Josh: more test results

[bmombtoo]

Hi everyone,<br>
Just an update on Josh. The CF nurse called today; she said the
mutation screen was negative and that his doc is on vacation. She
will call when she gets back and will most likely do a nasal
differential. I asked her about more mutation screening and she
said it would probably be helpful and suggested I butter up the
insurance company to let Quest labs do the testing.<br>
<br>
Also he is vitamin D deficient and the nurse said that see this a
lot in CF kids. Any body heard of this? They are starting him on a
RX supplement.<br>
<br>
Thanks all!!!!

 

[Alyssa]

I sent you a PM from one of the other posts that you were telling another person about your situation. Your post here answered one of my questions.

Yes, I would really push for the full genetic testing -- seems to me to be a waste of time checking for just a few.

I don't know for sure about the vit D deficiency, but it sounds believable

Did anyone explain the nasal differential test to you? It is not the most pleasant test -- I think you mentioned your son is 12 years old? That's good cuz it does involve a small needle in the arm and tubes up the nose and I believe water dripping back out of the nose -- all of this for something like 15 minutes or so. May still be worth it though - our doc explained it to us but we never went through with it - he did say it can be very beneficial in getting a diagnosis in people that they cannot identify the genes in and it isn't available everywhere, so if you can get it done near you, consider yourself lucky

 

[Allisa35]

I think a lot of cf patients with the digestive problems have trouble absorbing some vitamins. My docs always push me to take the ADEK vitamins and multiple vitamins (which I do). I think these are the major vitamins that we have problems with.

Good luck with the testing. I hope your insurance will cover it.

 

[julie]

Vitamin deficiencies are VERY common with CFers. The most common being vit. D and E

I second Alyssa and recommend the Quest testing. Keep us posted and have fun with the ins. company <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[letefk]

My oldest was deficient in vitamin D at her first screening.
 They also said that it is very common.  Since hers was
minor, they let us try to adjust the levels through diet.
 Josh's levels were probably lower, so they may be using the
Rx to quickly raise the levels, or control the levels so they can
see how well he can absorb it.<br>
<br>
I would not worry too much about this.  While vitamin
deficiencies are serious in the long term if uncorrected, they are
very good at managing this aspect.

 

[JRPandTJP]

My son was also vitamin deficient before diagnosis. He first had vitamin K deficiencies, then zinc (causing rash on most of his body) and protein deficient as well. Without enzymes they are not able to absorb fat soluable vitamins ADEK. This is why they always prescribe a special vitamin to make sure they get enough. I'd say start him on it a good multi if he isn't on one already. Also, can they try enzymes while you are waiting to be diagnosed? THey gave Ben Creon 5 right away while we were waiting. It won't hurt him and could help with digestion immediately. Worth asking.

Probiotics help with vitamin absorbency. Culterele is a good one found at most drug stores or pharmacies (1 cap daily).


Hang in there...I remember the waiting and it is really hard.

Jody

 

[karon72]

Erin has been low on vitamin E twice and had to take a RX for that. They also recommended she go outside for at least 15 minutes per day without sunscreen to help with her low levels of vitamin D. They weren't low enough for a RX. This was during the winter and it seemed to be better in the spring/summer months...cold be a coincidence <img src="i/expressions/face-icon-small-smile.gif" border="0">

Good luck with your insurance & testing!

 

[Ratatosk]

DS's doctor has had him on ADEKs since he was a couple days old, vitamin K once a week because for some reason ADEKs is short on the amount needed for cfers. Plus a drop of vitamin e and vitamin A in his formula, not chocolate milk once a day. L