MommaMalia Blog: Tales of The Feeding Tube

Tales of the Tube: Weight Check Update

Posted on: July 29, 2010

Today is a short Blog. I know your super excited. LOL I tend to be long winded sometimes and I know my blogs go on and on. I’m sure most of you just skim through them. j/k I don’t blame you. I would too. HAHA! Today, I promise, to be brief and get to the point.

UPDATE:

We had our weight check yesterday. Malia’s nutritionist from CHOP just called. Malia stayed the same weight as the week before so he said that was good. However, he does not want to pull her off the tube feeds just yet. He is worried she is going to regress and lose weight again. SUCKS!!! I really hate this. Tonight Malia will get a new feeding tube. Poor thing. The insertion is the worst part of the whole process. Maybe I will buy her some ice cream to make up for all of this torture.

Here are her stats (7/28/2010):

Weight (KG): 12.4 kg

Weight (LBS) : 27 lbs 5.39 oz

Height (CM): 92.2 cm

Height (IN): 36.3 in

Told you it was going to be short!

Hugs,

T

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5 Responses to "Tales of the Tube: Weight Check Update"

hi! i know it’s an out of the blue, none of my business sort of thing, but i’m the mom of a previously tube-fed little dude, who needed the tube due to crazy aspiration. i’m currently partnering with our local children’s hospital in order to change the care paradigm for tube-fed kids. i wonder if you’ve encountered the principles of the university hospital in graz, austria, and the clinic of dr markus wilken in germany? the basic approach is to allow the child to feel hungry and learn to self-regulate their calories. they also present a number of research studies on how tube feeding affects development, and how calories are absorbed differently when eaten orally. this is not necessarily relevant, but it IS a very different approach to what is done in the US/england/australia. they also recommend against long-term use of an NG tube as it interferes with … eating.

i wonder, too, why your team insists on keeping the tube for 100 calories? i realize the medical establishment has a tremendous fear of weight loss and kids who are not in their charted range of normal, but to me, personally, it seems like a huge intervention for such a small caloric amount (2 teaspoons of nutella would cover it 🙂

again, i am so sorry if this is an intrusive comment, it is certainly not written in that spirit. i am just hoping this ends for you soon. tube feeding is a brain-melting, hard road.
best of luck to you and your little one!

– olga in seattle

Hmmmm. Sounds like her weight is not in the red zone at all and in fact things are going great!! I’m surprised at your nutritionist. Reinsertion of the NG seems as likely to bring a setback as anything else and can be a real morale killer for a child learning to eat independently. I fully support you in going against this advice if it doesn’t sit well with you. You don’t need to agree and there are many good teasons not to. My son is 100% tube free thanks to a German specialist named Markus Wilken (see my blog). If I had listened to the local experts, he would still be 100% tube dependent and vomiting daily. I know you will go with your gut and, fingers crossed, that tube will be history!! Great job!!

Hi, I’m so sorry for the rollercoaster you are on. I’ve been there!

I have to be honest and express some concern, and ask some questions.

How long was she off the tube, during which time she did not lose weight?

The idea of putting in the tube based on your doctor’s fear is insane to me. I am angry at the doctor for his attitude, but I faced it as well. I want you to know that I ignored it, or should I say I pushed back HARD and gave my daughter more time, and as a result, my daughter was successfully weaned.

I know so well that every child and situation is different and I can’t compare mine (I weaned my child from her NG tube at about 4 to 5 months old) directly. But when it comes to tube weaning, some principles are pretty much universal. The child needs time to adjust to eating and hunger. It can take weeks for weight to go up again, and that’s okay. The fact that she did not lose weight should be seen as huge encouragement, not a source of fear!

When my daughter was weaned, she didn’t lose weight for two or three weeks, but she also didn’t gain it. Then, around three weeks, she started to gain and she hasn’t looked back. I just want to make sure that your daughter is being given a reasonable chance. What I’m reading here is that your doctor doesn’t sound reasonable.

Does he know that kids who are tube fed have smaller head circumferences, and that the nutrition taken orally and used much better by the body?

Does he know what it’s like to be tube fed, and the huge shift, mentally and physically, that takes place for the person?

There are so many success stories of toddlers being weaned. I know some of those kids personally. Hang in there, and don’t let doctors undermine you. If I’d listened to them, my daughter would still be on a tube. She’s two now, and a happy eater.

Best of luck.

Also, my site, including tube weaning resources:

http://lifeandtimesofstella.com

I hope that you don’t mind me pestering again. This is a lecture given at children’s hospital by a German child psychologist who has successfully weaned 400 children. The underlying principles are very different than the ones you’ve been told to use (the idea is to put the child in control, no more pressuring or forcing, so the focus is hunger, respect and automony). Please consider it! Markus has been to Seattle (where I live) to do home-based weans. Perhaps you could get in touch with him? He’s wonderful and so experienced with weaning!

mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv

Note, for some people, you have to take off the “mms” to view the video.

Best of luck!

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