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Hi all, I haven't posted in a while, things HAD been going really well. Well, at my daughter's April yearly blood draw it came back that her vitamin D levels are low. (27 and normal for a 3 year old is 30-100- YIKES!) The dr. prescribed Drisdol which is 150.00!!! I do not have that kind of...

Hello, I remember reading on here a few months back about a powder you can add to your child's food to add more calories to help with the weight gain. I can't remember what it is called- anyone know? Can I buy it at Walgreens over the counter or do I need a prescription? Also, do you feel as...

Hi all! We just got Ava's newborn screening results and they said everything is NORMAL! It still doesn't feel real- I keep thinking they are going to call and say there is a problem. Thanks everyone who replied to my poop post earlier. I guess I was freaking out about nothing... Just wanted...

Hello! We are finally looking like we are getting a vest! My daughter is quite small and at clinic the smart vest seemed to fit her best. Of course she freaked out even putting the thing on, we didn't even attempt to run it. I was just curious if anyone has it or has used it and what you...

Hi all, I wrote in last week so upset that the dr. saw a slight bright spot on the lower bowel on my ultrasound. This is after the tech. told us everything looked perfect and my husband left! Anyway, went in again yesterday to the same perinatal center. I saw a different techinician and dr...

Hi all, I haven't posted in awhile. I think the last time I did was back in the fall when I found out I was unexpectedly pregnant. We decided against an amnio, and have had level 2 ultrasounds instead to look for signs of a bright bowel (my daughter Kate had this at her 20 week ultrasound.)...

Hi all, My daughter has been having major on/off constipation issues for the past two months. The CF doctor put her on half a cap of Miralax a day indefinitely. Well, it is improved for most days, but she is still not the same and still has the straining occur. It is just horrible! She just...

Hi all, I am extremely stressed today to find out I am unexpectedly pregnant. We have always wanted another child, but always planned on doing PGD. We even saved for it. Well, I've been late and feeling weird, so I took a test today and it was positive. I feel like a horrible person that I...

Hi everyone, I am becoming increasingly stressed out with my daughter's recent constipation. It all started a week ago Monday. Suddenly, she is crying, straing, and just plain miserable trying to poop. When it finally came out last Mon. it was big and hard. Our clinic prescribed Miralax for...

I'm a little embarrased to ask this question, but my toddler has a reddish/skin colored bump right at her anus. She is acting perfectly normal, but I did just change a solid little poop. Do you think this is a hemmoroid? I didn't know it was possible so young.... Or could it be rectal...

Hi all! Kate had a great clinic visit a couple weeks ago. Hardly any weight gain from the previous visit, but she had a nasty case of hand, foot, mouth for a week beforehand, so the lack of eating with that they thought probably caused the little weight gain. She had a clear culture which...

Hello! I was curious if any of you, or your children are trying the phase II drug PTC124? It sure sounds promising for those with a nonsense mutation and I can't find anything online about how the actual trial is going. My daugter has the delta f508, but she also has Y1092x which is so rare...

Hi all, My daughter has had a cold with the green nose gunk, and a slight fever so the dr. put her on a month of TOBI. We won't have her throat culture back until Tues. so I am hoping the PA is not back and the dr. is just being overly cautious..... Anyway, she has had about 3 doses so far...

Hello all, My daughter was admitted last spring for PA. THey did eradicate it and she has had 3 clean cultures since. YAY! Anyway, they couldn't get in a PICC at the time, said her veins were too small (she was 6 months at the time.) I guess my question is, I know it will happen again when...

I was on the CFF drug pipeline page and I was curious if anyone knows anything, or is trying this drug in phase II right now. If I understand it, it sounds like it would really help those with nonsense mutations (which is what my daughter has). I was curious if anyone knew anything about it...

Hi all, My almost 14 month old has started to get a runny nose AGAIN and this time there is some blood in it. We do not have a humidifier in our home, and the air can get pretty dry. My husband actually said his nose has had a little blood in it too. I was just curious if any of your kids...

Hello, Does anyone have any advice for switching a toddler to table food and a sippy cup? My daughter is almost 14 months and we are still struggling with it. I think the main problem is that so many people I know have said they just took the bottle and baby food away and their child learned...

My daughter is 13 months with CF. She has had a bad cough for about 10 days now, and is on Ceftin for it. (it has been 7 days) Today she coughed so hard she threw up! I am now totally worried. The cough is better, but it is still there. Has anyone else had their child on Ceftin and did it...