NEW and Need help

[Momofsix]

Hello I am glad I found this site. I will tell you about my situation......
I am married for 22 years to a wonderful man<img src="i/expressions/present.gif" border="0"> We have 3 biological children Miranda 20, married. Josh and Aaron, twins turn 18 in a few days, graduated high school. Michael was adopted 9 years ago, he is 10 non verbal on the autistic spectrum,.. still working on that one... In a couple of weeks after some long hard work my 2 cousins ages 13 and 9 will be coming from Florida to Ohio to live with us forever<img src="i/expressions/face-icon-small-smile.gif" border="0"> <b>Brandon age 13 has CF </b>I am aware of it and some of its aspects but I am searching and studying to know as much as possible to give him the best he deserves. Both boys have had a rough life with birthmom.. any tips would be greatly appreciated... Thanks so much Laura

 

[Imogene]

Mom of Six:

If you repeat this message in the ADULTS section of the forum...people will quickly respond...this section doesn't get looked at that often.

Jeanne

 

[coltsfan715]

I am not a parent of a CFer, but I have CF. I did want to say that one thing I really appreciated when I was in school and in my teens was that my parents didn't hold me back from being as normal a kid as possible. Obviously make sure he does his meds and takes care of himself, but my parents let me participate in sports, play in the rain, go out late (once in HS), go to parties and hang out with friends so long as we weren't causing trouble they let me be a kid. I have met several of people around my town with CF that their parents kept them under lock and key because they were afraid that they would catch something. Understandable to be protective, but that is no way to live. Also the more active he is the better he will be lung wise with exercise and things.

I would get an appointment set up with a CF doc in your area. I think if you go to CFF.org you can look up CF Centers in your area. I would get him in to see a doc as soon as possible (not that you didn't know that) so that he can get to know them and vice versa before there is a problem.

I do hope that things go well with his transition and wish you the best of luck.

Lindsey

Also wanted to say this. Something to look for if you think he may be getting sick - decreased appettite was always big with me, weightloss, tired, coughing more, more productive cough, short of breath. In case you had not come across that in your researching. Weightloss is important because the more you weigh the better your lung function tends to be.

 

[Landy]

Laura
First of all, welcome! And I commend you on taking on the care/upbringing of your 2 cousins!
Having a child w/CF will definitely have it's challenges just like raising an autistic child does. I would suggest you check this CF website homepage to try to locate a clinic in your local area that specializes in CF care as your first step. They should have a social worker, respiratory therapists, dietician(sp) and possibly a psychologist there on hand to assist Brandon & yourself with any needs you may have.
You mentioned he's had a hard road with his mom....if he hasn't been given the best of care in the past I would bet you'll see an improvement in his condition just by being under the care of a doctor that specializes in CF and by doing as he/she recommends.
Please continue to ask any questions you may have. There are a multitude of CF people here that would be willing to help in any way we can. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[laurabay17]

I agree with everything above...having a knowledgeable doctor, having time to be a normal kid., etc. My parents were great too...I never missed out on anything to my knowledge. Exercise is fantastic, and when/if there comes a time when he doesn't make enough time for taking care of himself at home (mainly postural drainage), exercise will make up for that. I know alot of us have been through that as a teenager, yoiu don't always make enough time to take care of yourself like you should. That's where parents come in, to be your reminder, to let us know that if we need help all we have to do is ask. Good luck with everything, and there are people from all over the place on here that you can ask anything at anytime.

 

[anonymous]

Where in Ohio do you live? My son who is 3 is seen at Columbus Children's, they have a great team of doctors at the CF clinic. You really should get him seen as soon as possible for another evaluation to assure that he is receiving the appropriate treatment. My opinion regardless of whether there is lung involvement now, he still needs to do preventive care to avoid issues down the road.

Let me know if you have any questions regarding doctors etc in Columbus if that is where you will be going.

Mom to 3 1/2 yr old son w/cf