Questions about newly diagnosed baby

[Emily65Roses]

As a matter of fact, Coll and I are planning to meet in April. She only lives about 2 hours away from me. It's very much a personal decision. Doctors and the CFF will tell you not to, but it all depends on how you personally wish to live. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

Jennica,

Your sister in law has a good point. This baby will bring you so much joy, regardless of her having cf or not. To be honest, our son has stayed very healthy since his diagnosis. We work very hard at it - but it's so worth it!

You asked about our prescription plan. It sounds like a lot, but some of this is due to asthma & other health issues. Every child is different & yours may not need the same meds as mine. My son takes albuterol (just 2 puffs before each treatment), Flovent (for asthma after his treatment, digestive enzymes each time he eats (generics shouldn't be used), miralax (for constipation - not everyone needs this), pulmozyme (inhaled during treatment to thin mucous - not everyone takes this either), and ADEKs vitamins (relatively inexpensive). Quite often, he takes oral antibiotics and he's been on inhaled antibiotics 3 times (TOBI). I don't want this to overwhelm you though! It sounds like a lot, but we've just learned to fit it in to our routine...I think we'd be a little lost if we didn't do all of these during the day. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Again, this is just my son and everyone is different. If you have a 3 tier max, I'm hoping you could use this toward some of the more expensive medications that can't be substituted with generics (pulmozyme & enzymes especially. For us, the other meds besides occasional TOBI are fairly cheap).

I hope this helps! Let me know if you have any more questions.

Carey

 

[NoDayButToday]

Yep Em, I am excited <img src="i/expressions/face-icon-small-smile.gif" border="0">.
Jenica, I realized you asked about how many prescriptions: I generally fill 10-12 prescriptions a month, and the copays total about $400-500 a month. It depends on your prescription plan. It is also worth noting that as a youngster, I had fewer medications.

 

[anonymous]

Hey Jenica
Its Jen, I just wanted to inform you of a tv show airing tonight 3/13/05 at 8pm EST.
I don't know if your familiar with the program: Babies: Special Delivery, it comes on the Discovery Health Channel, not to be confused with the Discovery Channel. I noticed the one that comes on at 8pm tonight is featuring something about CF. But I haven't seen it so I'm not sure if the mother has CF or if its her baby. Just thought you might be interested <img src="i/expressions/face-icon-small-wink.gif" border="0">
Jen

 

[Jenica]

I think it's great Coll and Emily are meeting up! I can understand why the CFF advises against it, but I can also see how important it is to have these relationships with other people who know exactly what you're going through. How long have you both "known" each other?

Thank you Carey for all of the prescription info. My local CFF chapter asked a woman with a daughter with CF to call me yesterday, and she said pretty much the same thing. That each child is different, but if you have a good health care plan, you'll be fine. I can't imagine how you would begin to deal with this financially without insurance.

And Jen, thanks for noting the Discovery Health program tonight. We're definitely going to tune in.

 

[Emily65Roses]

Hmm. We met through the forum. So a while. We've been talking via AIM for... I don't know, several months. Since sometime during my fall semester. So Sept-Dec. Probably closer to Sept, but I don't remember exactly.

 

[anonymous]

Emily,

I think it's great you and Coll are finally meeting. I really don't see what the problem is as long as you are both using common sense. I think this is the link that is missing with so many cf patients - don't you need each other? I can understand why they stopped the cf camps, but I'm going to make sure that when my son is old enough and needs it, he has access to other cf patients in similar situations - either via email, phone, clinics, etc. I'm just trying to look at the view from my son's shoes someday... when I'm going through something difficult, one of the things that helps me most is just knowing that there are others in the same boat! Make sure you take a pic and show us after you meet. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[NoDayButToday]

We'll definitely take a picture Carey! And Emily, I think we started talking closer to the beginning of the school year, you still had Absinthesorrow as your screenname. But back to Jenica's little girl-- don't want to hijack a thread <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jenica]

That's okay, hijack away!

I can't tell you what a comfort it is to go on this forum and read about everyone's lives ... the happy times and the not-so happy times, because it is a reminder that this baby will have some of each as well. And although the tough parts are probaby going to be tougher than the things that children/teens/adults who aren't sick will go through, there are other people out there doing the same.

When we first started looking at CF, we saw a lot of blanket statistics and black and white facts. I think putting personalities to this disease is one of the most helpful things for me. It's nice to know what we're going to be facing, but it is a little less scary to find people who are facing these things right now.

I read somewhere in the FAQs about a suggestion to have a whole topic dedicated to parents of newly diagnosed babies, and that seems like a great idea. I'm sure my questions have been answered before, adn I'm not the only one who wants to read about how other people are dealing with it. So thanks for everyone who has had to repeat themselves for my benefit! I'm sure I'll be back with more questions as time goes on, but I'm very glad to have found people who are so helpful and willing to be candid about their lives.

 

[melissamcmichael]

Hi Jenica:
Congratulations on your upcoming arrival. Just know that God only gives his most precious gifts to the people that can handle them! I understand your feelings. I have an 8 year old son with CF. Clay has been very healthy where his lungs are concerned. He leads a normal life. He has been through a lot and he is far beyond his year in wisdom. He has taught his father and I so much. Just a few pieces of adivce and then I will tell you our story. As one reader wrote. Be positive and only associate yourself with positive people. Dedicate yourself to the fact that no matter what kind of inconvenience it will be to you or others Your childs wellfare will always come first. What I mean by that is if you have family that smoke inform them of how important it is to not smoke around yourself or your child. If you are around someone that smokes I believe I read somewhere where smoke can be inhaled off of you for up to six hours. This can be very dangerous to our little ones. In otherwords, do it nicely be remember this is your childs health and not a little problem you have with smokers and I have had to remind people in a nice way! It is very important to keep your child up on all immunizations, especially flu and pneumonia shots. When he enters school be sure and educate the teacher and office staff on what CF is. They are with your child a majority of the day and it is great if they can update you if he has coughed alot and it is also good if you have a teacher that won't sit your child next to a sick child. I was always lucky having great teacher who really looked at for Clay. If you will educate them about CF they will be some of your greatest supporters with your child. I think the biggest part of dealing and understanding CF is feeling like I am doing something to help my child and I mean not just with general care I mean helping to defeat this disease. My husband and I are the type of people that can't really except giving up so we choose to get involved. Since we are not researchers we don't know how to invent a cure so the best thing we can do and other parents of children with CF is to raise money for research. Join your local Chapter and get involved. No matter what you think you have to offer this is the key to getting a cure for our children. I can't tell you how many families I have spoke with who say we are so busy.... I don't mean to offend anyone but how can you be so busy you can't take a few minutes to try and make your childs life better. Now I totally understand those who have very ill children with CF we need to do our part for them. But for the rest of us who have CF kids that are healthy at this point let's get busy!!!!!The key to defeating this disease is raising money. Did you know that CF has its own researchers. We have a great CF president who thought this idea out and how lucky we are to have him. If you think about it there are only about 30,000 children with CF in the US. That is not profitable for drug companies. It's not a big disease like cancer so not many drug companies want to invest in CF unfortunately so here we are with our own research group. I know we will find a cure. I am so positive about this but best piece of advice is get involved, get your family and friends involved the more people we get on board the sooner we will have a cure. It will get you through the fog as well, you won't sit back and let it eat you! I remember the day Clay was born. He was a fertility baby and such a wanted child. You can imagine our first child being born two months early and then they rush him in for intestinal surgery because he was born with a meconium ilius. We were then informed he had CF. Our world collapsed on that day. I couldn't look at older children, every time I did I kept crying because I didn't know if my precious baby would every get to that age. Then I armed myself with knowledge and we willed our child to live! We decided Clay was going to live a life just like every other child and we were going to live each day as if it were our last and that we have done. Yes, Clay has more things than most eight year olds he is spoiled but not unappreciative. You see I have learned that parents of children with CF have been blessed in a way. We know we may not have tomorrow so we never let a day go by that we don't make the best of it. I am so sorry I have rattled on, I wish the very best for you and your family. If you have any questions please feel free to contact me. I have just signed on and found this web site. Also, a great fundraiser is the Great Strides event. I am sure there is one in your area. I have co-chaired ours here in Louisville for the past 7 years. My friends and family love doing this with us and it is such an example of our great support group for Clay and their love for all the kids and adults who deal with CF. Also it will be a safe event for your child because it is an outdoor event. Take care and I hope to hear from you again! Please let me know how the baby is when you have it.

 

[anonymous]

Hi Jenica,

We were able to interview both Children's and MGH prior to our child being born. There was an outbreak of B. Cepecia at Children's which further made us look toward the program at MGH. I know Children's is a great hospital and they are doing all they can regarding the situation. Dr. Dorkin in wonderful!!!!! I can't say enough about the care we receive at MGH... just my opinion... I am sure both are great. Good luck with your decision.

 

[anonymous]

Tapestry, you might want to read through this a bit, it might answer some of your questions and then might make you think of some new ones from just reading it.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

I was searching the internet and found your post and I don't even know if I know how to do this, never "chatted" on this site before. But I have a 7 yr old daughter who has DF508 and R347P combo! She is pancreatic sufficient (she does not have the digestive problems normally associated with CF and does not have to take enzymes). She has very good lung health and has only been in the hospital once which was about 8 months ago. Her infection was completely eradicated with the antibiotics. She has done amazingly well and you would never guess that she has CF. She did have a horrible cough when she was a baby but it turned out that the cough was due to reflux. Once we gave her reflux meds, her coughed stopped completely. But since she had such a constant horrible cough, they thought she may have CF, which turns out she did. But the cough was not from the CF, but instead her reflux. She would aspirate what she was vomiting up back down into her lungs, causing the cough. She outgrew the reflux problem though at 18 months, took her off the reflux meds and she has had zero problem with that since. My daughter did not take any prescription medicines until her hospital admission last Fall. Of course she had antibiotics then to clear up her infection but has not needed them since. The doctors decided at that point to put her on a low dosage of a macrolide class of antibiotics. She takes a pill once daily and will from now on I guess. Studies have shown that long term use of low dose macrolide antibiotics reduces inflammation which helps a great deal with lung health. Other than that, I just give her an over the counter multi-vitamin. My email address is JEFFVICKIEHOLLY@aol.com if you care to email me back. Be very positive, there are approximately 2 dozen drugs in the pipeline now for CF and I truly believe that the answer we have been waiting for is around the bend. I think that there will be a drug in the near future that will be a control for CF, sort of like insulin is for diabetes. As long as you take this drug and maintain a healthy lifestyle, CF will be controlled. That's my opinion. I have a brother in law that is a CF researcher/scientist, keep your chin up. Remember your child may have CF, but don't let CF have him (or her). Teach your child this "I have CF, but CF does not have me".

 

[RMJR]

Please feel free to email me. Our daughter, now 7, was diagnosed at age 3. I'm a writer and have written some articles on the subject, and done a little bit of research. Far from an expert, but I'd be happy to try to answer questions from our own experience and or what I've read. All the very best. Roland raajmerullo@rcn.com

 

[anonymous]

Hey Jenica -

i just wanted to add my 2 cents about Children's vs. MGH. I Love both! i live in the boston area as well, just about a 1/2 hour north, and i went to childrens up until about a year ago. The reason i switched was due to the outbreak, and that i was growing out of it. I recomend it as a hospital to grow up at, but MGH is just as good. MGH does have the 2 postivies which are that they are not having as much of a problem with the outbreak- if a problem at all- and Dr. Dorkin of corse!

When i first got to MGH i was told that my appointments were going to not be during clinic hours, and i was basically being 'quarenteened' for 6 months, because i had come from Childrens, and i could have something with out knowing it. Altough it sounds excluding, it was great, no busy lobby's and basically no scheduling problems. 1 later, its just the same, except im not being 'quarenteened'. Dr. Dorkin is great with his schedules, and barely anyone is there. Im always his only appointment. Its quite awesome.

Childrens is a great hospital, I recommend talking with someone incharge about how they are handeling the outbreak of B. Cepecia, if your comfortable with what they are saying. I suggest it as a nice place to raise your child at, other wise, MGH is great for all ages from what i can see, and Dr. Dorkin is an amazing doctor.

stay strong, good luck,

Kasia

15wcf

 

[lovingBenandCambree]

Jenica, I just wanted to had a hopeful view. I am 25 years old and have CF. I have been married for 3 years and last year had a baby girl of my own. I have had such a wonderful and fulfilling life. I feel that having CF hasn't held me back but pushed me to achieve all that I could. I feel that it has helped me have a greater understanding of the joys of life and I has brought me closer to my Heavenly FAther. I pray that you and your family will reap the blessings that are yours. I know that our family has certainly been blessed and witnessed many miracles. Good luck with everything!

 

[lovingBenandCambree]

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