Advice for my baby...

A

anonymous

New member
Julie--It certainly was not my intention for you to receive unsolicited email. I apologize if by asking Ambry to clarify a few facts that I felt not only I but certainly others would benefit by that you were intruded upon. Didn't even think something like that would happen. I am sure if you send an email telling Ambry not to contact you it would end.

My intention was one of gaining insightful information for all to share as this is a web site for all those who have cf or support cf. In my short time I have gained so much from everyone involved here and I truly appreciate everyone's openness and sincerity in sharing their knowledge and experiences. Thank you all!

I apologize that my inquiry to Ambry has caused you distress.

Janet 47 CF
 
A

anonymous

New member
As I was posting this reply I realized I sent it to the wrong thread and in the meantime I see that Sandra has replied as well to this issue of unwanted emails from Steve at Ambry and also about her concern of wanting to do what is best for her child which is what we all want...the best. And sometimes that is not always clear and maybe sometimes there is not much difference between what is 1st or 2nd best but either way here is what I had intended to post.

Julie--It certainly was not my intention for you to receive unsolicited email. I apologize if by asking Ambry to clarify a few facts that I felt not only I but certainly others would benefit by that you were intruded upon. Didn't even think something like that would happen. I am sure if you send an email telling Ambry not to contact you it would end.

My intention was one of gaining insightful information for all to share as this is a web site for all those who have cf or support cf. In my short time I have gained so much from everyone involved here and I truly appreciate everyone's openness and sincerity in sharing their knowledge and experiences. Thank you all!

I apologize that my inquiry to Ambry has caused you distress.

Janet 47 CF
 
A

anonymous

New member
YIKES!!! <img src="i/expressions/face-icon-small-confused.gif" border="0"> I was on the right thread just never went to the next page to see my reply...sorry you have to read so many replies from me.... Have a nice day everyone. I think my computer needs a break from me.

Janet 47 CF
 
J

julie

New member
Janet and Sandra,

I realize from you posting that this was not your intention-nor did I think it was in the first place, I was just a little ticked that #1. somebody from ambry finally contacted me (I spent a month or two trying to get information on their testing to put on my male infertility website-nobody ever got back to me) and #2. they were so ballsy about it-although the gentleman is nice and not rude and seems genuine about resolving the issue.

I don't mind speaking to the gentleman at Ambry, whatever they can do for US CF families to better their tests is well worth anyone's time. I just think it's ballsy of them to do so... I am cooperating with them and am working on getting the information to them (without intruding on anyoone elses personal space because this is a personal issue of someone on this board and although I don't mind disucssing it HERE where we all know eahother, I don't want to share it with some stranger).

Janet... you poor thing. Go get yourself a massage or something. I've done things like that too, think I'm on the wrong thread, turns out I'm on the right thread, I'm all confused.... You aren't alone <img src="i/expressions/face-icon-small-smile.gif" border="0">. I just have to say, your posts made me laugh really hard, so thanks for that.
 
R

ReneeP

New member
The info on the testing companies is interesting and good to have, but maybe we should start a seperate thread about it. Let's get this one back on Carrie and Emily since this thread is really for them.

Carrie,

I would basically just ditto what everyone else said... absolutely have the test done and it's very good that you had to foresight to ask the dr about it. I am very suprised, however, that the dr told you that they have trouble getting CF babies to eat. With CF there tends to be opposite extremes on that. Some CF kids do have trouble eating while others can't get enough food. I have two daughters with CF. My 11 year old can out eat anyone at anytime...she is a bottomless pit and does not have a weight problem. My 7 year old just picks at food and is very tiny. Same genetic mutations...both Double Delta F508. Opposite ends of the spectrum as far as eating habits.

Whether or not your daughter has CF she is lucky to have a mom who is looking out for her. Take care, try not to stress out about it and remember that 99% of all sweat tests are negative (at least that is the statistic I was given).....


If I can be of any help to you (answering a question, or just need someone to vent to) feel free to e-mail me. lindareneelyons@hotmail.com.

Good luck to you!
 
C

CarrieBear

New member
Hi,
Thanks for your post. The more info I am recieving about cf, the more my daughter seems to fit. She has always had very bad smelly gas and also reflux. Now that Iam starting her on cereal she is having a lot of issues with gagging and throwing up during feedings. She began treatments on the nebulizer with pulmicort 2x a day, it seems to sort of help with her coughs but not really... she began regular treatment on Monday. It seems like she should be showing more improvement and less wheezing, but that is not really the case. I have to wait two weeks for her apt. for testing. But on just the symptoms alone I am becoming more convinced that my daughter qualifies. Does anyone have any suggestions on starting solids with reflux issues?
Thanks,
Carrie
 
I

izemmom

New member
Carrie

I pm'd you with some info/ideas about solids and reflux, because my replies kept getting blocked. Figures this one would go through!
 
J

julie

New member
Sorry about that Carrie... Didn't mean to run off with your topic.

Thanks for the reminder Renee, I had honestly completely forgotton and got wrapped up in this whole ambry/quest thing.

No more about that...
 
A

anonymous

New member
Carrie-
My daughter was a good weight until about 1yr. old when she stopped gaining weight. For some reason the weight issues can onset when they start eating table food. So you can't say she doesn't have CF because shes a good weight. Not every CFer has a problem gaining weight. But not to discourage you.....because CF is farely rare the chance of her not having is higher than having it.

Good luck, getting her tested is the best way for you to know. Keep us posted.

Lynsey-Mom to Avery 2yrs. w/CF and Rhett CF carrier
 
N

nikkig

New member
Definitally get emily tested, it's better to know than to not...when my niece was diagnosed she was 15 pounds at 11 months and she ate like crazy... but right before we found out she had so much mucas in her that she didn't want to eat and she would grunt and gurgle like she was trying to get it up. she now takes enzymes she is eating good and gaining weight (5 pounds in 3 months) =)...my niece had basically every symptom there was and they were still saying it was asthma, broccilitis, allergies etc.. My mom said she knew from the point when they said they wanted to test her, she went online and read up on it, when she read they taste salty and they have soft stool from the food not being digested correctly. I would strongly suggest getting the test done because everybody varies, your saying the doctor said it is hard to get cf kids to eat... when I read that they ussually have a really good appetite and like I said my niece ate alot. please let me know how everything goes good luck and god bless Nicole
 
You must log in or register to reply here.
Top