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Old 01-06-2013, 02:23 PM   #11
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Re: Failure to Thrive

Are you using a Amino acid-based formula to up his calories? Kids can have intolerance and allergies to all sorts of formulas so you need the least likely to cause a reaction. Babies metabolize medication very quickly so you will often see better results by splitting the daily PPI dose in 2 and giving every 12 hours or giving a PPI and another type of acid blocker like Zantac.

If he is in pain then you definitely need to address this with the GI because if a baby starts recognizing eating equals pain you could be in for massive feeding issues. That is most definitely not a road you want to go down if you can avoid it because it can take years of therapy before a child improves and sometimes not even then. If the GI isn't taking the pain seriously then you need to make him take it seriously.

Have they done a swallow study to make sure he is swallowing efficiently? I would wait until you get the upper endoscopy biopsy results and if nothing shows up to explain his issues then you can discuss with GI if you need to branch out and have an endocrinologist evaluation.

ETA: Just read 2nd post, you may want to try a probiotic to help give his immune system and digestive system a bit of a boost. It won't solve his problems but every little bit helps.

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Old 01-06-2013, 02:56 PM   #12
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Re: Failure to Thrive

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I would think that the pharmacy there would be doing it correctly but ours didn't. The prevacid needs to be disolved in a bicarb solution for the best continuity of dosing and ours was using sterile water. This meant that her medication only lasted 15 days and that she was not always getting the appropriate dose. Also, prevacid is supposed to be dosed 30 minutes before eating. The doctor explained that it needed to be in their system. Poppy was a whole new kids on once per day 30 minutes before eating. I think the scope is certainly worth considering so that you can see if there are eosinophils present that indicate an allergy. Are they planning to do the PH monitor too?
It is dissolved in bicarb. He gets the dose first thing in the morning and again right before bed. They've never said anything about doing it at a certain time in relation to eating. In the morning he used to get it after his first nursing session, now he gets it either right before or after his first bottle.

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On my phone but will write more later. DS stopped taking a bottle at 4 months. He got an NG which was awful, and then at 7 months, we begged for a G tube. It is super easy once you get the routine down. We are now at only 8 oz in the tube and 25 oz drunk orally, down from 32 oz in the tube and nothing orally at 18 months. It is all aversion--he has no physical issues.

If you saw him now at 3.5, you'd never know he had a tube. He's 36 pounds!

Get a good developmental ped, a good nutritionist, a good OT, and you should see some progress. I've found Taft out dev. Ped was more effective than our GI at managing DS's reflux.

If he has eczema, have you tried a hypoallergenic formula to see if it is being caused by a sensitivity?
I thought of your son with all this. I'm really hoping we won't have to go the feeding tube route. I don't think we're quite to that level of severity, but if he keeps not gaining, who knows.

He was in the 25-50th% for birth weight, then has slowly dropped percentiles every month until now he is in the 3rd.

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Originally Posted by mekat View Post
Are you using a Amino acid-based formula to up his calories? Kids can have intolerance and allergies to all sorts of formulas so you need the least likely to cause a reaction. Babies metabolize medication very quickly so you will often see better results by splitting the daily PPI dose in 2 and giving every 12 hours or giving a PPI and another type of acid blocker like Zantac.

If he is in pain then you definitely need to address this with the GI because if a baby starts recognizing eating equals pain you could be in for massive feeding issues. That is most definitely not a road you want to go down if you can avoid it because it can take years of therapy before a child improves and sometimes not even then. If the GI isn't taking the pain seriously then you need to make him take it seriously.

Have they done a swallow study to make sure he is swallowing efficiently? I would wait until you get the upper endoscopy biopsy results and if nothing shows up to explain his issues then you can discuss with GI if you need to branch out and have an endocrinologist evaluation.

ETA: Just read 2nd post, you may want to try a probiotic to help give his immune system and digestive system a bit of a boost. It won't solve his problems but every little bit helps.
Our dr. takes any pain he may be in very seriously, but he doesn't usually seem to be hurting, just doesn't like eating. It may be that it does hurt him, but he's so laid back that he doesn't show it. We aren't using an amino acid formula yet, but she said we will most likely switch to one after the scope. She was going to start with that, but I can't pump enough a day to keep up with him, so we are having to use freezer milk that I pumped while not on a dairy-free diet. She said to still use it though and therefore to just use Gentlease since the milk won't be dairy-free it wouldn't matter whether the formula was or not.

They have not done a swallow study, but swallowing hasn't seemed to be an issue.

Thankfully, because we are seeing a specialist at an awesome children's hospital, we can be referred within the hospital to other specialists very easily. That's how we ended up with this GI dr, we started by being seen by dermatology when he was hospitalized and were then referred for issues he was starting to have. He was on a probiotic for a couple months after his hospital stay.
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Old 01-06-2013, 03:05 PM   #13
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Re: Failure to Thrive

What about an SNS so you could supplement while nursing.
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Old 01-06-2013, 03:30 PM   #14
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Re: Failure to Thrive

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What about an SNS so you could supplement while nursing.
Quantity isn't the problem. I'm having to make the quantity he's getting have more calories now. I make formula using breastmilk instead of water essentially. I have an SNS, it just won't really help in this case because he will only consume so many ounces/feeding and I make plenty.
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Old 01-06-2013, 03:55 PM   #15
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My youngest was FTT and we finally got him on the chart with Elecare thickened with Simply Thick. He is still tiny but he eats & drinks plenty.

He had reactions to Soy, milk based, Alimentum, Nutramigen ~ any formula we gave him. We has a sweat test done (to rule out CF), Upper GI, swallow study, allergy tests both skin & blood. We never found out what the GI issues were but he has Dysphagia and was inhaling his formula. That's why we have to thicken it.

OP, I hope you can help your sweet baby.

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Old 01-06-2013, 04:23 PM   #16
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Re: Failure to Thrive

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Quantity isn't the problem. I'm having to make the quantity he's getting have more calories now. I make formula using breastmilk instead of water essentially. I have an SNS, it just won't really help in this case because he will only consume so many ounces/feeding and I make plenty.
An SNS should still help. He will get the breast milk from you at the same time as the formula in the SNS. Same as with a bottle. If he nurses better than he takes a bottle, then an SNS might be a better choice. I would try it.

ETA: I just read that you make the formula using breastmilk. What about making the formula in the sns with one and a half scoops per 2 oz of water? I did that when my dd was failure to thrive (doctor's orderes) and put that in the SNS and nursed at the same time.
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Old 01-06-2013, 04:26 PM   #17
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I find this interesting considering my dd is 8months 15lbs 1 oz and weighed just over 5 at birth. She hasn't gained this whole month but because she hasn't lost and she is so active dr didn't even seem fazed.
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Old 01-06-2013, 04:29 PM   #18
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It sounds like more is going on so I hope he eats more soon
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Old 01-06-2013, 04:34 PM   #19
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Re: Failure to Thrive

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ETA: I just read that you make the formula using breastmilk. What about making the formula in the sns with one and a half scoops per 2 oz of water? I did that when my dd was failure to thrive (doctor's orderes) and put that in the SNS and nursed at the same time.

Depends on the reason baby isn't taking enough by mouth if it is an artificial nipple aversion this is a great idea but if it is because of volume intolerance this is a horrible idea. It could go either way depending on the exact cause of him not consuming enough. If it is a volume intolerance then they need to do an emptying study to find out what is going on in his digestive track. Gracious there are so many wild cards in GI management.
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Old 01-06-2013, 04:38 PM   #20
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Re: Failure to Thrive

dd was 6lbs 5 oz at birth and is under 11lbs at 6.5 months. she WAS up to 11lbs but for 5 days straight last week refused to eat more than 12oz/day and its obvious she lost some weight. they threatened to tube her last week but i decided to wait it out and 2 days later she was eating 25oz/day again. im no help we have no answers either.
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