Nothing is getting done for Madelyn!

LuvMy2Girls

New member
Someone couldn't remeber my story, so I'm going to sum it up b/c it's long. At birth she was fullterm and 4 days late. She came out 6 lbs 8 oz. They said healthy, I said different. Her left foot was turned to the left at a 90 degree angle and her chest sank in so far you could see her ribs when she breathed. She also had NO fat on her. she was literally skin and bones. I mean her skin was actually flapped over and saggy and wrinkeley. At 4 wks I put her on formula b/c she wasn't sucking out any Breastmilk and it finally dried up. Then Nutramigen for milk allergies. At 2 mths she was hospitalized for a resp. virus and lung infection and fluid on both lungs and failure to thrive. She was under 7 lbs. at 2 mths! After the third hosp. visit to the er and then being admitted. They called DHR and said I wasn't feeding her. They also said they tested for cf and they actually didn't. This is Children's Hospital in Bham, Alabama. That is the best place. People come from all over to go there. It is supposed to have the best pulmonary clinic. This past Monday she went to the doctor finally. I asked again and again for her blood test results and SECOND sweat test results and they kept saying let me get someone for you to tell you. Never got them. Asked again...same thing. Then they want to tell me it is all from ACID REFLUX! Acid reflux does not cause rectal prolapse or slimy poop! Also, they tell me Nutramigen is not for milk allergies! Geniuses, I tell you! They couldn't give me advice on what to feed her b/c she refuses baby food. They send me to the lab for more blood to get taken from her. I'm pregnant, so I start crying b/c she's not crying...she's being a big girl. She just looked at the needle and started jabbering to the nurse. She can't even sit up and she is 8 mths old. She's almost 18 lbs, which from what I hear is unusual if it is cf b/c of failure to thrive. But at this age she should be active but isn't. She rolls, that's it. I am at my wits end. This is the best place and they suck! I was supposed to see Dr. Haygood ( Ilike him) and they make me see someone new!! I don't want to act crazy but ti is starting to look like I'm going to have to to get things done. So, they make me put her on pulmacort only once a day instead of twice and back on Prevacid. She is not even spitting up. Her poop is still slimy green and mucousy. They also said Nutramigen does that. It didn't di that with my first one. Speaking of which, My oldest who is 2 1/2 yrs old has not had a solid B.M. in almost 2 mths. Her eyes always have dark circles and she always acts sick and tired. Now don't get me wrong, she has her energetic days! But mostly tired. She gats colds all the time. Any ideas what it could be? She had a blood test and they said her platelets were low. That was it. Anyway I know this is long but I kind of had to vent.
 

CFHockeyMom

New member
Paige,

Keep being an advocate for you children! Insist on an Ambry gene test. Don't leave the Dr.'s office until you get it. Keep pushing the issue. Eventually they'll do whatever they have to, to get you out of their hair.

Try calling your nearest accredited CF clinic and see if they can help you.

Good luck!
 

anonymous

New member
Here is the link to the nearest cf clinic.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/
">http://www.cff.org/chapters_and_care_centers/
</a>
As you know Nutramigen is for milk allergies. My daughter had a severe milk allergy and once we put her on Nutramigen she started to eat and stopped throwing up. You are right - you have to make demands and don't leave until your demands are met. Even if you have to change doctors each week until you get everything you want accomplished. Doctors unforunately as you are finding out don't have all of the answers, you just have to find one who is willing to run the needed tests to help find some answers for you.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 

anonymous

New member
Has anyone talked to you about Celiac disease? If not, you might want to look at the website www.celiac.org. Go to the 1st tab "Celiac Disease" to see symptoms, etc.. I've seen other threads on the CF forum in the past that mentioned celiac as something to ask about when CF is being ruled out.
 

anonymous

New member
Paige,
You need to have the CF tested again (if they've actually even done it). You're story sounds very similar to my son's. He was pale with sunken black eyes, skinny, skinny skinny, failure to thrive, etc, with the pooping issues. They had us in the hemotology/oncology department for 3 months running blood work due to his low counts and stating that he had some rare blood disorder that they couldn't figure out. I was finally at my wits end watching my son basically starve to death and insisted that the CF test be done. That was when the big turn around happened. Not that it's been great since the diagnosis, just that he was finally getting treated for his CF. He was 10 months old and it took him almost a year after his diagnosis to get him back on the growth chart. He's been hospitalized 4/5 times since his diagnosis, but is otherwise a healthy, happy, temper tantrum throwing 3 year old now.

Be a pain in the butt until you get what tests you need done. It's your child, they see hundreds, but your child is yours and only yours. Good luck.

Mom to 3 1/2 yr old w/cf
 

anonymous

New member
I have a 20 yr old son who also goes to Childrens in Birmingham- I have never had any trouble there but we also went to a dr who was in private practice for a long time. She gave up her CF patients a couple of yrs ago so we went back to Childrens. We are going there tomorrow for probably our last visit- he will have to go to UAB after June when hes 21. We see Dr. Gutierrez but my favorite dr is JP Clancy-we saw him when Will was in a study. Have you seen him or Dr Lyrene? Also I would call and ask for Kathy Baines to call me. She is the clinic head nurse- I think thats her title and I can tell you she is great. Please let us know how things go. Do you have a pediatrician who could order the Ambry test? Susan
 

LuvMy2Girls

New member
To Susan:

I forgot what the Ambry test was...But her practitioner could reccomend it. I've seen Dr.Lyrene and I liked him. We saw him in the beginning before she had more symptoms and he dx her with Laryngomalacia which 90% of children have. That was what we thought her breathing problems were caused by. Then we saw Dr. Hagood and I really liked him. He spent a long time with us and played with Madelyn...I like the Drs to get personal. But then when we were scheduled to see him Monday they gave me someone knew. But I'm going to call for the test results and also have her checked for celiac disease. All I know is something's wrong and the drs dont know what. I just feel like we aren't a priority sometimes. But could you tell me what the Ambry test is please?
Thank you!
Paige
 

anonymous

New member
Ambry is the name of the company - it does a genetic test for CF that catches lots more of the possible mutations. Quest Diagnostics also does a broad test like this. I don't know if one is better/more thorough than the other and it's hard to tell from their websites since they both want to claim they're the place to go for testing...
 

anonymous

New member
Paige- I actually mentioned you to Kathy Baines today and I did mention your babys name but she said they see so many patients that she could not remember right off hand- of course you may not have seen her. She told me to tell you to call again- I would keep on calling and calling till you get an answer. They are really a good clinic but I know that things can fall through sometimes. Good luck and let us know when you do get an answer. Will saw the adult drs today and got a good report so he said. It irritates me that I dont even get to talk to them- they are supposed to call me back after they meet with him but they didnt and of course Will doesnt want me to cause a scene. Oh well- thank God for a good visit. Paige- where do you live? Susan
 
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