[cookie cutter cowboys]

Hi all. I'm new to this board, but very excited to find a place where there are others who may understand what I'm going through with my youngest son (20 months).

Some history on Ace - he was 7 lb 8 oz at birth (full term no pregnancy or delivery problems). Gained 2 lbs a month on breast milk. I stopped nursing when he was 3 months old and he went down hill from there.
He is just now 20 lbs 7.5 oz and still no sign as to why he is FTT.

He does not like to eat - if he takes a couple of bits it is a big deal for us.

I'm real interested in hearing from other moms who have dealt with this and what their drs have said and done.
So for Ace has had 5 blood workups, 2 stool cultures, sweat test, MRI, Upper GI, Ph Study, and there probably has been more but it excapes me at the moment.

The first diagnoses was acid reflux - treatment for 6 months - no help.
Out of 3 blood tests 2 showed low thyroid and last 1 normal.
Out of the Celiac test (another blood test) IGA, IGE normal, IGG out of range - specialist said no way is it Celiac (for those who haven't heard of this - it is an intolerance to wheat products).

Long story short we are being admitted to Children's Mercy this month and they want to do an EGD - this is where they put a scope down into the esophagus, stomach, and part of the upper inteston to look for inflamation and such - they will they take stuff to biopsy as they remove the scpoe.
Also they will hospitalize him (I was told to plan for 5 days) to put a feeding tube in and see how much food we can get in him and if he gains weight this way - if he is gaining wieght this way I was told he will come home with a tube and I will have to learn how to take it in and out
He will also be seen by a neouologist and endocrin specialist while we are there.

Anyhow would love to hear from others - thanks for listening to me.

Maria

[SadieCass]

First off, welcome!

Ace sounds like my Molly. She's refusing just about everything anymore. I get excited when, over the course of the day, she eats a full slice of pumpkin bread. Her first bout of FTT she was diagnosed with reflux. We treated that and she bounced back pretty quick. She remained on the small side, but growing, so we dropped the weight issue for a while. The ped we were with then wasn't concerned (so glad we aren't with him anymore). Then at a year she started slowing down, until she just stopped again. She's now 17mo. and 17pounds. My new ped (whom I love) is really wanting to move quickly to get her checked out. We haven't been through any testing yet. We know she's allergic to dairy, which slowed her initial food intake as we adjusted, but we still don't know what's going on with her. We go to the specialist next week to begin testing. It's going to be nervewracking, but we're anxious to get her going before she falls behind more.

They did a EGD and a colonoscopy both on my son when he was about a year and a half/two years old (for a totally different reason than FTT). It was difficult to go through, only because they didn't warn me that putting them under the anesthetic causes them to shudder and cry out, so I thought he was in pain...when he was just going under. Be prepared for that and you should be all right.

Good luck and welcome to the boards! I've found it a great place to vent and find others in similar situations...or at least who really understand and don't ply you with, "Well, my child hardly ate a thing..." (which I get from my mother and her friends...).

Sadie

[Lisa N]

Hi, welcome! As much as I hate to see new faces it's great to see that with have other people to compare notes with. My son Brandon just turned a year last week and has been having trouble gaining weight since 6 months. His last two doctors have now said, after all the testing, that they don't think anything is wrong with him and he's just small. I'm still having a hard time getting him to eat nearly anything most days.

If you would like to hear about more of what many of us have gone through with our kids, take some time to read through the old threads. You might read something that could help. The women here are great but sometimes this board is slow so don't feel like no one cares if no one replies right away.

[glasscandie]

Hi and welcome! Wow, it sure sounds like you've been through a lot! Huge ((hugs)) to you, it's such a stressful time when everything is still getting figured out. We had a year of severe FTT hell, which recently started looking up again.

My daughter is NG tube fed at night, and because she has a skin disorder, we insert the tube at night and take it out in the mornings when her feeds are done. We can't have something taped to her face all the time. I don't think that's very standard, most insurance companies only allow for 2-3 tubes a month, which you change about every week, so we had to petition ours.

If you do need any help with the NG, or just have concerns, please feel free to PM me. It can be really scary at first, I cried for the entire first week that we had to do it, and sobbed like a baby the very first time I saw it done. Now, though I can't say it doesn't bug me still, but everyone around here's gotten used to it (even Julia) and it's just another part of life. If you can request a pump (if you even end up doing the NG in the first place) try to get a Kangaroo Pet or a Zevex, they're the easiest to set up and start. Avoid with all costs the Ross Embrace - horrible, horrible piece of equiptment lol

A website I always give to anyone I hear who has a feeding tube or might be using one: www.parent-2-parent.org. Go to the Tube Feeding Issues forum. The women on there are fantastic, and come up with some great ideas sometimes, and always answer questions.

Not that I don't want you to stick around here, but so far as I know, I'm the only other tube-feeder on here (oh, actually there's another new member who's daughter has a g-tube, I think) and when you're dealing with tube feedings, you can never have too much support.

But, stick around! We have such a fantastic group of caring and intelligent moms on here!

[cookie cutter cowboys]

I will look into that - Thanks for all the advice!!

Did they ever diagnose why your DD was FTT?

Ace's pediatrician warned me today that we may never find a reason for it. But he really feels that once on the feeding tube for awhile his body may start to crave food.

Best of luck to everyone dealing with this!

Thanks again Maria

[Admin-pattyandthemoos]

Hi Maria, welcome to the board. Sorry I am so late responding. My son had FTT and they did not find a disorder that caused his problems really. We had all the same tests that you had and most of his feeding issues were related to his low muscle tone and sensory issues. He had dysphagia (difficulties with swallowing). We had to thicken his liquids for a long time. He still has problems with choking with certain foods so I try to watch him.

For us what helped was going to a feeding clinic. I would see if your doctor could refer you to a feeding clinic. You will work with an occupational therapist on getting your child to eat better. It made a big difference with my son. He also was on pediasure for over a year. Now he is doing really well but still is a VERY picky eater. There are many foods that he has never eaten. He has just recently been diagnosed with an autism spectrum disorder so I believe, for him, sensory issues were a lot of the problem.

Keep us posted on what you find out.

[glasscandie]

Not sure if you were asking me or not, but I'll answer anyway lol

My daughter has a rare genetic skin disorder called Netherton's Syndrome, which was the reason why she was FTT - she was diagnosed at 5 months old by DNA testing. With NS, her skin is thinner than an unaffected person's, so she loses a lot of proteins through her skin, her body burns a lot of calories keeping her temperature stable, and also uses a lot of calories to make NEW skin (the very top layer of her skin sheds every morning, looks almost like when you have a sunburn...once we give her a bath, her skin looks "normal" but a bit more red).

From what I've read, a lot of kids with FTT go undiagnosed. Failure to thrive is just so vague and can be anything really, at all, that while the doctors search for the source, they're also concentrating on treating the symptoms - whether it be by a high-calorie formula, high-calorie solids, or some type of feeding tube. When Jules was admitted to the hospital in November (the reason being to figure out why her skin was acting so "weird" and to figure out why she wouldn't gain weight) the doctor specifically said that they might *never* find an exact diagnosis (I remember that specifically, because I was so bitter she had to be admitted in the first place, and wanted to smack the doc b/c I couldn't figure out WHY we were admitting her if they weren't going to figure anything out! lol), and that happened frequently.

I've heard great a many success stories with even temporary (like, 2-3 months) NG feeds (particularly at night, because the stomach is more relaxed while they're sleeping, so they can take in more calories...also you can add whatever you need to the NG formula, like protein or even make the formula concentrated to 30 cals/oz without them ever tasting it), and Jules is my own personal success story I don't even want to think about where we'd be now if we didn't do the NG feeds. But like I said, any questions, post em here or shoot me a PM! I'll help you out as best as I can, and research anything I don't know!