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Old 04-17-2008, 07:08 PM - Thread Starter
 
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For mamas of tube fed kids, can you let me know what events led up to the decision to tube-feed? I mean both NG and G tubes.

I just talked to DS's nutritionist, and she seems to think we are close to the point where tube feeding might be necessary. I will be seeing the gastro next week, and will get his latest test results then. We didn't talk about it at all during our last visit, and I'd like to get a lay of the land here- I need to know if the situation is as dire as the nutritionist suggests.

FTR, we are coming up on 2 months of nearly flat weight gain (2 oz), and no length or HC growth. Developmental delays, lots of vomiting and diarrhea, currently on EBM and Elecare supplementation, total intake around 18 oz a day. He just won't eat more than that 90% of the time, although he has a few days here and there where he'll do 21 oz.

Thanks for any info you can share!
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Old 04-17-2008, 08:42 PM
 
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I know you asked for input from mom's actually tube feeding, but I'll throw our story in - My DS is 5 months. He takes 18 oz/day of 24 calorie formula + 1 cup of rice cereal (240 calories). About a month ago, the nutritionist and (crappy) dev ped (that we'll never see again) mentioned tube feeding to us cause he would not eat more than 3 oz at a time and only took 18 oz. He had slowed to less than a lb a month. We were really resistant because he is growing at the same rate his siblings did. Then we figured out that he needed his feeds thickened. With the addition of the rice cereal, he is eating more efficiently and getting the calories the nutritionist wanted him to have. He gained a bit over a lb last month and the nutrionist is happy. We haven't had the vomiting etc.

However, I will mention my baby is very allergic to corn. He can't even eat Alimentum ready made without breaking out in a rash which is what the nutrionist says they reccomend for corn allergy - there is calcium citrate in it and that is derrived from corn even though the manufacture told me it doesn't have corn DNA in it anymore, my doctor says not to use it - all I know is he's allergic to something in it. We make homemade goat milk formula, kind of a hybrid btw Dr. Sear's recipe and the one in Nourishing Traditions. After exposure to standard formula he started colicking so bad he rejected both formula and breastmilk.

Have they given you an explanation for the abdominal distress? That seems really important to figure out first. I'd be more focused on what the gastro finds up myself. Our nutritionist kind of acted like g tubes are no big deal, just another way to feed a kid, and that is just not our feeling about it. It just seems to me figure out why your kid vomits all the time, and you will figure out why he isn't gaining weight. I just don't understand how forcing more food into him is going to help if he is vomitting. Anyway, I don't know if your situation is that dire, but my experience was that things were less dire and they were pushing tube feeding - it probably disturbed me more than it should, but it just bothered me that they acted so "no big deal" about something that we feel is a pretty major intervention.
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Old 04-17-2008, 08:47 PM
 
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Here is what happened to our son. He gained weight beautifully until about 9 mos. He went from the 60% to the 35% then to the 10% (at a year) then fell off the charts at 14 months. He was 9 kilos at 15 months. He would not eat anything by mouth or drink or breastfeed anymore. He still is not a good drinker yet, we are working on it. He was losing weight and he was not meeting his milestones. So, the ped GI put a NG tube in (in 4/06). He continued to lose weight and then a G-tube was placed in 6/06.

Also, we had never been to a PEd GI until this all started. I would have a good work up with one. He had testing done for celiac, all types of GI issues, an endoscopy, milk scan and swallowing study. The GI told us we really did not have an option as far as the tube. He needed it or he would waste away (in their opinion). He was losing weight (he lost almost a lb in 1 week).

He still has the tube to this day. He eats very little by mouth, we have worked with all types of therapists. He has a swallowing disorder, silent reflux, severe hypotonia and PDD-NOS. He was diagnosed with the silent reflux wehn the NG tube was being placed. He was diagnosed with dysphagia 1/07.

Best wishes to you. You can PM me if you want.

Take care!
Jen

Jen, mama to  (M-13, N- 10, C- 8 rainbow1284.gif J- 3.5, and rainbow1284.gifJ -2, angel3.gifA (10/4/07) and 3 early losses)
We are expecting baby #7 in November 2013

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Old 04-17-2008, 09:27 PM
 
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Well I know that all GI doctors are different but ours would not do an NG/G-tube if there was a possible reason for the lack of weight gain (vomiting/diarrhea) that could be corrected. However I'm sure you guys have tried to correct the problem and haven't had luck. With my son when the discussion came up we were first going to try fortifying his feeds to 30kcal/oz and adding in a lot of high calorie solid foods like avocado (he didn't take to the solids). The discussion only came up because he started losing weight. He had been holding his own for 4-6mos which they were fine with but once he started losing they said he needed a tube (we did manage to avoid it still but not with his GI's blessing).

My actual tube fed kid was tube fed from the get go because of her prematurity and she just never got the hang of the eating thing and whenever you have a trached kiddo (especially one on the ventilator) it's pretty hard/can be dangerous to have them eating orally.
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Old 04-17-2008, 09:46 PM
 
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Grace's tube was placed when she was a month old (way before we came into the picture) when her bmom was also being gently told that she should actually give her up (which she should have). Even with the tube feeding, though, Grace continued to have very slow growth (she was 16 pounds at 22 months, when she came to us). This is, they say, because of the GERD. She was pretty much throwing up EVERYTHING until this January when we had her nissen fundo.

Now, I'm not sure that the decision to place the tube would have been made (I suspect the doctors just told bmom that it was GOING to happen, knowing how things were back then) if she'd been with us at that point, but I do know that it has had both good effects and ill. At this time, because of her jaw repair, she is anatomically able to swallow. However, because the connection between mouth and food was never made, we are really having a hard time getting her to feed orally - at all. Like zero, zip. The good, of course, is that she has finally begun to gain weight. At 34 months now, she just hit 26 pounds, and I'm silly excited, and that definitely would not have happened w/o the tube.

All that said, I would make absolutely sure that the issue is not one of malabsorbtion, treatable GERD, or other GI stuff, before allowing one to be placed. I'm sorry that I don't know more about your DS's condition. Is there a diagnosis that you've been given that would explain this or is it just out of the blue? What tests have been performed? What medications have been used?

Finally, Elecare just causes very loose stools. I've been told not to be alarmed about that as long as I keep Grace hydrated.

Hope something in my ramblings helps.

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
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Old 04-18-2008, 12:31 AM
 
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Well, we've avoided the tube so far, but it's a constant struggle. I suspect that if I were to call the dr today and say "let's do the tube" they'd schedule him with very little hesitation.

At birth Connor seemed "off", he wasn't rooting, wasn't sucking, wouldn't latch, did a lot of choking...when he finally did start breastfeeding (which required me squirting milk into his mouth) he was gasping and gulping, getting out of breath, making a weird "clicking" noise, and started refluxing through his nose (both with swallow and with spit-up). At 4 weeks old he was admitted to the hospital with failure to thrive for not being back to birth weight yet.

A swallow study a few days later showed severe dysphagia, uncoordinated suck/swallow, aspiration of thin liquids, and significant nasopharyngeal backflow of thin and nectar thick liquids. A tube was recommended that day.

Confused, scared, and completely caught off guard I started information gathering and discovered that aspirating breastmilk wasn't quite the emergent issue aspirating formula was, and that the fact he was so far healthy (as in no acute illnesses) was a good sign. So we modified all his activities...feeding fully upright (him sitting straddling my leg, tummy to tummy with his neck extended), I pumped off my foremlk to give him only high-calorie hind milk, we never laid him flat on his back (not even for a diaper change, he became a tummy sleeper that day, I cut all dairy from my diet (including casein and whey...kellymom has a great list of hidden dairies), and I took him to every lactation consultant in the area (I even emailed Catherine Watson-Genna who specializes in infant feeding issues)

Subsequent tests have shown that he still aspirates occassionally, but he's had only one true pneumonia. His weight picked up for a while, but now is a concern again (within a pound since October/November timeframe). I had to cut soy out of my diet, too, which in my opinion was much harder than dairy (and cutting soy in conjunction with dairy was nearly impossible!!!)

He has an immune deficiency, so is sick often, plus palatal dysfunction which still causes problems with eating, plus oral motor issues which make sucking problematic sometimes. OH yeah, and he had 5 frenulums attaching his upper lip to his gum line...they were surgically released in February, but three have grown back...grr...

So wow...putting it all down in writing like this makes it sound pretty bad. And it is a struggle for sure, but we're making it so far. LOTS of work, lots of research, I've had to stand up to many a dr and say something along the lines of "no, we are NOT supplementing with any kind of formula, please tell me what our other options are" I was a pumping finatic for months (at one point had almost 200 ounces in the freezer).

He's making progress, we've learned to adapt, we know what signs to look for that are concerning. I don't know why he isn't gaining recently, he's had several back to back upper respiratory infections which may be just enough to stop the growth, and he's working hard on pulling to standing and doing lots of crawling, so I guess he could just be spending more calories. I need to get him in to be weighed soon...there's also sometimes a human growth hormone deficiency in kids with his syndrome, so we're having that looked into.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 04-18-2008, 09:17 AM
 
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My son had an OG for the month he was in the NICU. He was tube free for four months after that. During that time I EPed, hired every lactation consultant in the phone book and that I could find through word of mouth, and took him to two different feeding clinics to try to get him eating well orally. He was choking and turning blue during feedings and taking a long time to eat. His suck was terrible and he had nasal flaring.

Have you tried a Haberman bottle? That is the one thing that was of any help to us. To this day it is the only bottle he can take without consistently coughing and choking and it is easier so he takes more as well.

At five months my ds was taking less than 5oz a day total. He had another aspiration pneumonia and was in the hospital. They declared that they couldn't let him starve to death while he was inpatient. NG tube feeding were started his third day in the hospital and we went home after two weeks with an NG and had g tube surgery several months later.

We should have been tube feeding him before then. His development was very much effected. It took several months of good nutrition to start back on the right track. He wasn't able to pick up his head while on his belly until eight months and he didn't roll over until he was 10 months old. He was walking at 17 months though, so things started moving along once his nutritional status improved.

My oldest was schedule for gtube surgery when she was five. She was 22lbs and losing weight on a two thousand calorie per day diet. I didn't feel that the tube was the answer we needed, I wanted to know WHY she was losing weight, not just pump her full of formula.

We switched gastros and found one that actually cared and did testing. She doesn't produce pancreatic enzymes and therefore can't digest her food. The doctor started her on oral enzymes with food and she started growing! She is almost 10, over 40lbs and hasn't lost weight, though her gain is still slow, since she got a proper diagnosis.
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Old 04-18-2008, 05:39 PM
 
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We started talking about an NG tube initially because I couldn't get dd to take her meds and to increase her weight. She was breastfeeding and experimenting with solids, but her underlying kidney disease affected her appetite and ability to gain weight. Honestly, I was all for the tube, even though I was worried it might impact our nursing relationship.

I don't think there's any shame in admitting that your child needs help to eat. Yes, it feels, to some degree, like failure. But having a child who is not dehydrated all the time, or lacking energy, or one about whom you are constantly stressing about every.single.thing that enters their mouth -- to me, that is worth it.

What I wish is that we had put the g-tube in first, rather than mess around with an NG. For some people (when the feeding issue is short-term), the NG is a perfectly good solution. Dd's feeding concerns were long-term, though. She's had her G-tube for about 5 1/2 years and will likely have it removed sometime this fall. She hasn't used it for nutrition in over a year -- it's now just used for meds and some supplemental fluid. In fact, we're now getting ready to enroll her in the feeding clinic -- because she's gained TOO MUCH weight. Oh, the irony!
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Old 04-18-2008, 06:05 PM
 
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Linden's been tube fed for most of his life due to aspiration and severe dysphagia. So we didn't have a choice. But what they'll probably do before the G tube is a trail with an NG to see if he improves a lot with it. Then, if they see a change, they'd schedule surgery. So you will have as much time as you need to adjust with the NG before commiting to surgery (well, as long as the NG is working for you). I know of a few people who just stuck with the NG for more than a year. personally, I don't mind the g-tube and think it's less of a pain in the butt. I think it all depends on how long they think he'll need it. Tube feeding seems daunting at first, but it really does become normal eventually.
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Old 04-18-2008, 10:18 PM - Thread Starter
 
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Thanks for your replies, mamas! This is exactly what I was looking for. The main thing I'm gathering here is that *most* gastros don't push tube feeds until there's weight loss and/or significant developmental delays (in the absence of structural issues).

I apologize for the unattributed quotes- I haven't figured out how to multiquote.
Quote:
Have they given you an explanation for the abdominal distress? That seems really important to figure out first. I'd be more focused on what the gastro finds up myself.
We are investigating, and have had a pretty extensive GI workup, including bloodwork, stool, and urine. I know all his chems came back ok, liver and pancreatic function are ok, but his IgA has dropped (part of the celiac panel, which is not c complete). He's had a swallow study and upper GI, the only thing of note was moderate to severe nasopharyngeal reflux on the upper GI. He rarely refluxes during or just after feeding; he typically vomits a few hours after eating. And he vomits far more when he's sitting upright than when he's lying flat.

Quote:
Here is what happened to our son. He gained weight beautifully until about 9 mos. He went from the 60% to the 35% then to the 10% (at a year) then fell off the charts at 14 months.
Yeah, that's what's happening here. He was in the 50th (or higher) percentile for term babies until 7 months, when he started slowing. He's now in the 5th percentile at 9 months (just found out today he's lost 6 oz in 2 weeks).

Quote:
he was pretty much throwing up EVERYTHING until this January when we had her nissen fundo.
Our other specialists are expecting this to all end with a Nissen. But since he's also having so much diarrhea, we are treading carefully there. I'd hate to get the Nissen and find out it doesn't correct the issues.
Quote:
All that said, I would make absolutely sure that the issue is not one of malabsorbtion, treatable GERD, or other GI stuff, before allowing one to be placed. I'm sorry that I don't know more about your DS's condition. Is there a diagnosis that you've been given that would explain this or is it just out of the blue? What tests have been performed? What medications have been used?
Right, that's what we're trying to do. I am very concerned now that he's losing, as his intake jumped up to 24-27 oz in the last 2 days, and no stools. *Still* he's losing. He has an immune deficiency- the jury is still out on whether it's transient or a true PID- but his labs are starting to worsen. The immunologist thinks there's an underlying GI issue causing him to get repeated infections, but the gastro thinks it's a PID and an as-yet-unidentified GI problem combined. He's taking axid, was on prevacid before they d/c'd the granules, and I honestly don't think the PPI does much for him. We have a script for Reglan that we were asked not to start until after the GI testing was done. GI also is considering severe food allergy, and I'm on an elimination diet since he's getting 75% EBM, 25% Elecare now.

Quote:
He has an immune deficiency, so is sick often, plus palatal dysfunction which still causes problems with eating, plus oral motor issues which make sucking problematic sometimes. OH yeah, and he had 5 frenulums attaching his upper lip to his gum line...
L was tongue-tied and never learned to nurse (and I tried daily for six months, still give it a go now and then). He also has a huge frenulum on his upper lip, between his two front teeth (which are extremely far apart because of it). He leaks from the corners of his mouth while bottle feeding, always has, and he may have structural issues in his neck, as he has recurring torticollis and chronic inflammation of the lymph nodes on one side of his neck. I am getting the ST from EI to come look at his feeding, and I'm going to ask the ENT next week about his palate. Since he has backflow into his eustacian tubes as well, it makes me wonder where the milk is pooling, KWIM?

Quote:
My son had an OG for the month he was in the NICU. He was tube free for four months after that. During that time I EPed, hired every lactation consultant in the phone book and that I could find through word of mouth, and took him to two different feeding clinics to try to get him eating well orally. He was choking and turning blue during feedings and taking a long time to eat. His suck was terrible and he had nasal flaring.

Have you tried a Haberman bottle? That is the one thing that was of any help to us. To this day it is the only bottle he can take without consistently coughing and choking and it is easier so he takes more as well.
Mine was only in the NICU for 15 days, but I think the OG (then NG) were a big factor in his inability to nurse. I also have flat nipples and he had pretty bad jaundice, so he just was pooped all the time. The neos didn't want to take out his tube, but since I am a former PICU nurse, they agreed to send him home with it, as long as we trialed overnight without it. He'd never wanted to nipple his feeds til they took away easy method. He's always been a very low-volume eater, which I honestly never noticed- all my experience with babies is as a nurse, and those kids were all sick, premature, or both. 2-3 oz a feed seemed right to me! We've never tried a haberman, but I am going to look into different bottles and nipples if we stay on the elecare, as he aspirates it with some regularity. He will sometimes guzzle 4 oz at a sitting if he's been super active or just woke up, but it's rare.

Quote:
I don't think there's any shame in admitting that your child needs help to eat. Yes, it feels, to some degree, like failure. But having a child who is not dehydrated all the time, or lacking energy, or one about whom you are constantly stressing about every.single.thing that enters their mouth -- to me, that is worth it.
ITA with you, although it makes me feel horrible to see him losing weight on mostly my EBM. But he's simply not progressing much in PT, and I'm noticing his fine motor skills are starting to suffer as well. The constant vomiting is (we think) causing fluid buildup in his ears, and he's already suffered a partial hearing loss in one ear. I also worry about the NG/OG, as he was such a crappy nipple feeder with it the first time.

I really appreciate all the feedback. I am rather anxious now to see what his weight looks like at the gastro appt next week- I really hope we find our answers in his lab results. I'll keep you all posted- he now has a staph infection on his penis and urethra (yow!!), but his appetite seems better than it's been in 6 weeks.
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Old 04-19-2008, 12:17 PM
 
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just one thing sticks in my mind regarding the feeding issues - you say that he has a large fendulum and wide space between his front teeth. My question is has he been checked for a sub-mucus cleft palate, i would think they would have looked for this but Megan was a year old and had been seen a number of times (and tests) and they still missed this - we where told she had a high "bubble" palate when in reallity there is a large peice of the hard palate missing(cleft) but it is covered by a membrane making it a submucus cleft. This can have far reaching problems as far as feeding as there are commonly issues well beyound the mouth and reflux is very very common. The diareaha could be an allergy/celiacs. Have they tested for c-difficile infection thats the other thing that comes to mind.

My DD was also a low volume eater - 3-4 oz max at a time at 6-10 months and we had to push to get 24oz a day in her. Now at two with the reflux relativly under control (it was allergy related) and her doing better with the bottle she will drink 8 oz of water at a time. But she is still a low volume drinker of milk or other high nutrient drink.
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Old 04-19-2008, 04:04 PM - Thread Starter
 
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Originally Posted by momtoalexsarah View Post
just one thing sticks in my mind regarding the feeding issues - you say that he has a large fendulum and wide space between his front teeth. My question is has he been checked for a sub-mucus cleft palate, i would think they would have looked for this but Megan was a year old and had been seen a number of times (and tests) and they still missed this - we where told she had a high "bubble" palate when in reallity there is a large peice of the hard palate missing(cleft) but it is covered by a membrane making it a submucus cleft. This can have far reaching problems as far as feeding as there are commonly issues well beyound the mouth and reflux is very very common. The diareaha could be an allergy/celiacs. Have they tested for c-difficile infection thats the other thing that comes to mind.
Thanks for mentioning the palate issue! I looked closely at it today, and the space between his middle top incisors is larger than the teeth themselves. I will definitely mention this to the ENT Wendesday. She looked at his adenoids, but I don't think she did a close assessment of his palate. Would the ST from Early Intervention be able to detect that?

He did have a c diff test on his stool, as well as a full ova and parasite panel- not all the results are back, but c diff was negative.

Thanks again!
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Old 04-20-2008, 05:36 PM
 
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Just wanted to send hugs and encouragement. It's a hard decision, but when you know, you just know.

Nitara had her NG tube placed at 3 months old. She was not eating nearly enough and was a very unhappy GERD baby. She got her Gtube a few months later. It took about 3 years to sort out what all was going on with her, and the tube was a really great decision for her. She started to do better developmentally and growth-wise once she got her tube.

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