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Old 09-21-2008, 07:41 AM   #1
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Feeding Tubes

At what age and waight did your dcs recommend a feeding tube. My 3 yr. old waighs only 27 lbs. She has Cerebral Palsy, and because of that oropharyngeal difficulties. I guess that means she has difficulty swallowing. She is on honey thick pediasure for most of her daily calories, and some solid foods that she likes and will eat. But i'm still conserned that she is not getting enough nutriance. I'm really worried about her.

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Old 09-21-2008, 07:53 AM   #2
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Re: Feeding Tubes

I am assuming you have had an swallow study done if she is on thicker foods, did they see any asperation with that?
My DD has a GButton- because she was aspirating 90% of her feeds, at any consistincy...
Before you jump to a feeding tube, try out therapys and stuff- because a feeding tube is not a "quick fix". In fact we have had so many problems with allergies, and infections, and odd random things... that it was so much easier to mix her the formula thicker and things. They do make formulas with higher calories that you could try-
Your daughter would have to be deemed failure to thrive to get a feeding tube before they will do one if she is not aspirating...
I guess my main suggestion here is- don't just jump on one becasue it seems like it would be "easier"... because for one it is just a whole bunch of other issues... and two once a child uses a feeding tube- it is so very difficult to get them off of it..... IT IS NOT A QUICK FIX.
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Old 09-21-2008, 01:56 PM   #3
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Re: Feeding Tubes

she has what they called micro asperations on all thickened liquids but she does the best on honey thick or thicker. she also has speech therapy once a week, and she is working on oral moter stuff with catie. when she was 12 months old she was labled failure to thrive and they put her on high calorie formula and pediasure. but it does not seem to be working anymore. i just looked at her growth chart from the doc. and it says that she is in the 5th % for her growth. I'm just really worried. she just recently started haveing seizures again, and i'm concerned that her eating has something to do with it.
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Old 09-21-2008, 02:07 PM   #4
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Re: Feeding Tubes

I would talk to your doc then. And if they don't seem concerned- get a second opinion... You know your child best! I am sorry if I sounded rude in my first post.
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Old 09-21-2008, 02:14 PM   #5
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Re: Feeding Tubes

I didn't think you where rude at all. I just want to know what people think about it because I think that her develpmental ped. is going to suggest getting one next week when we go see her next week. Catie has not gained any waight in the last year. I would rather do anything but get a feeding tube. but if it will help her to get better than I guess thats what we will do. My DH is totally against getting her one. I'm just out of options i think
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Old 09-21-2008, 02:29 PM   #6
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Re: Feeding Tubes

We never really got an option... becuase during DD first swallow study- she got less than 1/2 an ounce drank and they stopped because she aspirated 90%... but we did try the NG tube (down the nose) first... and I have to say, when she was in the NICU that was ok... but when she had it put in again at 12months... that was not any good... she would pull it out all the time... I was putting it back in every feed- and her poor nose started to bleed like crazy... Now she has the Mickey button... and it has been lots of ups and downs.. but she went from 13lbs at 12 months to 23lbs at 18months... My daughter has CP as well.
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Old 09-21-2008, 04:50 PM   #7
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Re: Feeding Tubes

Catie was 14lbs at 15 mths old. thats when a nurse noticed that she was losing alot of her formula out of her mouth and coughing alot during a feed. Catie had been in and out of the hospital at least 6 times the first year of her life with pnumonia. After the first swallow study they told me that it was probably asperation pnumonia. she still gets it but not as much. now at 36 mths old she waighs a total of 27 lbs. she has been gaining waight so slow and now she has not gained any in the past year. the pediasure worked for a while but it does not seem to be working anymore. As of last summer. that when we did her last swallow study. she was still asperating anything thinner than honey. and she still asperates that just not as bad. the is supposed to be on honey thick liquides and purees. but she refuses the purees and only likes simply thick to thicken her drinks. and i don't blame her. the other stuff just get thicker and thicker the longer it sits. and the simply thick gel does not.
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Old 09-21-2008, 08:10 PM   #8
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Re: Feeding Tubes

Children with tight muscles burn a lot more calories then children who are not constantly contracting their muscles. For example my son is the exact opposite he has hypotonia and can't move the typical amount of a toddler so instead needing to consume 1300 calories a day he only needs 900 to maintain weight and have enough to support brain and body growth. Check out cerebral palsy growth charts here. It sounds like weight wise she is doing really good. My son has a feeding tube and has been fed either via TPN (IV) or TEN (g-tube) his ENTIRE life. We consider it a good thing if he is even on the growth chart and being at 5% would be something to celebrate. Although his GI issues lie more in the holding food down long enough to digest. He has to take high doses of motility drugs.

Personally I think from your post you are jumping the gun as far as worry on weight. Now if there are other factors like she was at 75% and dropped to 5% then maybe it is time to raise the red flag or if she is prescribed a certain amount of calories and you aren't even coming close to getting the calories in her then it might be time to raise the red flag. You have to remember growth charts are an average not a score, being at the 5% mark is normal for even some typically developing children regardless of abilities.

As far as aspiration issues I would take that very seriously. I would be worried about permanent damage being done to her lungs. That issue I would bring up to the pediatric GI and maybe a pulm doc. If they don't take it seriously I would get a second opinion. I have known a few kids who have been put on 100% tube feds (gastrostomy plus fundo to prevent refluxing into the lungs) purely for aspiration even though they are capable of consuming enough calories.
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Old 09-21-2008, 08:23 PM   #9
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Re: Feeding Tubes

Were dealing with this now too...im pretty sure at our next GI appt they are going to talk about a feeding tube...dd is below the 3rd percentlie and keeps not gaining...SHe has EE though and mulitple food allergies. She takes Neocate jr formula (supposed to be at least 30 oz a good day is 25oz) some rice, apples, pears, potatoes and chicken..She cannot eat enough to actually sustain her right now and she keeps loosing. Im actually at peace with the Tube option as i have done everything i can possibly do for the last 10 months to get her to gain. But i cannot force the formula or food. Good luck no matter if you do or do not get one!
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Old 09-21-2008, 08:56 PM   #10
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Re: Feeding Tubes

Catie is Hypotonic as well. she is really floppy. We don't have a pedi GI doc at the moment put i think we may need one. I'll talk to her other docs this next week about it. I'm just worried because she started to gain waight when they put her on pediasure, but for the last year she has not gained any waight at all. thats what worries me the most. that she has stopped gaining and started to have seizures again.
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