Grandson diagnosed with CF through Newborn Screening

[imported_Momto2]

mom25kids, smile sweetly at your friends and inform them that the very fact of being born is in itself a death sentence. Come on, thats the best they can support you?!!? *hug* I'm 40, two kids, married 15 years, two advanced degrees, a terrific husband and have done everything from marine bio research in belize to making it to the national championships in equestrian sports. CF is not a death sentence, but it WILL help a person to make a choice on how they want to LIVE their life. Anyone can get hit my a car crossing the street at anytime. Tell your daughter the best thing she can do for her son is to do her very best with his medical care and support/encourage him in his endeavors. And better medical advances are being made every year, so you give that wonderful new baby a great big hug from all of us and focus on what an amazing person he can be, not the negative aspect of a small portion of his DNA. Every kid has their challenges, be it immediately obvious, or comes up later in life. : )

 

[mom25kids]

Hello again,

Thanks for all the experience that is here....so helpful. Everyone makes such excellent points about dealing with this illness. I'm anxious to go to the next appointment to see if he as gained weight.

We are using the little plunger to do the tapping on his lungs.....it is very useful. Therapist said to hit it hard enough to make his little cheeks shake, so that is what we have been doing.

My daughter has been doing much better....and I question her everyday about what she has complete in regards to his treatment. She is really doing well and is remembering everything she needs to do. It's a little difficult to half that capsule of enzymes...I'll be glad when he gets the whole capsule....those little suckers role everywhere; I would accept any ideas for controlling those things.

 

[Ratatosk]

When DS was a baby I'd find enzyme beads and sometimes the capsule casings everywhere. I found that baby bananas were stickier and held the enzymes better. Also, because DS was on 3 1/2 capsules, I would measure out several doses at a time and keep them in one of those weekly pill dispensers. Mainly for the late night or early morning feedings, so all I would have to do was pop the lid and pour onto the baby spoon rather than mess with capsules in my sleep deprived state. Not too many at a time, but just enough for a few meals and snacks.

I also kept oral syringes with his daily meds in a baggy in the fridge -- vitamins, antibiotics... Would draw them up once a day, so I wouldn't have to do it each time.

We started off using the little cups, but had the RTs show us how to use our fingers for CPT.

 

[Aboveallislove]

I'm so glad that things are going so well. You must be so proud of your daughter!!

Re the enzymes-1) what I did; 2) what I wish I did:

1) I would use little cupcake papers and put a bunch out on a plate and then dump one enzyme in one and then use a metal spoon (like adult eating teaspoon) and count and then take out half and put into another cupcake paper. I'd do like 10 at a time and then put plastic wrap over so they were there and ready to use.
2) After DS was older, he would be prescribed 2.5 enzymes and at this point I was just splitting them in the applesause (actually prunes b/c DS only likes prunes for a puree--I know mix other fruit/veggies to get him more variety of vitamins). So what I do now and wish I did when he was younger is get a big spoonful (like an adult eating tablespoon full of prunes (for you applesauce), and in the big spoonful dump the entire enzme on the spoon and then with another (baby) spoon, I'd just scoop up half and give him it and throw the rest away. DO NOT USE THE SECOND half--once its in the food it needs to be taken within 10 minutes or so. Seems wasteful, but he never takes as many enzmes as are prescribe for him based on 3 meals/2 snacks b/c he doesn't usually eat more than 3 times a day b/c he likes to pig out!

 

[Aboveallislove]

PS At our second appointment the nutritionist said "you aren't counting those are you?" Thus, the eyeball in the applesauce should be fine--you can always error on the side of fewer/more depending on the dosing--ask the doctor if he is at the minimum/middle/maximum range for the dosing next visit, but honestly you'll only be off a couple at most.

 

[GrammyB]

I am a grandmother to a little girl who is almost 6 with CF. I don't have anything to contribute here, but I just find this thread so thoughtful and compassionate to this new mother and grandmother. You all are such a great group to take the time to answer all of their questions so thoroughly. You're all wonderful!

 

[mom25kids]

Hello everyone,
Update on baby Jaiden....in two weeks, he went from 7 lbs 7 oz to a whopping 9 lbs.....wow, we are so blessed. Those enzymes are a miracle from God.....I can't believe how filled out he has become.....and he is starting to cooh....so sweet.
He got another sweat test and blood work done....everything came back good and of course the sweat test showed CF...which they expected. He still has to do yet another one at the next visit. They also did a swab of his throat and they told us it would be done at each visit....to check for bacteria.
I asked doctor about why we aren't starting preventative breathing treatments and why just for "as needed". She almost seemed bothered that I was questioning her....and then told me that it was not the recommendation to start the treatments until it is needed.....so I guess we just wait for the first cough.
Emotionally....we are doing better around here....Hannah has a few weak moments of questioning why....but I remind her of the words and advice spoken on this site.

 

[AleksandraKaczynska]

Great news.
Believe me... it's a blessing there is is screening now.
Propobly you are not told to do CPT cause in such little babies there is high risk of reflux.
Good to see you're doing so good. Keep it up - you're a super grandmother and mother <img src="i/expressions/face-icon-small-wink.gif" border="0">
the thraot swabs will be and should be done regulary - also - always - before giving antibiotics - best to do them in a cf center cause it all depends on the lab you do the test in.

 

[Aboveallislove]

I'm so glad things are going better around that. And it is totally natural for Hannah to have "lots" of weak moments--we all do. She must be such an amazing person to be doing so well and you must be so very proud of her.

You might want to check out the string on "should we be doing breathing treatments" under the "family" tab. From my understanding you ARE doing percussions, so it isn't a concern re acid reflux (which our center addresses by having the tabs 1 hour after eating and only certain positions to prevent acid reflux). I feel pretty strongly on proactive breathing treatments, but this is something your daughter obviously need to decide with the baby's doctor, but you might want to read others takes as well (as well as how other Centers are handling it). You might consider also asking if the Center takes the perspective that they only do breathing treatments "as needed" or if some doctors at the Center start right away. (I know that some CFers don't have alot of lung involvement, but with ddf508, the lungs will eventually be involved.) Hopefully you'll have a good relationship with your doctor where she/he can answer questions without feeling challenged. Does anyone know if the CFF has guidelines breathing treatments?

Oh, and GREAT job on the weight!!!!

 

[TarHeelBlue2007]

Posts above say pretty much it all...nothing is written in stone for CF these days. Docs told my parents I wouldn't live past 21. I'm 27yo, working on a PhD, and this past spring I finished my second Half-Ironman Triathlon. The very fact that Mom25Kids is on this forum shows that she cares and is seeking support, and together we'll all conquer CF.

 

[TarHeelBlue2007]

<ignore this, I messed up and posted twice>