What should I do?

[anonymous]

I brought my 15 month old son to his pedeatritian. His skin taste a little salty around his hands, feet and fore head and he was hospitalized with bronchiolitis. I asked her if we should test for cf, she told me there is no reason to test for cf. The pediatritan who released him from the hospital also said there was no reason to test him should i listen to the docs or get another opinion? Any suggestions could help. Thanks

Crystal

 

[Emily65Roses]

If you think there's an actual reason to get him tested, see someone else. Especially if their main reason for not testing is "no family history." A lot of doctors use that as reason not to test, and it's ridiculous. MANY MANY MANY of us are first in our families. I'm the first and only in my family and my mom was one of 6 (5 of which had 2-4 kids), so there are a lot of us. Trust your intuition. Hope you're wrong, but still today a lot of CFers aren't diagnosed until later in life, and that creates more problems. The sooner you find it, the better, because you can start treatment to prevent damage right now.

Oh! Just make sure if you get the child tested, to do it at a CF center. Other places, no matter how smart, don't know how to test and/or read the results correctly. This part is vrey important, anyone here will tell you so. So if you're going to bother to have the child tested, take the extra step to do it at a CF center.
<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/chapters_and_care_centers/">http://www.cff.org/chapters_and_care_centers/</a>

 

[babyjaden2004]

Jaden was diagnosed through routine blood work when she was born but both sweat tests come back inconclusive (sp?). I was concered but my ped wasn't, he kept saying she is gaining and growing no need to worry, well I did. When she was 8 months I got another doc to order a sweat test and it was postive. I would push it or find a doc that will help you out.

And yes make sure you go to a CF center to have it done like Emily said. They know what they are doing and how to read them alot better.

Wher you from?

 

[JazzysMom]

I question they say their reasoning for saying there is no reason to test for CF. CF can be tricky & many, many people dont have a family history or "classic" symtoms, but enough that it should be ruled out. Why not rule it out if nothing else? I would push.....for genetic blood testing at an accredited CF center!

 

[anonymous]

Thanks for the advice. I'm from Louisiana.

 

[anonymous]

There was no family history for us either and dad was one of 15 kids. I scoured the family histories and contacted relatives to see if there were any other cases -- nope. DS was born with a bowel obstruction caused by meconium illeus. He passed his sweat test with flying colors -- think it was 31 or 32. But his blood test showed doubled delta f508. Liza

 

[anonymous]

My 10 yr old son was just diagnosed. He has been sickly for years. Do you have any advice for us on where to go now? What to do? I am at a complete loss right now....

 

[JazzysMom]

Are u referring to treatments, meds & doctors? Or emotional & financial? U should look up the accredited centers here on the forum & get into one ASAP. Most (at least mine, but I seem to be very fortunat compared to others) offer everything all in one office. They start you from the basics of CPT (chest physical therapy) which can be manual with your hands or by a device such as the vest, basic meds etc. The gentic counselor goes over things, the social worker & dietician meet with you. Please explain what if anything was told to you that you should do now?

 

[ejaffe]

Hello,
We are from Louisiana also, depending on your area we can recommend some good doctors for you. Our son is 1 year old now, in fact TODAY IS HIS BIRTHDAY! Our son has really really salty skin. You can just kiss his head and lick your lips and its really strong. I

 

[anonymous]

We are going to children's hospital to see a pulmonologist. He just had a positive sweat test. I dont know where to begin from here. I asked for the blood tests that I have read about here to be done this week. The doctor agreed, but now we are waiting to hear from the insurance company. My son has been sickly for years, but no one would listen to me. Finally the doctor agreed to this test following a ER room visit for my son with severe stomach pain and weight loss of almost 15 pounds. Weight has always been an issue with him.....We are just trying to get info and keep our heads up....

 

[julie]

Stay strong, we're here to help and am sure you have lots of questions now that you have recieved a positive test result. I am the wife of a CFer, I haven't ever had a child tested and diagnosed but with appropriate treatment, diet and weightlifting, my husband lives a very normal life-as do most with CF. Keep your head up

 

[JazzysMom]

I have a major suggestion. Since CF gets pretty complicated & u have already dealt with alot...I recommend you getting a notebook or log of some type & writing all ??? down as well as recollections of problems that you remember arising (even if them seem insignificant). Then in the same book write down what responses you get. This will help until you get more answers &/or get into a routine or meds etc if thats where it goes. In the meantime we are always here for ??? & support! Until then just take one thing & one day at a time!

 

[binder642]

I wish I would have thought of that years ago...We are currently waiting for his pediatrician to decide if he wants to do some other testing or send us to Childrens hospital to see a specialist. I am having a hard time waiting for people to decide what they want to do with my child...I want it all now, but unfortunately that is not the way it is working. Does anyone have any financial advice? We have insurance they pay 80 and we pay 20....but with all the testing and specialists that they want to send him to I am concerned about the cost. I want to be able to take him without that worry. I appreciate all of the help so far. We will keep you posted of our progress.

 

[julie]

Depending on the diganosis and how soon they get you over to a specialist (which is REALLY where you NEED to go for further CF testing) you should look into any sort of state insurance coverage for sick/disabled children. You ins. would still be primary but if you qualify, generally they pick up 100% of your copays. Also, look into the insurance options available at work. Do any of htem have a slightly higher premium with an option of a $5 copay vice 20% of the visit. Sometimes it's better to pay about $1000 more in premiums for the year (more or less) than pay $500-1000 EVERY single visit.

 

[binder642]

I will look into the insurance options that we have here. I really appreciate all of the help. I am feeling kind of hopeless right now and you all are helping to keep me going and fighting for what I want for my child. I appreciate it more that you could ever know....You are all a god send!!!

 

[julie]

Binder, what state do you live in? I'll look around and see if I can find anything worth value for your situation. If you prefer to email me that information, you can reach me at <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>

 

[Seana30]

<FONT color=#008000 size=3><STRONG>Go to as many doctors as you think you need to till you get answers!!My daughter had stomach issues for 4 years, and I let the doctors convince me that it was all in her head.  By the time I stomped my feet and said that I was not leaving till I had answers Courtney was 10 years old and only weighed 48 pounds.It took me MANY doctors from 3 different states till I found one that took me serious.  I still feel alot of guilt because for years I would tell her "stop making yourself sick, you are doing it to yourself".You are the parent and know your child best.  If you feel there is something wrong with your child, fight till you get the answers you want and need!!!Seana</STRONG></FONT>