thanks/diagnosis/treatments

[Guest guest]

Thank you again for all the replies,

Luckily for my kids they have already been receiving excellent care.

They all three get IVIG every two weeks to boost the immune system.

They take Creon for the malabsorption ( since they were babies)

they all three have ports for IV antibiotics for all their infections.

funny you mentioned the flutter, we have one for my son. He sleeps

with oxygen, as his SATS go into the 60's at night.

We were originally diagnosed with Ectodermal dysplasia when they were

small then they changed it to a mitochondial disorder. The doctors

say they still have a mitochondrial disorder just secondary to the CF.

I actually found several articles on Pubmed that site mito as a

secondary to CF.

again, I am so glad to have all of you

Hugs,