Thank You

[beckyB]

Thank you thank you thank you all for being so helpful to me, it got me through the longest weekend of my life. We went to our very first appointment at Children's Hospital today. I feel a lot better knowing more info and talking to the people that will help us keep our baby as healthy and as happy as possible ( god bless them)!!!! And I feel a lot better now that our little boy started taking those enzymes. They want him to gain 1 ounce a day. His next appointment at Children's is in 2 weeks.

It turns out that he has 2 delta f 508 genes ? ? ? ? Does that sound right? ? ? ?
So his pancreas and his lungs will both unfortunetly be affected, but I just know that everything will be alright, I feel sooooo much better than I did before. I know that it will be hard but I have a positive attitude.

 

[anonymous]

Hi! So glad you are feeling better about everything. My 2 year old son has the same two mutations as your baby. Keep that postive additude....it's the best thing you can do for yourself and your son!!!

 

[momofjosh]

Becky:
I am glad you had a good Dr. visit and feel more positive. That is the key to keep a positive attitude so you can do the best for your baby. I am the one who posted earlier and said my son was at Milwaukee Childrens Hospital for 19 years and then went on to Froedert Hospital. I am curious where you live? I live in Sturtevant,WI which is really part of Racine. We spent a lot of time at Childrens Hospital in Milwauked and they were wonderful there! My son also had problems with his lungs and digestion. But every case is different. I have 2 other children, neither has CF. I know it is hard when your child is first diagnosed. I didn't even know what Cystic Fibrosis was when Josh was diagnosed. I was only 18 and totally freaked out. I wish I would have had this site to go to talk to others in my same situation. It helps to know you are not alone. Good luck and I am glad you had a good day.
momofjosh

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beckyB</b></i>

It turns out that he has 2 delta f 508 genes ? ? ? ? Does that sound right? ? ? ?

So his pancreas and his lungs will both unfortunetly be affected, but I just know that everything will be alright, </end quote></div>

You would be correct. Its called double delta f508. This is the same mutation I have. I should however mention that while it means that his pancrease is affected, gene mutations have nothing to do with lung function and progression. I have minor lung involvement, and my lungs only started to get affected when I was about 12-13.

 

[Ratatosk]

also known as homozygous delta f508 -- meaning two copies of the delta f508. Our son is three and has the same mutation. Was born with a bowel obstruction caused by meconium illeus and was diagnosed about 5 days after his surgery to repair the bowels. He's pancreatic insufficient, so he needs enzymes. Our medical team has been having us do chest physiotherapy with nebulized drugs since he was about a week old. He's also on ADEKs vitamins, actigall to keep his liver and gallbladder happy and some other medications.

 

[beckyB]

How do toddlers act when you have to do all of these things with them and give them all of these meds because I have a 2 1/2 year old ( W/ no cf) and she is very busy, she hardly sits still when I brush her hair? ? ? Are kids ( baby's , toddlers) in the hospital or really sick a lot or how does all of this work, how do they feel??

 

[anonymous]

We've been giving Max CPT treatments, nebulized medications, oral medications, enzymes, since he was only a week old. So he's used to it. A friend of mine's granddaughter wasn't diagnosed until she was 18 months old and they had a bit of a struggle with CPT because she didn't understand why suddenly her parents were "beating" her. Max is actually relaxed by his CPT and sometimes falls asleep or hangs out and watches cartoons. His latest thing is to grab the oral syringes with medication in and squirt them into his mouth himself. And last night -- he told me I needed an enzyme, too when we were drinking vanilla shakes. So I took one <img src="i/expressions/face-icon-small-smile.gif" border="0">

Max was hospitalized early on when he was a newborn. He's had a few ear infections and colds, but seems to be doing okay. L

 

[beckyB]

Sorry, I forgot to answer you before. We are from the Mukwonago/ Waukesha area, but we just moved to Dousman last month!!! I am very pleased to hear that you were happy with the cf team in Milwakee!!! They all are very nice people, and I can tell that they really care about my Connor. I learned a lot today, and i am getting my 2 year old tested for cf in the next few weeks. When did you say your son was diagnosed? How is he doing now? Can you help me to understand what I should be expecting in the next few years?

 

[2005CFmom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beckyB</b></i>

Can you help me to understand what I should be expecting in the next few years?</end quote></div>

I think this is the most frustrating aspect getting a CF diagnosis. The progession for everyone differs so much, no one can really tell you what it will be like.

My daughter (almost 9) was not diagnosed until last August. She also has the same gene mutation double delta F508. She has always been "petite" but ate like a horse, so she never dropped off the growth chart. She was finally diagnosed after she developed a cough that would not go away.

Glad you found this site.....the people here are a great source of information and support!

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>beckyB</b></i>

I know that it will be hard but I have a positive attitude.</end quote></div>


Becky, That will help you more than anything else! Connor will get his strength from you too. Its going to be tough sometimes, but that's why we're here. We'll help with whatever we can. Its also so important to have faith in your docs.

Best wishes to you!

 

[Jem]

That's great that you feel so good about your son's cf team. That's a big plus. Connor will do well. It will take some to adjust but things will become routine soon enough and hopefully he will continue to respond well to treatment. We are always here for questions, support and whatever you need. I'm still sending prayers your way.<img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Well first of all....I think it is easier when nebs and chest pt are started in infancy. That way by the time they are toddlers they know what is going on and are more used to having to do the treatments and all. So by the time your baby is a toddler it wont be as hard as it seems....although we still have our days when my son does not want to be still for his treatments!!
There is no way to tell how sick anyone with cf will be....everyone is different. As long as he gets his treatments and meds he should do fine. Of course winter is harder because there if so much more stuff going around. My son does not stay sick all the time....hardly ever as a matter of fact. So dont think your son is going to be sick all the time...it's really not like that for most! Anyway I am glad you had a good visit at the doctor....keep up that positive attitude!!

 

[izemmom]

Hi Becky -
I missed your earlier post, but read here that you are from my area - kind of. We are north of Milw. (about 30 min) and we go to Children's. Emily is 7 months old, so we havn't been there too long, but our experience has been good. We love the people at Children's. Do not hesitate to call them with questions. They are wonderful. I would be more that happy to help you out in any way I can...answer questions, share our experience so far...meet you for lunch. YOu name it, you got it! Private message me if you're interested! And hang in there. This is such a hard time. I promise it gets better! You are in the right place. And you can do this! I hope to hear from you!

 

[spicyone18]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

....although we still have our days when my son does not want to be still for his treatments!!

</end quote></div>

Heh, sometimes I dont want to be still to do my treatments and I've been doing them for 23 years! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Ratatosk]

This past week, when we get home from work/school, Max has been telling us that it's time for his treatment. He's getting to be such a big boy.

One thing with CF, even the same gene mutation double delta f508, there are so many different factors and CF progresses at a different rate, different symptoms. Some people aren't diagnosed until they're older, our son was diagnosed a day or so after he was born because of meconium illeus. I remember talking to some parents of older CFers locally and a number of them told me that the first year was horrible -- multiple infections, hospitalizations and then things got better after age 2. I was horrified because we'd already spend almost 2 months in the hospital, I didn't want to go back any time soon -- but those were children who were diagnosed AFTER they'd had numerous infections, failure to thrive etc. Also, our local clinic doesn't stress CPT and nebs for newborns. We were fortunate in that the CF clinic in the City had us starting pretty much at day one -- Max is used to his treatments, sometimes we struggle when he's in the middle of playing something outside and he doesn't want to be interupted.

Liza

 

[anonymous]

Becky:
My son was diagnosed at 6 months. That was a hard pill to swallow - I was 18, not married and didn't even know what CF was. But I was determined to be the best mom I could and to take care of my son to the best of my ability and to give him the best life possible. With the help of my wonderful family we did just that. I don't want to be a downer, but I lost my son 4 months ago. My son was 21 years old but he lived a lot more than most people and was wise beyond his years! He taught everyone that knew him a lot about life!! I miss my son terribly, but when I look back I think the most important thing to remember is keep a positive attitude and teach your child to have positive attitude! Please enjoy every moment with your childeren! Issemmom - I see you are from my area too. Wow 2 people in the same day, usually everyone is from far away. We were also very happy with Childrens Hospital. Who do you see there? If you see Mary Ellen (the nurse practitioner or probably anyone else in the clinic, mention Josh L. he was there alot!)
momofjosh

 

[anonymous]

izemmom:
Sorry, I screwed up the spelling in your name earlier. Hi!
momofjosh

 

[anonymous]

Hey Becky
I know even though you're glad to know what you're fighting it's still a hard time for you. I have three children the youngest two have CF. They are 9 and 14. I just want you to know there are better days ahead. My kids lead a much more 'normal' life than I ever imagined. Our definition of normal is just different that most. Hang in there.

Terri

 

[julie]

Hi becky,

My husband is a Double Delta F 5058 as well. Everyone's CF is so very different, but with all the treatments and medications available today, living a "normal" life is so possible.

My husband was diagnosed at 18 months because of failure to thrive. He's had both lung problems and digestive problems (as well as reproductive), but his digestive problems are more promenant. He's always had a hard time gaining/maintaining weight and just reached his highest weight ever this year (which he is most proud of himself for <img src="i/expressions/face-icon-small-smile.gif" border="0">)!!! He has lung infections, some years are worse than others. So far this year (since jan) he hasn't had any but is on maintenance tobi. That maintenance Tobi just started last year.

He played soccer all throughout school and was very active. Simply didn't let his CF hold him back.

He just graduated from college and we are expecting babies at the end of October.

Just wanted to share wth you the life of another person with CF who has the same mutations as your child.

I didn't post on the topic when you first came to the site, so I just wanted to say my "WELCOME" to you!!!!

 

[anonymous]

Hi Becky
My son also has double delta 508 mutation. He is 9 months old. If you ever need to talk you can email me at donnap13@hotmail.com. I am in Australia so it would be interesting to see what the treatments are like compared to here. Keep your chin up I`m sure your little boy is as special as mine is.

Donna mum to Benjamin 9 months w/c/f