DD diagnosed, took 4 years to find out!

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Bellithorp

Guest
My daughter was diagnosed with CF with P.A. in the beginning of October 2012. The day of being diagnosed she was immediately hospitalized for 14 days. It took me yelling at her primary doctor to get simple blood test for a possibility after her 8th time having pneumonia. Apparently, since she was born in Texas in 2008 she was a year shy of being mandatory tested for CF at birth. Here in CA, they have yet to do a sweat test or really give me any info or options as to lifestyle choices and how to even order the vest that she will need to be on.

We are all getting used to everything and it has been rough but I feel like I have so many questions that the doctors do not care to answer. I hated the hospital, all the doctors and nurses were so mean and ignored us completely. Honestly, I would switch our plans from Kaiser if I had the finances to do so.


My number one question is this: If my daughter is currently taking enzymes for meals and snacks, (and has sprouted up two sizes since being diagnosed), should I push a high fatty diet? Could it be possible to go vegan or organic/vegetarian? She was a vegan a year before being diagnosed and she was never sick. I know it could just be a huge coincidence but at this point I am so scared and misinformed about everything I am just sticking to what I know best from experience.


I am very scared for my daughter, this is all very new for all of us.

We wake up at 5:30AM on school days just to have enough time to complete all of the breathing treatments she is on and I can not help but to feel bad for her because she is constantly tired from not getting enough sleep.

I have also noticed a HUGE difference in her behavior since the breathing treatments started. She is extremely agitated and angry. She will sit in the corner and hit herself if she feels sad and she has begun to be extremely insecure and self conscious. I don't understand how to help her and why she is even feeling like this since she is only 4! I would say it is possible from her upbringing but we are a very positive and strict family that always gives her love and support.


If anyone has any feedback or answers that would be great. Sorry for the grumbled paragraphs of a lifetime there. I am very weary and tired.
 
R

Ratatosk

Administrator
Staff member
Because of the pancreatic insufficiency, which leads to malabsorbing of fat, she most likely needs more fat in her diet than most people. We supplement with cream, olive oil, nuts. As well as making sure she gets adequate fat soluble vitamins such as A, D & E. As for the breathing treatments -- should take about 10-15 minutes for albuterol nebs, 10-15 for pulmuzyme and about 20-25 for tobi. If it's taking an excessive amount of time, you should check your nebulizer. Also, she can do cpt/vesting while doing her nebs with the exception of an antibiotic. Could be the albuterol is making her agitated. DS' been on it for ever and hasn't had any issues.

DS' vesting and nebbing in the morning takes about an hour when he's on tobi. Half hour of nebbing & vesting, followed by 20-25 minutes of tobi. I get up about 5:45, strap his vest on him and run take a shower. He usually sleeps thru that one. By the time I'm done getting ready it's time for his tobi.
 
J

JENNYC

New member
Yikes, sounds like you are not having a good experience with your dr. I would see about switching dr's if they are not helping you with all of this being new to you. So when she was diagnosed did they send you to a CF specialty clinic? If so they should sit down with you for a very lengthy visit. Our first visit lasted 6 or 7 hours...can't remember for sure it's been so long.. We met with her dr, then her dietician, her social worker, and a child life specialest. Literally there was someone in the room the whole time with us answering questions and going over every detail. It is so overwhelming at first, and if you don't have someone to tell you, it's hard to ask questions because you don't know what you should be asking, so if you're not happy with your dr, I'm sure there is more than that one dr around your area.

One thing we did, was made a special place for her to do her meds, at the time the big thing was v-smile for us, we bought her a v-smile and plenty of games and told her that when she did her medicine this was her treat that she could play anything she wanted. We also bought her things that she liked to do that could be done while sitting still and I swear we bought every new kids movie that ever came out and watched them countless times, but it made her happy. We tried to make her feel as special as possible and the fits went away for the most part. She knew that that was her special time. We have been able to cut a little of the time off of our routine by using an inhaler albuteral instead of the nebbed albuteral. You might ask your dr about that, and she seems less jittery now. The nebbed albuteral always made her jittery which I think aggitated her.

I wish you both the best of luck! And please post whenever you need advice. This is an amazing support group full of wonderful people. :)
 
P

Printer

Active member
JennyC is correct. You need to be going to an APPROVED CF CENTER and seeing a CF SPECIALIST. There you will also see the CF TEAM and all of your questions will be answered.

Bill
 
C

CrisDopher

New member
Bellithorp, I agree with the others and would add a couple of thoughts:

1) You may need to take your daughter to a child therapist for a while. This is a huge change for her, a bizarre change, and once she probably sees doesn't apply to other kids. So she may need a professional's help sorting things out. Mommies are great, but they can't always fix everything.

2) Ply her with high-quality fats as much as she and her enzymes will tolerate, but no more. I personally can't digest fats from cooked cheese or from beef/pork, no matter how many enzymes. But milk fats are well tolerated. As are fatty nuts, cold cheese, and the like. I am fine with vegetable oil, but not olive. This took some experimentation to figure out - just be aware your daughter may not be able to handle ALL kinds of fat. Also, I come to a point with enzymes where they'll cause abdominal pain, no matter how much fat was ingested with them. So again - I've found certain practical limits, despite what any doctor may say.

3) Round, whole nutrition is important. Not just fats. The entire food pyramid is properly balanced and applies to your daughter as much as to anybody else. Don't feed her sugar because "it's more calories".

4) Run her hard. Lots and lots of exercise.

5) But don't deprive her of sleep, either. If she needs to be up at 5:30, she needs to be in bed at 8:30. That was my schedule until college.

You'll get a handle on the nutrition; you'll keep the lung infections at bay. And your daughter will be OK.
 
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