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Old 02-27-2013, 08:06 PM   #1
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Sorry if this is the wrong forum...
You can search my old threads. Synopsis: full term baby. 6lbs 7 oz. failure to gain any weight by 6 weeks. Discovered she can't suck so she wasn't eating enough. Has seizures and low muscle tone. No official diagnosis. Just discovered she is allergic to gluten and discovered she is allergic to gluten and dairy. Cut out gluten and within weeks she was rolling sitting and cooing.

Go to gi today and I was so excited bc she is 13 lbs (at eight months) but she has fallen off HER curve(never was on the real curve but was on her own)

Here's what worries me.... For the last 2-3 months she randomly just won't eat for days. Like 12-15 ounces a day instead of 25-30. She isn't fussy just won't eat any more than that for 3-5 days then back to normal for a few days.
Can't feed her in her sleep. She gags and pukes with solids/purees except mums and puffs.
The dr said we either have to get more calories in her or more milk(I pump for her and use milk from a friend)....I already give her bottles with the cream off several bottles(freeze the skim part) I don't know what else to do. She LOOKS healthy. She is happy. But for the fourth day in a row today she only took 13-15 ounces. I tried to sneak another bottle in when she fell asleep and she pushed it away screamed and went back to sleep. I can't force her to swallow
Kind of freaking out. What do I do??????
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Old 02-27-2013, 08:24 PM   #2
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Re: HELP dd may be headed for a feeding tube:(

My 3rd dd also had trouble gaining weight. I pumped and fortified the milk with formula (powder) and something else. I was given a recipe from the NICU and I can't remember exactly what it was, but breast milk plus formula bumped up her calories from 20 cal/oz (estimate for breast milk) to 27 cal./oz. For a while I had something else to add, which made the breast milk up to 30 cal/oz. She was only 18 pounds at 24 mos., but now is a hefty 43 lbs. at 5 1/2 yrs. Hang in there. If she does need a feeding tube (we had gastric lavage feeds several times for a few weeks each time), don't worry too much about it. Just know you're doing the best for your baby, even if the best involves medical intervention. The most important thing is to get her to grow until she has the ability, stamina, etc. to keep herself going.

Good luck.
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Old 02-27-2013, 08:25 PM   #3
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Oh mama I'm so sorry :-(

If she is healthy, alert, meeting milestones, peeing and pooping sufficiently I would really push to avoid a feeding tube. An ng tube can make it really tough for lo's who already struggle to suck and swallow and are prone to gagging. I know there are many other mamas in the SN section who are very knowledgable on this topic.
I truly hope that things begin to improve ASAP! It may just be a "phase" she's going through also... 13lbs at 8 months sounds pretty okay to me but obviously every child is different. Maybe look into early intervention/your 0-3 program there. Many have great feeding programs where nutritionists and occupational therapists come out to assist you with your Lo's eating etc.
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Old 02-27-2013, 08:31 PM   #4
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Re: HELP dd may be headed for a feeding tube:(

yeah they mentioned formula but im VERY hesitant bc she already has allergies and id hate to expose her to soy and other possible allergens she has reflux. it was really bad but is practically under control with meds. she doesnt arch and scream(much) anymore and rarely spits up since i cut gluten from our diets. she has regular wet/dirty diapers EXCEPT when she goes several days not eating much and then they are few and she sleeps a TON the ped said if she didnt take 18oz a day for ONE day to take her to children's to the ER. the GI said not to, just to watch her and if she was doing it for multiple days to call back for an appointment BUT you cant get anyone on the phone and appointments are 2 weeks out, even if the ped calls. im just freaking out a bit my baby needs an instruction manual and she isnt even my first.
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Old 02-27-2013, 08:36 PM   #5
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Re: HELP dd may be headed for a feeding tube:(

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Originally Posted by looking8186 View Post
Oh mama I'm so sorry :-(

If she is healthy, alert, meeting milestones, peeing and pooping sufficiently I would really push to avoid a feeding tube. An ng tube can make it really tough for lo's who already struggle to suck and swallow and are prone to gagging. I know there are many other mamas in the SN section who are very knowledgable on this topic.
I truly hope that things begin to improve ASAP! It may just be a "phase" she's going through also... 13lbs at 8 months sounds pretty okay to me but obviously every child is different. Maybe look into early intervention/your 0-3 program there. Many have great feeding programs where nutritionists and occupational therapists come out to assist you with your Lo's eating etc.
agreed. I would get a second opinion. I would not agree to tube feeding is baby did that well and is just "off the curve."

my 1st child was a peanut. weight maybe 16-18lbs at 16 months old. she wore a size 2 shoe at 18 months. and shes still petite at 16 yrs now.
she was exclusively breastfed and i always thought it was me. the other kids gained well even w same feedings BUT its just her body. tiny tiny. shes 5'2 and 110lbs. my other 2 kids are 5'5" and 6'2" and they are younger than her.
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Old 02-27-2013, 08:39 PM   #6
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Re: HELP dd may be headed for a feeding tube:(

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yeah they mentioned formula but im VERY hesitant bc she already has allergies and id hate to expose her to soy and other possible allergens she has reflux. it was really bad but is practically under control with meds. she doesnt arch and scream(much) anymore and rarely spits up since i cut gluten from our diets. she has regular wet/dirty diapers EXCEPT when she goes several days not eating much and then they are few and she sleeps a TON the ped said if she didnt take 18oz a day for ONE day to take her to children's to the ER. the GI said not to, just to watch her and if she was doing it for multiple days to call back for an appointment BUT you cant get anyone on the phone and appointments are 2 weeks out, even if the ped calls. im just freaking out a bit my baby needs an instruction manual and she isnt even my first.
if the GI doc isnt agreeing with first dr then find a new dr and then also look into a midwife or natural type dr since you are breastfeeding and wish to keep doing so. the seizures could be from low blood sugar too. my 2nd daughter had that and Im the one who figured it out. the dr's tested and tested and I kept saying she eats like a horse, check her sugar levels- they are all over the place. yep, if she doesnt eat well, she seizes. perhaps when your baby is too low, she become lethargic and not hungry and then seizes??
look up hypoglycemia
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Old 02-27-2013, 08:45 PM   #7
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Re: HELP dd may be headed for a feeding tube:(

I don't know what for you to do, but you are in the right to be seeking opinions and suggestions from ppl who have been there. Keep questioning and seeking until you get the solution, which may be that she is just fine. Go with your instincts and try to use as many natural non invasive remedies as possible, work with her body and cues. She may just be small and mighty! Good luck!
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Old 02-27-2013, 09:05 PM   #8
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Re: HELP dd may be headed for a feeding tube:(

Mama--the feeding tube is your friend. It keeps your baby safe, and calories/fats in=brain development. Its not hard to learn to use, and can be a godsend a lot of the time. Plus, you'll never have to give oral meds again. All meds can go through the tube...

Elecare is magic. It is one of the most hypoallergenic medical formulas. There are also others. DS was on it for 2 years, and he went from FTT to now 50% on the charts with his G tube and Elecare. He graduated to Peptamin Jr about age 2, which is also hypoallergenic, but is ready to feed and tastes better. He at almost 4 is now drinking 32 ounces a day orally, and rarely uses his tube unless he is sick. But, you have to have enough fluids or its really hard on your kidneys.

Seriously, don't be afraid of the tube. Demand a G tube, not an NG. It is your friend and your security blanket. They are easy to put in, and easy to take out. Putting it in is a 15 minute surgery. Taking it out doesn't even require surgery. You pull it out and it starts healing on its own in about an hour. I would not resist it if the doctor wants to do it. You can always have it there and not use it. But, on a bad day, it is great to be able to put 6 or 8 ounces extra in while kiddo is sleeping.

You won't regret doing a tube. I promise. Keep pushing oral feeds as much as possible, but you are at a huge brain development point, and you need to make sure baby is getting all the nutrition he needs.

Also, ask for a referral to a developmental pediatrician. IMO, GI docs are worthless. We've been through several. Developmental Peds look at the whole picture, not just the typical stuff, and are often the case managers of several specialties. We actually don't even see our GI very much now. Developmental manages all DS's tube feeds, feeding team, reflux, etc. Some hospitals call them Complex care docs, but most just call them developmental.

Another good resource is Kennedy Krieger Institute, and inpatient feeding program. There are many inpatient programs out there that range from 6 weeks to 6 months in length, but KKI is one of the best. http://www.kennedykrieger.org/
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Old 02-27-2013, 09:35 PM   #9
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Re: HELP dd may be headed for a feeding tube:(

Quote:
Originally Posted by luvsviola View Post
Mama--the feeding tube is your friend. It keeps your baby safe, and calories/fats in=brain development. Its not hard to learn to use, and can be a godsend a lot of the time. Plus, you'll never have to give oral meds again. All meds can go through the tube...

Elecare is magic. It is one of the most hypoallergenic medical formulas. There are also others. DS was on it for 2 years, and he went from FTT to now 50% on the charts with his G tube and Elecare. He graduated to Peptamin Jr about age 2, which is also hypoallergenic, but is ready to feed and tastes better. He at almost 4 is now drinking 32 ounces a day orally, and rarely uses his tube unless he is sick. But, you have to have enough fluids or its really hard on your kidneys.

Seriously, don't be afraid of the tube. Demand a G tube, not an NG. It is your friend and your security blanket. They are easy to put in, and easy to take out. Putting it in is a 15 minute surgery. Taking it out doesn't even require surgery. You pull it out and it starts healing on its own in about an hour. I would not resist it if the doctor wants to do it. You can always have it there and not use it. But, on a bad day, it is great to be able to put 6 or 8 ounces extra in while kiddo is sleeping.

You won't regret doing a tube. I promise. Keep pushing oral feeds as much as possible, but you are at a huge brain development point, and you need to make sure baby is getting all the nutrition he needs.

Also, ask for a referral to a developmental pediatrician. IMO, GI docs are worthless. We've been through several. Developmental Peds look at the whole picture, not just the typical stuff, and are often the case managers of several specialties. We actually don't even see our GI very much now. Developmental manages all DS's tube feeds, feeding team, reflux, etc. Some hospitals call them Complex care docs, but most just call them developmental.

Another good resource is Kennedy Krieger Institute, and inpatient feeding program. There are many inpatient programs out there that range from 6 weeks to 6 months in length, but KKI is one of the best. http://www.kennedykrieger.org/
im TERRIFIED. terrified. terrified. terrified. now, i didnt finish pre-med and i know i would but im convinced i would puncture major organs yup im a moron. im not sure i could do it.
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Old 02-27-2013, 09:43 PM   #10
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Re: HELP dd may be headed for a feeding tube:(

What's her overall percentile for weight?
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