Help, please

[anonymous]

Hello, I have a question for all of you, and I would really appreciate it if you could help me.
I'm a senior in high school, and my genetics teacher assigned us a project to learn more about cystic fibrosis. This week we are doing role playing where five of us are to get in front of the class while our classmates ask us questions about who we're "playing" and what we'd do in our situations:

My situation for this is that I am to be a mother with one child with cf and I'm expecting another child.

I don't know what questions that they are going to ask, so any information would be extremely helpful. Thank You!

 

[anonymous]

Although it will take you awhile to get through them, you should read the posts that are already on here, you will learn a lot. I would also like to say that you will get a lot of nasty people who respond to you with very negative things like, "we aren't here to give you an easy A, do your homework and research the disease." However, my advise (other than what I said above) is to ignore them. GOOD LUCK <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Purplelungs]

OK well first off you wont get the remarks the last poster said because you asked a specific question. I do agree read some of the other posts. Also maybe ask the parents here how they felt/feel with a cf child and then finding out they are pregnant again or wanting another child. I dont remember the title but that was also discussed look for anything with pregnancy, or another child in the title. There are lots of replies on those. They should be helpful.
If I was in the class I would ask maybe, depending on how well the rest of the class did their research or if the teacher asks questions: Whats it like being a mom to a cfer? How do you handle the childs treatments or meds. Does your child act like any normal kid? Can he/she play normally? Does he/she take their treatments/meds well, do you have to fight them? How do you cope? What made you decide to keep the child you are carrying or are you going to go through with it?
Yes some of these questions are hard to answer, some even controversial...but i have seen some of these asked her before to parents. I say direct your needing assistance to the parents here, they will be able to help you more for the parent project. Anything else relating to cf us cfers can help with. Just remember to ask specific questions, it helps us to help you.

 

[anonymous]

in the scenario, if you are a monther with one child with CF, the probabilities of having another child with CF are as follows:
-25% chance unaffected (no CF and not a carrier)
50% chance unaffected carrier (no CF but carries the CF gene and could pass it to their children in the future)
25% chance affected (the child will have CF, one gene from mom and one gene from dad)

-in order for a person to have CF, both parents have to have a CF gene. So, if you already have a child with CF, both you and the dad (in the scenario) will have a gene each.

-There are currently over 1300 KNOWN CF mutations and more being studied and discovered
-most CF genetic tests only search for the 25 most common mutations, a lab named genzyme tests for 86 and a lab named ambry genetics tests for 1300 (they view the entire gene)
-The CF gene is found on Chromosome 7 (humans have 46 chromosomes, arranged in 23 pairs. IN each pair, one set is contributed by mom and the other by dad)
-you can have genetic testing done on an unborn fetus by ambryocentesis (sp?)
-CF is commonly diagnosed by a sweat test (sweat chloride levels), and is somtimes confirmed by a gene test and sometiems a gene test is done just so parents know.
-PGD (preimplantation genetic diagnosis-you can google it or look on MSN-it's slightly extensive) can be used in combination with an In-Vetro procedure. ln PGD the doctors will take an embryo in a certain stage (I believe stage 8) and take one cell to look at it (this does not harm the embryo once it gets to this stage). They will be able to determine (depending on how advanced the PGD lab is) if the embryo is a carrier of the CF gene (it is especially helpful-in your scenario if you have identified the MUTATION that your child with CF carries. Mutation meaning the specific type of CF strand the child has) or if the embryo has CF. All embryos that are just carriers or don't show any mutations will be saved and some implanted, some frozen for further transfers. Most times the embryos with CF are stored for research, and sometimes destroyed.

And then as the last poster said, if you just read some of the posts you will probably be able to gather some more information. That's about all I can come up with right now.

Also, just have to say...I usually am one of those people that get offended by people coming here wanting an easy A (they usually want general info you can find by doing a search, like "what is CF?", and they never come back to say thanks), but you stated your intentions of coming on this board clearly, and the questions you posted aren't something you can have completely answered by just reading and looking around. I hope some more people (maybe mothers in your scenario situation) will come give you some suggestions. If you have any more specific questions (of if anything anybody posts sparks some interest) please post them, people really like to answer specific quesitons.

Good Luck,

Julie (wife to mark 24 w/CF)

 

[NoDayButToday]

<blockquote>Quote<br><hr>Whats it like being a mom to a cfer? How do you handle the childs treatments or meds. Does your child act like any normal kid? Can he/she play normally? Does he/she take their treatments/meds well, do you have to fight them? How do you cope? What made you decide to keep the child you are carrying or are you going to go through with it? <hr></blockquote>

To add to Ashley's comments, some other questions the class may ask and that you should probably be able to answer:
- Have decided to do amnio or genetic testing on the baby (in utero) prenatally to see if they will have CF? Why or why not?
- What if the baby does have CF? Do you think having two CF youngsters will be harder than one, or do you think adjusting to having another CF baby will be easier than adjusting to your first's diagnosis?


Good luck!

 

[anonymous]

I want to thank all of you. I was not coming in here looking for an easy A but a different perspective. I have done some research on cff.org and on the cysticfibrosis.com main page, but that info. is just statistics and symptoms and treatments, and I guess I wanted more personal answers. Once, again thank you, I didn't even think of most of the questions that you proposed that the class may ask.

 

[anonymous]

do you have anything in mind that the class might ask that you aren't sure of an answer? Those are also things you could educate your class on. There is so much misconception about CF that it's wonderful when people want to get the correct information out there. We're more than happy to help people like yourself who come here with specific questions. If there's anything else, just ask.


Julie (wife to Mark 24 w/CF)

 

[anonymous]

If this helps you at all. I have two children. My first was born with cf and it was a big decision to have another child. There was alot of fear of the future. I got pregnant when my son was 9 yrs. old. I was 37 at the time, so I had to have an ammnio test. I worried alot during my pregnancy especially in the early months.

It was a very happy day when they called with the results that I was having a healthy girl with no cf. We were prepared to deal with whatever we had and felt we at least had experience in cf, so we knew what to expect..

Our daughter was born with a loud heart murmur. (Pulmonic stenosis) and had an angiogram at two months old.............It was very overwhelming at first and we were afraid to bond with her until she had her procedure done.Actually christened her earlier than we planned. We didn't know what to expect. She is now 13 and doing great, very active in sports, etc.

I wouldn't trade either one of my kids for anything in the world. I paid my dues for them and work at keeping them safe and healthy every day. For me it was worth taking a chance.

Hope this helps you.
Arlene