST A LIL. AFTER SHE STARTED VOMITING SHE LOST 3 OUNCES A FEW WEEKS AGO. THE NEXT WEEK GAINED ONLY AN OUNCE. THEN THIS WEEK GAINED 4 OUNCES IN 6 DAYS WHICH IS GREAT FOR HER.

IT SEEMS IT IS ALOT OF WORK TO EAT BUT SHE IS STARTING TO GET SOME FASTER SINCE STARTING THE ZANTAC. I DEFINETLY THINK AN APPETITE-INCREASING DRUG WOULD PROBABLY HELP TOO. DID MILO TRY ONE? HER PALATE IS SHORT THE GENETIC DR SAID SO ONLY 1 LONG NIPPLE WORKS REAL WELL SO FAR BUT IM EXPERIMENTING. ADDY ALSO HAS A SMALL SET BACK CHIN. THE FEEDERS ARE LOCATED WHERE? MEDICAL STORE ONLY?? MAY LOOK INTO THAT TOO.

A FEEDING SPECIALIST CAME TODAY AND TAUGHT ME SOME EXERCISES TO STROKE THE INSIDE OF HER MOUTH AND HER TONGUE. HER TONGUE HAS NO REAL GROOVE IN THE CENTER SO THESE EXERCISES ARE SUPPOSED TO START TO CREATE THAT MAKING SUCKING EASIER. ALSO STARTED DOING SOME FACIAL MASSAGE WHEN SHE ISNT EATING TO STIMULATE ALL THE MUSCLES IN HER FACE. ITS COMPLETE CRAZY THAT THEY WOULD WORK ALREADY AND ITS PROBABLY A COINCIDENCE BUT SHE HAS BEEN TAKING FROM 45-55 ML'S USUALLY; VERRRY RARELY ROUTINELY WILL TAKE 60 ML'S A FEEDING. AFTER DOING ALL THE NEW EXERCISES HER LAST THREE FEEDINGS WERE 60 ML,60 ML, 70 ML'S.

THANKS SO MUCH FOR UR GREAT HELPFUL INPUT AND I WILL PRAY MILO PUTS THAT WEIGHT ON.
Reply With Quote
Reply

Topic Tools Search this Topic
Search this Topic:

Advanced Search
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off



All times are GMT -7. The time now is 07:02 PM.



Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2014, vBulletin Solutions, Inc.
Search Engine Optimization by vBSEO 3.6.0