Hi, my daughter is 9 weeks old and has spent 3 of them in the hospital. She has been diagnosed as failure to thrive due to reflux. They are testing her for cysti fibrosis now and we are waiting for the results. Has anyone else had to have that done too :?:

Hi Julie and welcome! We've tried for the failure to thrive, but doctors are very reluctant to give that diagnosis to us. I certainly know from experience that a bad case of reflux goes along failure to thrive--If only our doctor would agree. We did the force feeding to get food in for a while, but Evan (age 24 months) has worsed since that and it no longer works. I've also questioned cystic fibrosis and cerebral palsy, but we're still waiting for Evan's genetic testing to be done. The doctors don't seem to be in much of a hurry. Their attitude is that knowing wouldn't change anything that we're already doing for him. But it sure would help us with the coping!!! If only we could get them to understand... :roll:

Hi Julie and welcome! Shae is now four and has been failure to thrive her whole life....acutally, I think she's technically too little now to even be failure to thrive...we need to put some weight on her so can graduate to failure to thrive :? .

She had a test for CF when she was about three months old...just b/c of the amount of mucous that came up when she'd puke. It came back negative thankfully.

Good luck with your results, please let us know how it goes!

Janette, your son still has problems at his age? I guess I have a long road ahead of me. I hope your doctor would give him more tests. It helps to rule out things. My daughter goes to Vanderbilt Children's Hospital and they are very aggressive in their treatments. So far she's had 3 swallow studies, an EKG, a chest x-ray, heart monitoring, an malabsorbtion test, and now the CF test. She does take her formula by mouth, but not enough to help her gain weight. Does your son take food by mouth? Thank you for writting back to me :D

Roni, thanks for this web site. It is such a relief to know that I'm not alone. Does Shae take food by mouth? Do you know of ways to encourage my daughter to eat more? Thank you :lol:

Yes, Julie. Evan eats by mouth. He has never been tube fed. He's just now starting to fight the toddler purees with chunks. I'm sure the people staring at us at Wendy's at lunch thought I'm the meanest mother in the world as I tried to force him to take his medication. He just screamed. Oh well...(sigh), at least he'll not throw up as much today since he's had his meds.

We've found that we really need to fight to get the doctors to order any tests (and to actually get the powers to be to get around to doing them.)

We've seen so much improvement since Christmas though, as he's now crawling. In March alone, he learned to pull to a stand and to cruise along the furniture. I've also learned that as the gross motor muscles strengthen, so will the the fine motor and hence the speech. Children have to learn to walk before they can learn to talk, (even if it's at 2 years or later.) As the gross motor muscles strengthen, the reflux often improves. I know we're all hoping for that for our kids!

No need to thank me. I can't help Shae at all with this disease and it makes me feel so useless that I need to try help someone :? .

No, she doesn't take anything by mouth. The absolute best way at this point to encourage her to eat more is to get her reflux under control with meds. Once the pain is controlled she will begin to become interested in food again. What meds is she on?

Roni, she's on Zantac (why is that mint flavored?), Neocate (which she tolerates well), Polycose (not tolerated well at all), and Poly Vi Sol (some what tolarated). Did Shae's situation cause stress in your marriage? I wonder if it did with others on this site? I feel like I'm going to explode. I just want her to gain weight and be happy. I don't feel like she's ever happy. Do you know if anyone in the group has used day care? I'm scared that they won't care for her the way she needs to be cared for. I just can't afford to not work either. I feel so helpless. :cry: Thanks for setting up this site. I thought I was alone until I found your site. Thank you, thank you, thank you.

Hi Julie,

Having a special needs child definitely can cause stress in one's marriage, but we decided right from the beginning that we would not let it drive us apart. Sometimes our fuses are a bit shorter than they would normally be, but we make sure that we apologize (sincerely!) and make up right away too.

My day has been one of feeling that I'm going to explode, too. From one antsy child who's stuck inside due to weather that's too cold to the other child having a bad reflux day--little eating and lots of vomitting.

About day care, I haven't been able to return to work yet, and my son just turned 2 years old. On top of the reflux, he also has global developmental delays affecting gross motor, fine motor and speech, so I too am scared that no one else will care for him the way he needs to be cared for. I just can't afford to not work either, but it's truly amazing that we're actually able to keep up with expenses on just half of the income! You'd be surprised how you can make ends meet when you really have to. If you do, however, decide to go back to work, there are lots of good home daycares out there. If you return to work, how old will your baby be?

Good luck with your decision. I know it's a big one and really does add stress. So far my boss has allowed me to extend my leaves until Evan is nearly 2 1/2. I just sent in another letter last week to ask them to extend it one more year due to the special needs of my child and all of the appointments, etc. Would your employer consider keeping the position open for you a bit longer?

Welcome Julie!

Trent is now a year old, but he also had the sodium chloride test for CF when he was 3 months old (in fact he had it done twice by the request of the doc). It came back negative. He also had malabsorption tests done and test for celiac disease and liver function.

Trent would never drink more than 2 oz as a small baby, and still will not drink over 4 oz now! Be glad your little one will take the bottle. At 8 wks, Trent quit taking the bottle and I had to start sleep feeding him. He is a year old now and still will only drink bottles while he is sleeping, and it takes over an hour to feed him 1 jar of puree baby food. Trent was dx with FTT at 2 months. He has now gained enough to be on the charts thanks to Pediasure. We started him on Pediasure when he was 9 months old and he gained 4 lbs in 2 months. He is also on Peractin to help increase his appetite, which works pretty well.

I have not been able to go back to work since Trent was born. If he would have been able to drink a bottle awake, I probably could have, but I was too scared that a daycare worker would not take the time to rock him to sleep and then feed him. Also, I don't think they would spend as long as I do working with him to eat solid food either. I didn't want to go back to work only to have him start losing weight and have to quit again. My employer has given me 2 years leave, so hopefully when he turns 2 I will be able to go back.

Good Luck! I'm sure the test will come back fine. FTT just goes right along with reflux, and a lot of times it is the only thing that will make doctors actually take a look and try to find what is wrong. The doc's would never dx Trent with silent reflux as long as he was gaining weight. He had to actually lose weight before they would order any test.
When doctors think they are the all-knowing God, it is hard to get them to listen to you. Just remember-you know you're child better than anyone. If a doctor will not listen to you, keep going back every day until they do.
But, it sounds like you've found some good ones if they are already doing such aggressive testing at his age.

Amy

Amy,

You said that FTT often occurs with reflux. What is FTT?

I'm sorry. FTT is failure to thrive. I just abbreviated it to keep from spelling it out.

Amy

I ditto what everyone else said. Yep, the marital stress is huge and the financial burden is enormous, I haven't been able to return to work either and have obviously given up the job I had at this point. Janette is right, somehow you just seem to make things work.

I would suggest that if the only med she is on for reflux is Zantac and she is still not wanting to eat, then be more aggressive with her meds. Get a PPI and motility med for her to try to control the reflux better. That should make her more comfortable and want to eat.