How Far do I Push?

[LuvMy2Girls]

My daughter is almost 5 mths old & has been in the hospital 3 times for lung infections. We live in Alabama & children's Hospital is supposed to be the best. Well, they said they tested her for cystic fibrosis. They didn't. She is on medicaid and the doctors heve been dragging their feet. She has been on antibiotics at least once evry month,she weighs11 1/2 LBs, she chokes on the mucus so bad she throws up. They are going to do a sweat test, but I want them to do every test possible. Can anyone tell me all the tests that can be done on infants? I'm praying that they come out negative but I want to find out what IS wrong with her instead of never knowing and not knowing how to treat it. I started writng down everything about her and then did some research on cf. It's scary. She isn't thriving like she should, her poop still looks like newborn &is very oily. acid reflux, extended belly, constant lung infections, she is so salty when Ikiss her my lips burn. Her sweat i even sticky. Everyone thinks I am overeacting & just want something to be wrong. I just know SOMETHING IS WRONG. I'm her mother. I've allready started looking for homes close to the beach b/c if she's positive we're moving. But how far do I push until people start questioning me? The hospital allrady turned me into DHR b/c they said I wasn't feeding her & it was their dr who told me to come in. She does have laryngomalacia & everyone is saying that that's what it is. I even had some inlaws say she stayed sick b/c my house isn't clean. And it's not, but it's not nasty. It's cluttered with clothes and toys. I have a 2 yr old who is very attention starved b/c if my 5 mth old cries, she starts coughing and choking and can't brathe. So she pretty much gets held all day. Normaly, the first chance I get to pee is when my husband gets home from work. Anyway, if y'all could pray for Madelyn I would really appreciate it b/c y'all know from experience how hard cf can be. I don't want her going throuhgh that but I will do anything i have to to make her comfortable. I pray that her tests come negative, but I need to know what's wrong also. Please reply and give me some names of tests. thanks.
Paige

 

[Emily65Roses]

The two tests they do are the sweat test, and a blood test checking for the CF genes. You should get both of them done. As for how pushy to be... extremely. Doctors are jerks a lot of times, and you really need to be your baby's advocate. No one else will be. Don't take no for an answer. Demand CF testing.

 

[anonymous]

THey should have sweat tested her a long time ago with those symptoms!!! I really feel for you, it is so stressful, esp. with a two year old running around. I've been there too... IT really sounds like CF, but you need the sweat test. If she is positive, as upsetting as that is, there is much you can then do to help her.

take care

 

[julie]

Sweat test first, but that can be inaccurate for a number of reasons, and is even less reliable in infants. I would push for a CF blood test if I were you. And ask that it go to Quest Diagnositcs for an extended panel testing. Other companies (like the "in-house" lab at local hospitals) only test for 25-89 of the most COMMOM CF mutations. There are over 1000 known CF mutations and more beind discovered all of the time, Quest Diagnositcs tests for all those 1000+ known mutations. What area do you live in, there might be a family around that can help you. I honestly think it's best to chat with those who have "been there, done that" sometimes. It's ot always easy to be pushey, especially when some doctors are such Butts (Tried for another word <img src="i/expressions/face-icon-small-smile.gif" border="0"> )and can make you feel so bad about advocating for your little one. Also, a parent in your area might be able to recommend a really good doctor to go to, someone who knows what they are doing and will test what you request them to.

Keep us posted and come back with more questions....

 

[littledebbie]

My Mom was a young mother with a 2 year old when i was born and started declining, crying constantly wouldn't let her put me down etc. dr.'s just thought she wasn't feeding me right, or that she was just young and crumbling under the stress of 2 small children. She finally had her sister, who was a respitory therapist of all things, call the nearest childrens hospital and make an appointment for me to be seen. Get pushy, get mean, kick butt and take names, if it is CF this won't be the last time you have to get commando with the medical community.

Side note, a young doc at the childrens hospital took me out of my Moms arms licked my stomach and said, it's CF. And that is how I was diagnosed. You just have to find the right Dr.

Good luck to you!

 

[anonymous]

We also go to Childrens in Birmingham-I have always had good drs there but you might not be getting to the right people. Have you seen any of the CF drs? Dr Lyrene and Dr Clancy are very good- ask to see them. It really sounds like to me that the symptoms are there. I would push push push till they test her- I agree sweat first and then further. You will be in my prayers. Susan

 

[anonymous]

you are so lucky to know all about this at her age you see the signs and you as the mother know that there is something wrong go with that push push and keep pushing. my son was born happy and healthy so we thought at 2.5 month he got really sick and was hospitalized and eventually but into a coma for 2 weeks and basically stayed sick for 2.5 more years because they never thought to test for cf and neither did i. he had all the signs your talking about except one and that was he never had a problem gaining weight so the doctors never thought that he would have cf because at 2.5 yrs old he weighed probably around almost 35 to 40lbs. long story short he has cf and was not diagnosed till he was 2.5 yrs old so the sooner you know the better your childs life will be. luckly for us my son is doing great and you would never know that he had cf i mean its hard at first but then it does get a little easier and more so everyday good luck and hope you find out whats wrong as soon as possible

cheryl mother of 5yr cf

 

[LuvMy2Girls]

first of all, thanks evryone for replying. we live in Pell City, so we did go to Bham @ childrens. She saw Dr. Lyrene after her first trip to the ER & I really liked him. He was the first Dr. to ever praise me for knowing so much about my child. He diagnosed her with Laryngomalacia from an xray. I f anyone knows anything about that, it basically means her larynx and esophagus collapse b/c it's so soft, when she breathes in. But then later she was still having one sign after another of something else. We see him again on the 23rd of this month. I just found out he could diagnose cf. Her appt is for a sweat test o I know hell do a blood test if I ask. Thank you for the support b/c everyone is telling me I'm overeacting.
-Paige

 

[JazzysMom]

I am soooooo glad to hear that U have a daughter willing to listen & work with you on any aspect. Good LUck & let us know what results come in!

 

[anonymous]

My son had tracheomalasia when he was little- same thing I guess but it was his trachea that wasnt firm and would collapse-man those were some rough times. He finally outgrew it. Im glad you are seeing Dr Lyrene- he is a kind man. Susan

 

[rose4cale]

Paige, as everyone has said...PUSH! I bothered our regular pediatrician weekly when Cale wasn't thriving. His BM's were so abnormal. They really thought I was overreacting. I pushed for a 2nd opinion at Cale's 12 month checkup and I could literally see the lightbulb above the ped. head. He left the room and came back and said...just like this..."it could be Cystic Fibrosis" I felt like I was hit by a Mac truck. I did the research and he had text book symptoms. Imagine my reaction when my 2nd opinion told me Cale was going through a phase. So after more research and this site, I realized we needed to be tested at an accredited CF center. After numerous false and inconclusive sweat tests, they did a blood test and there was our diagnosis.

I HAVE been there, where all you want to know is WHAT IS WRONG WITH MY CHILD?! Even my husband thought I was over reacting, but like you said, A Mother just knows. Stick with that until you get your answers. Your child is counting on you for the answers. After Cale's diagnosis and treatment, we could go on with our lives. He is a tank now, and a typical 3 year old boy with a heart of pure gold. He amazes me daily.

Best wishes and let us know if you have any other questions.

Shelly

 

[anonymous]

PUSH!!! That's a small work with a big meaning. Only you know your daughter.. and if you feel that strong about something being wrong then more than likely there is. I was diagnosised when I was 18 months old. Yes that seems like so long ago, and im sure alot has changed but, they tested me five times at our area hospital. All 5 times the results were negative. I was finally taken to Childrens Hospital in Baltimore and a doctor kissed me on the forehead and looked at my mother and said "I think I know whats wrong with your little girl". And he did!!! There can be several negative results, but it only takes one positive. Don't give up until you are completely satisified with the diagnosis. Its your baby girl suffering, no one elses!!! Stand tall for her until she can for herself. We are all backing you up. Never think that your being too pushy. PUSH!!!


Shawn 33 w/CF, CFRD

 

[JazzysMom]

The medical profession come & go often in patients life, but family is usually there forever & needs to be proactive........let them think u are overreacting, let them think u are a pain in the butt......but get answers!