alittleazfamily
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CF guidance/advice
- Thread starter alittleazfamily
- Start date
alittleazfamily
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imported_Momto2
New member
Hon, I hate to break it to you, but your grandson very likely has CF. He tests in the "very possible" range and has very typical symptoms for a youngling. I'd get a full genetic profile and get him to a CF clinic ASAP. I am very sorry to hear about your stepdaughter.
imported_Momto2
New member
Hon, I hate to break it to you, but your grandson very likely has CF. He tests in the "very possible" range and has very typical symptoms for a youngling. I'd get a full genetic profile and get him to a CF clinic ASAP. I am very sorry to hear about your stepdaughter.
AleksandraKaczynska
New member
I'm sorry also ... but in the mean time make sure he gets vaccinations like for flue or pneumokoks and rotawiruses if he hasn't gotten them already.
You can try adding coconut oil to his food or just coconut milk and make sure he gets a rich diet in omega 3, vitamins and salt also. There are also special drinks awailable - nutridrinks. Aslo a high calrie healthy diet with lots of fresh vegetabes. Its also a though one - since he is 4 and may not want to eat that and that - like my 4 year old.
You may also consider using suplements : multivitmins - maybe you can get AquAdeks or other adek vitamins , omega 3 and perhaps probiotics - these things may boost his immune system up and are safe too use - just make sure he gets the right amounts according to age and weight. You may also try extra minerals.
My daughter also takes Flavon Kids and green - which soon also will be awaileble in U.S - hoewevr here doctors are sceptic and those who use it - like me think it works.
Also it might help him to do inhalatons from 0,9% NaCl - saline - i think twice a day from about 4 ml. It won't do harm and might help. Just get a good inha;lator - if its cf he will be needing it also.
You can try adding coconut oil to his food or just coconut milk and make sure he gets a rich diet in omega 3, vitamins and salt also. There are also special drinks awailable - nutridrinks. Aslo a high calrie healthy diet with lots of fresh vegetabes. Its also a though one - since he is 4 and may not want to eat that and that - like my 4 year old.
You may also consider using suplements : multivitmins - maybe you can get AquAdeks or other adek vitamins , omega 3 and perhaps probiotics - these things may boost his immune system up and are safe too use - just make sure he gets the right amounts according to age and weight. You may also try extra minerals.
My daughter also takes Flavon Kids and green - which soon also will be awaileble in U.S - hoewevr here doctors are sceptic and those who use it - like me think it works.
Also it might help him to do inhalatons from 0,9% NaCl - saline - i think twice a day from about 4 ml. It won't do harm and might help. Just get a good inha;lator - if its cf he will be needing it also.
AleksandraKaczynska
New member
I'm sorry also ... but in the mean time make sure he gets vaccinations like for flue or pneumokoks and rotawiruses if he hasn't gotten them already.
You can try adding coconut oil to his food or just coconut milk and make sure he gets a rich diet in omega 3, vitamins and salt also. There are also special drinks awailable - nutridrinks. Aslo a high calrie healthy diet with lots of fresh vegetabes. Its also a though one - since he is 4 and may not want to eat that and that - like my 4 year old.
You may also consider using suplements : multivitmins - maybe you can get AquAdeks or other adek vitamins , omega 3 and perhaps probiotics - these things may boost his immune system up and are safe too use - just make sure he gets the right amounts according to age and weight. You may also try extra minerals.
My daughter also takes Flavon Kids and green - which soon also will be awaileble in U.S - hoewevr here doctors are sceptic and those who use it - like me think it works.
Also it might help him to do inhalatons from 0,9% NaCl - saline - i think twice a day from about 4 ml. It won't do harm and might help. Just get a good inha;lator - if its cf he will be needing it also.
You can try adding coconut oil to his food or just coconut milk and make sure he gets a rich diet in omega 3, vitamins and salt also. There are also special drinks awailable - nutridrinks. Aslo a high calrie healthy diet with lots of fresh vegetabes. Its also a though one - since he is 4 and may not want to eat that and that - like my 4 year old.
You may also consider using suplements : multivitmins - maybe you can get AquAdeks or other adek vitamins , omega 3 and perhaps probiotics - these things may boost his immune system up and are safe too use - just make sure he gets the right amounts according to age and weight. You may also try extra minerals.
My daughter also takes Flavon Kids and green - which soon also will be awaileble in U.S - hoewevr here doctors are sceptic and those who use it - like me think it works.
Also it might help him to do inhalatons from 0,9% NaCl - saline - i think twice a day from about 4 ml. It won't do harm and might help. Just get a good inha;lator - if its cf he will be needing it also.
M
Mommafirst
Guest
The chances if his father is a CF carrier is 50% likely. It would be very important to get all the testing done, because if he does have CF it would be very important to get the right meds so that he can grow well and stay healthy. I know this is an impossible time, I'm so sorry you are all going through this....hang in there.
M
Mommafirst
Guest
The chances if his father is a CF carrier is 50% likely. It would be very important to get all the testing done, because if he does have CF it would be very important to get the right meds so that he can grow well and stay healthy. I know this is an impossible time, I'm so sorry you are all going through this....hang in there.
M
Mommafirst
Guest
A 57 sweat test is practically positive. My daughter has 2 CF genes and had a 54 sweat test. She has CF. Being a carrier can elevate a sweat test, but usually not into the positive range. It seems that the only way to know for sure is to have a full genetic sequencing done to check for a second mutation.
As for overheating....my daughter does not do well in the heat at all. She dehydrates very easilty and we have to be very careful. Gatorade and lots of salt in the summer both are helpful to manage the heat.
As for overheating....my daughter does not do well in the heat at all. She dehydrates very easilty and we have to be very careful. Gatorade and lots of salt in the summer both are helpful to manage the heat.
He needs to be seen at a APPROVED CF CENTER BY AN CF SPECIALIST. He needs to have a FULL CF SEQUENCING. Genetic testing can run from testing for 250 most common mutations to the full sequencing of almost 2000 known mutations.
I will bet that he has only been tested for the most common mutations. Local Doctors are not qualified to dx or treat CF. Tell us where you live and we will help you find a CF CENTER.
Bill
I will bet that he has only been tested for the most common mutations. Local Doctors are not qualified to dx or treat CF. Tell us where you live and we will help you find a CF CENTER.
Bill
ehtansky21
New member
Yes, being out in the heat can make CFers ill. They sweat out so much salt and then their body is even more depleted then usual. We used to live in AZ and unless the boys were in the pool or going from the car to the house, we never went outside during the summer. Definitely get him some good electrolyte drinks and salty foods.
The Phoenix Children's Hospital CF center is very knowledgeble. I am assuming that that is where you are getting the sweat tests at. If not, that is where you should go. It is definitely time to do a full panel Ambry genetic test...to get to the bottom of things!!!
blessings,
missa
The Phoenix Children's Hospital CF center is very knowledgeble. I am assuming that that is where you are getting the sweat tests at. If not, that is where you should go. It is definitely time to do a full panel Ambry genetic test...to get to the bottom of things!!!
blessings,
missa