Several Questions.

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LuvMy2Girls

New member
Madelyn hasn't been diagnosed yet. Even if she comes out negative there are still things we have to work on. First, her poop is yellow,oily and in the shapes of like, a million bb's. I was reading earlier about some of your children being on alimentum. She is on Nutramigen( which is for milk allergies. she doesn't have as far as we kmow, it just sits better on her tummy.) Would anyone think alimentum is better?
Next...she is on zantac for gerd. I know how destructive gerd is & will make any breathing problem worse. But the side effects are horrible. Anytime I give it to her I know that will be a day I yearn for a ciggarette. But I quit, for her. She screams all day. She can't tell me what hurts but I think it's her belly. I give her gas meds, tylenol, bounce her, massages...nothing calms her down. Is there something better that won't give her side effects as bad?
Last...they have her on albutorol. Which every parent knows why I hate it! I'm supposed to give it to her in the morning & night. Can we say "no sleep"? Plus, b/c she's tired, she cries. I saw something on the internet that started with a "b" but can't find it again. It's not supposed to make them hyper.
Sorry,one more...Her head is big anyway(hereditary) but has stopped growing & is still in 0-3 ths clothes. She's one week shy from 5 mths. She's also behind on her milestones a littl. I don't have a normal kid to compare her to b/c my 2 yr old is extremely advanced. She was 2 mths and started trying to crawl and at 8 m walked and could talk better than 3 & 4 yr olds. So I was wondering has anyone else had these problems or are they even problems? Her dr tells me it's ok she'll be ok she'll come around but they know how bad I'm stressing.
Any replies are greatly appreciated.
Paige
 
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Allie

New member
as far as the milestones thing, I hate to say it, but don't stress right now. My daughter was far advanced mentally, talking in full paragraphs as well as you or I might by 18 months, but was delayed physically. Kids are just all different. Give it a bit more time before you start to panic, and remember that averages are just that.

As far as the albuterol, are you thinking of Xopenex? It doesn't start with a 'b', but it's supposed to have less side effects...

<a target=new class=ftalternatingbarlinklarge href="http://www.xopenex.com/">http://www.xopenex.com/</a>
 
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veptrmom

New member
Nutramigen, I did this one with my daughter also because of tummy problems, this is what causes the yellow poop. We didn't have the bb's are you are describing. Maybe too much iron? I think Nutramigen has a low iron formula. We also tried zantac, reglan and bethanechol. Zantac didn't work all that well for us. Reglan did but she has epilepsy and the two don't mix. So then it was Bethanechol which isn't as good as regland but did the job. We are now on Prevacid (she is old enough to chew a tablet, not sure if they make it in liquid) and have done great. It really helps at night when she lays down as you were describing with you daughter.

Have you tried mylicon (sp) drops to help with the gas? You may just have a baby with colic unfortunatley. But again since she can't voice her pain, it's really just a process of elimination unfortunatley.

I have a difference of opinion on the failure to thrive, this was a HUGE issue for us when my daughter was a baby. Like you I had a "normal" child before her who excelled and as you walked early at 9 months. Never really crawled just walked one day. My daughter didn't gain much weight despite, the nutramigen and duocal and other high calorie foods she ate once she could eat table foods. She was 16 pounds for nearly eight months. Long but 16 lbs. entirely too skinny. We had her referred for OT at 6 months old to help with strength because she had none. Then around 8 to 9 months old we were referred for regional services who was able to assess her and find out exactly where she needed help and then customize a plan for her. It worked for us. I do agree that every child is different and that they all do things in their own time frame BUT having a child that neeed so much help, to me it wouldn't hurt to at least have your daughter assessed. JMO
 
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anonymous

New member
Hi,
I can't answer a few of your questions because I am still preg. with my child that has CF. But as for the formula, I do have a few thoughts. My son had a TERRIBLE time with formula and we tried everything. As a previous poster suggested, Mylicon drops did help some. In fact, they helped him to the point that we thought he was okay. Until he got worse again. The only thing that actually seemed to work was the Good Start soy formula. Its a bit cheaper than Nutramigen and doesn't smell as bad. I don't if you've tried the soy or not, but I thought it was worth mentioning. Also, I had giving the Zantac. My poor baby would scream at the top of his lungs for half an hour every time I tried to give it to him- my desperation is what brought us to finding soy. Good luck!
 
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reillybug

New member
Paige,
Your daughters symptoms are very similar to Reilly's were at her age. She never tried Nutramiagen or Alimentum...we kept her on regular Lipil with iron. We did try numerous soy & lactose free versions, but it made no difference. Reilly cried for the first year of her life. I thought I would go crazy. Gas drops did nothing, and we knew that if she didn't have a bm by mid-day, she was stoped up. She was always either constipated or very very loose. No in between.
She also had reflux from day one. We tried the Zantac liquid, but that stuff tastes HORRIBLE! Eventually, we got the Dr. to give her the Prevacid. It comes in 3 forms - powder (in individual packets that you are supposed to mix with 2 tbs ofwater), solu-tabs (they dissolve on the tounge) and pills. Reilly will not let the tab dissolve on her tongue, so I dissolve it in a 6 cc syringe & add it to her milk, so this works really well. And the Prevacid seems to work much better than the Zantac did.
As far a developmental, I can see where you are coming from. Reilly scooted on her bottom until she finally walked at 18 months. I am not sure that she is "delayed", but she doesn't do anything until she wants to. So, I am not stressing about it. If a child is defecient in vitamins & nutrition like many CF'ers are before dx, then I feel their body is using all of heir energy to grow & survive, rather than learn to walk & talk. Give it some time, wait for your diagnosis, and go from there. Good luck!
 
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anonymous

New member
Size issue sounds a little like my non cf daughter. She was 9lbs when born, so she filled out the 0-3 clothes. But then hardly grew. She was in 3-6month clothes forever! She was the smallest is kindergarten. But took a growth spurt this last 6months. And at almost 7yr, is finally in size 6 clothes. She has caught up for the most part, still one of the smaller ones. We still have to "pin" her pants though. Remember she is without cf, the one with cf is of normal size.
 
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