Just diagnosed - Questions

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Crissy

New member
My husband and I found out today that our 18 month old daughter has CF. We suspected this for a while because she is so small and has about 6 bowel movements a day. However, she hasn't really had any lung problems - just a couple of episodes of wheezing. THe only reason our doctor tested her is because I am pregnant now and my ob did the carrier testing on my husband and I. We both carried the delta F508 gene. I have so many questions. I know that each person is different, but if you could answer my questions based on your experiences, it would be so helpful.
1. How often is your child sick and to what degree?
2. Once your child was put on enzymes, did their bowel movements become less frequent?
3. Does anyone know if the echogenic bowel only shows up on ultrasounds of baby who will experience meconimum illiness (I have no idea how to spell that!). We had an ultrasound done of our baby yesterday, and the doctor did not notice it.
Thanks a lot!
 
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anonymous

New member
Hi Crissy
My daughter had and Echogenic bowel on her scan but was born without meconimum illius (spelling?). My daughter Zara also had lots of dirty nappies before she was diagnosed. But once the enzymes were startd she only pooped 2-3 times a day! Although still only 5 months old she is full of life and smiles.

Good Luck

Jane (Northern Ireland, UK)<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Crissy,

My daughter was diagnosed when she was 18 months as well. She is 5 now... My daughter has had 5 cold bugs now and got through them all just fine. She use to have about 10 bowel movenments aday before the enzymes. CF effects everyone diffrently... My daughter has been doing great! She has her physio twice a day .... her meds as well... and she is doing great.... All the best to you and your family.

Kitt
 
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JoAnn

New member
Hi Crissy - my son was dx at 18 mos also. He also has Delta F508 from both parents. The frequency and degree to which each cf child gets sick is quite different for each child. My son has allergies and asthma also so the type of sick he gets is usu. sinus related and asthma related. He really hasn't had much lung involvement. Prior to dx. he had 10-12 bm a day. Once on enzymes, that changed. He is now 7 and has usu. 1 bm a day. Please continue to ask any questions. This is a great place to get support. Best Wishes.
 
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anonymous

New member
Hi Crissy,
Your situation sounds like ours. Our son was diagnosed at 18 months also. He had one episode of wheezing at about 5 months, and he had a lot of bowel movements, so the NP thought we should test him. He is also DF508, and is doing really well. He is now 3, a little on the small side but he has been extremely healthy. I stay home with him, and do not take him to a lot of places where he could be exposed to germs. He has an older sister who is in first grade and brings enough stuff home with her.
I know that this is a very scary time for you, but things will get better. I promise. Feel free to e-mail me if you have any questions, or if you need to vent. I have been there, and am doing fine now.

<img src="i/expressions/heart.gif" border="0">
Kelly
[E=]KellyBrancoli@sbcglobal.net[/E]
 
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anonymous

New member
Hi Crissy,

This must be a difficult time for you. I found when my older daughter was diagnosed I went through a period of sadness. Once I realized that I was capable of caring for her and able to keep her healthy I started enjoying her babyhood. She was diagnosed at birth having had meconium ileus (she did present with an echogenic bowel at 20 week ultrasound). When I was pregnant with my second, she too had an echogenic bowel at the 20 week ultrasound however my OB said it may be nothing or could be due to other things not necessarily meconium ileus and CF. My second daughter did have meconium ileus and CF, but according to my OB, it doesn't always turn out that way so try to stay positive.

To answer your other questions, yes, she did have less bowel movements once she started on enzymes (we had to wait for test results so she wasn't on enzymes for a few weeks).

As for illnesses, both my girls do their treatments as required and we NEVER miss. They take their enzymes and vitamins and other than that lead very NORMAL lives. They rarely get sick, maybe 1-2 colds throughout the winter and always clear up nicely with extra meds in their nebulizers. They are active, fun-loving girls. They participate in music lessons, gymnastics, skating, storytime, swimming and my older daughter has started junior kindergarten!

You will be surprised at how normal everything will be once you get used to it in your daily schedule.

Best of luck as your family works your way through this diagnosis. This board can be a great source of support as we are all in the same boat! Enjoy the remainder of your pregnancy!

Tammy
(mommy of 2 beautiful girls with CF)
 
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Crissy

New member
Thanks everyone for your help. The more I read, the better I feel about it. I definitely would like my daughter to be healthy, but there are a lot worse things she could have! I do have another question. I have heard a lot about the vest, but I don't understand what it does. Also, isn't there also a mannual way to do what the vest does? If so, how do you do that? Our appointment with the pulmonologist isn't until Monday, so I can't ask these questions yet!

Thanks,
Crissy
 
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anonymous

New member
Hi Crissy,

This must be such a difficult time for you. I remember how my husband and I felt when our youngest son was diagnosed with cf. We have since done so much reading and research and honestly have so much hope for our son's future. As far as your questions, my son has had a really good year (he is almost 5). He's probably been sick (mostly with colds) about every other month, but has gotten over them fairly quickly - some even w/o antibiotics. When he started enzymes, he immediately began putting weight on and yes, his stools were less frequent. They were even less frequent even more after he was potty trained. We don't have experience with echogenic bowel/meconium illius. Feel free to email me if you have more questions. Hang in there - it's a huge adjustment period for you right now. Things will look up. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey
Bono40@aol.com
 
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anonymous

New member
Hi Crissy

My daughter was diagnosed with CF at birth, she is now 8 years old, actually she will be 9 in a few more weeks. Kait has been hospitalized 4 times in her 9 years and that is including birth. Kait is normally pretty healthy and has really good PFT's ( lung function )sometimes has her problems with pneumonia but gets over it fairly quick with antibiotics.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
Also Kait normally has 1-2 bowel movements a day!!!! we did go through a spell when she used to feed them to our dog because she was so sick of applesauce and puddings. Thank Goodness she can finally swallow her enzymes with no problem!!!!

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
Hi Crissy -

I know this is a difficult time. My 11 year old daughter was diagnosed 2 1/2 years ago and she also has 2 copies of the delta F508. During the last 2 1/2 year, she's been on IV antibiotics 3 times and hospitalized twice. The doctors monitor her lung function and if they are unable to turn things around with oral antibiotics, then they send her in for IV antibiotics (which may be administered at home) and possibly a bronchoscopy to see what bacteria she's fighting. Her bowel movements improved immediately after starting with the enzymes but she's always struggling with her weight and is on a high fat/high calorie diet. She even takes a snack break mid morning at school.

As for airway clearance, I don't know whether the Vest is an option for an 18 month old. My daughter has about 3 options and we've been told they are all equally effective. There's Chest PT (manually clapping on her chest and back - see www.cystic-l.org/handbook/html/physical_therapy.htm), the Vest, and the acapella/flutter. The Vest fills with air and then vibrates. See www.thevest.com. The acapella and flutter are small handheld devices. They cause the air in her lungs to vibrate as she blows in. All are used to loosen the mucus in her lungs. My daughter does the Acapella in the morning and Vest in the evening.

Fortunately, the doctors did not hit her with everything all at once. She currently does airway clearance twice a day, nebulizer 3 times a day, Advair (inhaler) twice a day, and takes a total of 24 pills per day (including enzymes, iron, prilosec, vitamins, antibiotics, etc.) Having said that, I should tell you that she appears to be a perfectly healthy 5th grader. She plays soccer, swims on our local swim team, takes horseback riding lessons and dance lessons, plays the flute, etc.

Once you get settled into a routine, I would definitely recommend getting involved in fundraising with your local CFF chapter (see www.cff.org). It's very therapeutic and the other CF Moms and Dads are great support.

I apologize if I went in to too much detail but I know when my daughter was diagnosed and we were waiting for her first appointment, I wanted to get as much information as possible. Take care,

Heather
 
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