Does your preemie have..............

Chelle - posted on 02/04/2010 ( 8 moms have responded )

322

47

78

Any of the following things my son has? My son has asthma, GERD, tracheomalacia, bronchomalacia, and dysphagia. He is also allergic to milk, soy, and rice (that we know of but suspect more food allergies). Just wanting to get to know any other moms who deal with any or all of these!

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

8 Comments

View replies by

Chelle - posted on 02/19/2010

322

47

78

Just an update, they had my son allergy tested this week and he was NEGATIVE for eveything. they said he has an intolerance especially to milk and soy. So we can start giving him those things in moderation. i worry though b/c the milk and soy makes him have blood in his stool. So I am waiting to take him off Neocate til after GI signs off on it and what they think. BUt I think the Neocate has been good for my sons reflux too though. We'll see what they say next month. They are also debating on the diagnosis of my sons asthma. They think they may have overdiagnosed him and that it may just be linked to the reflux. They said that he is still at 70% to develop it though. This was all from teh allergist so I have yet to talk to his pulmonologist. BUt he sent a letter stating that about his asthma and GERD to his GI and pulmonologist.

Aliesha - posted on 02/18/2010

9

23

0

My preemie does have a milk alergy. He is still in the nicu & is on Ele-Care.

Chelle - posted on 02/14/2010

322

47

78

I kept my son upright almost all the time. It took him a little bit longer to roll over (not too much longer though) and things b/c we hardly gave him tummy time. If we did he would puke everywhere and it was just horrible. So he stayed in a swing or a bouncer or on my shoulder for most of the day. When sleeping we bought a little thing that you can kinda raise and lower yourself. He did great in that til he started to move in his sleep. We tried raising one side of his crib but he just ends up on the flat end of the crib. We also used cereal in his bottles to hold the food down. that seemed to help for about 2 months along with solid foods. They thought he would be a baby who needs food to anchor it down and he would grow out of it and be fine. It didn't last long. SO they put him on Prevacid 7.5mg. We found out he had a cow's milk protein allergy so they switched him to Similac Alimentum (or Nutrimigen for Enfamil). That didn't help either so they wanted to switch him to Neocate. Then for a week he did good so we decided not to do Neocate yet. Then he got RSV and it came back even worse and they upped his dose of Prevacid to 15mg a day instead of 7.5mg. Then at a yr we started soy milk and we just found out this last December he has a soy allergy as well. So now he is on Neocate Jr. He doesn't spit up and out as often,but he still refluxes a lot. His Prevacid was upped to 30mg til insurance didn't want to pay for it so he was switched to Prilosec 20mg a day. He does a lot better on the prilosec I think.

My son gained weight too and so they felt he must be doing ok, but that irritated me b/c he was obviously not doing well with how much he spit up and he had major constipation issues and was such an unhappy baby (still).

The boppy in the crib is a great idea! If my next child has these issues (I pray they don't) then I will use that. Our wedge thingy always made him slide down.

Kera - posted on 02/13/2010

59

3

10

My daughter was born at 30 weeks and has GERD. I found a sleeping chair online for $60, but my husband and I are on a strict budget. So, instead, we put a Boppy in her crib with a baby blanket over it so she can't flip it and she's now sleeping through the night with no issues!

Tracey - posted on 02/11/2010

20

35

3

My son has had GERD from about 1 week old. It has been a blast - jokes! No, it was really hard to deal with at first especially the sleep deprivation. He also suffers from obstructive apnoea during feeds from the reflux. He is on LOSEC which has helped with his pain tremendously & we have learnt to deal with & carfully manage his symptoms & just do things to limit the reflux or vomiting. We feed him upright & keep him still & upright for half an hour after. His bassinette mattress is elevated. We tried formula thickner in his EBM nut it just constipated him. He was on domperidone but it stopped working after about 6 weeks that was when we changed to Losec. We change his nappy prior to feeds & try not to jostle him too much after a feed. We were using Gaviscon (really helped too) in his bottles but have not had to use it lately. We are breast feeding him but mostly EBM in a bottle as he vomits less from that with a couple BF a day more for comfort & we give him a bottle of formula at night, as it helps him sleep through longer to the next feed. I noticed that when I was trialing him on formula fully for a few days that he vomited less. The doctors were quering a milk allergy originally but then thought he had a hernia or something wrong with his bowel as he experieces bad pain & strains, grunts, holds his breathe when passing a normal bf bowel motion (not constipated). They don't think he has a hernia but are kind of just monitoring that situaion. Anyway, we have just kind of gotten used to it all & Ashton is gaining weight really well so we must be doing something right. What sort of things have you done to help with your son's GERD?

Brittany - posted on 02/07/2010

113

30

6

My son is getting a ton of different meds right now he is still in the NICU. I do know that he is getting albuteral (spelling may not be right) treatments. He still has a NG tube and will be getting a G tube soon he does aspirate some times but they keep saying he may have reflux. And they havn't said anything about allergy test yet and he also has a distended stomach but they did test and said it look fine but his liver is alittle large but is working fine. And from his pulmanary hypertention his heart is enlarged so he is on viagra, bocetin, and nitrous gas that is through the vent with his O2. Since he is feeding well and gaining weight they are not to concerned with any of that they are focusing on his lungs and hypertention. He is actually on a diet now. He is only getting 17 claorie formula well what I call formula not really sure what it is...lol I know its gross.

Chelle - posted on 02/06/2010

322

47

78

For my son s dysphagia, all he does is aspirate on thin liquids. He was on nectar thick but is now on honey thick. His malacias we are waiting on him to "grow out of." We do the breathing treatments for his asthma too. We also do pulmicort, does your son do pulmicort too? How does he tolerate the treatments? My son actually tolerates them really well. Do they suspect he has more issues than what you already know? Will he get allergy testing done? My son is going in for allergy testing on the 17th of this month (well, his first appt anyway) and he is having a barium swallow for his dysphagia done on the 16th as well as an abdominal x-ray for his distended belly.

Brittany - posted on 02/04/2010

113

30

6

Well my son has broncopulmonary dysphagia, he is also allergic to milk, and has to have asthma breathing treatments but we don't know for sure if its asthma and he has a trach and pulmonary hypertension so far thats all we know of. Oh and he has really sensitive skin so everything is breaking him out.

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms