Friday, May 22, 2009

Lillie Girls EE update!!


After a week or 2 of calling doctors and making allergy apts and getting procedures scheduled for Lillie to check her EE I must say a squeaky wheel does get oiled(a mommy being a advocate for her baby) things start to happen lol:)So hear is whats been going on at the Doctors office at the Brazils home :)Lille has a apt to get tested for more food allergies and if we find her to be allergic to any of the foods we test her for well we will have to remove those as well out of her diet. :( she also has a apt to be put under and have her esophagus scoped for the level of eosinophils and of the stomach! they both will be biopsied! This is something that will have to be done every 2-3 months to help manage her EE.
I talked to Lillies Gastro doctor yesterday for 45 min!I expressed to her my thoughts of this eosinophilc esaphagitis being her diagnoses and that I believe this is what has caused her failure to thrive since birth! Lillies gastro doc agreed completely!She had also shared that Lillie is one of several patients of hers with EE and Lillie is in fact the worst of all her patients with EE and that Lillie has a high level of white blood cells(eosiniphils)attacking the good stuff for her body in her foods she is allergic to!Lillies diet is limited do to allergies of these foods ! all dairy, all nuts, all fish, soy, sunflower, wheat, beef, lamb we will find out if there are more in the next week or two:( The foods she is allergic to cannot be any of the foods she eats and that's not easy because really they are in alot of foods we eat everyday!I have been feeding her fruits and veggys and I found some others she could eat like beans:) without those ingredients!Lillies GI doctor changed her formula to amino based formula due to her formula now that she has been on since 3 months has soy,milk,sunflower in it:( I actually looked a week ago and called asking what to do about this formula!Lillie is also being put on a med that will coat her throat so she is not in as much pain when swallowing.If her swallowing does not improve after a month or so ,Lillie will need to see a feeding specialist to help her out with swallowing her foods!I think she has developed a complex for swallowing this way and doesn't know any other way to swallow due to pain!Other then all of the new updates I pray all have a blessed weekend!we will see what God has in store for us:)I will keep you posted the best I can!

3 comments:

Mooing Joyfully said...

Your testimony is so beautiful in sharing how God is using all these things to draw you closer to him. I will be praying for Lillie's up coming doctor visits. Thank you for the update.
Heb. 4:14-16
14 Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. 15 For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. 16 Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.

For His Glory said...

Crystal! I am so glad to hear the dr is moving on it even though you are the one who diagnosed her (too bad you don't get the same salary~ha ha) I feel bad because I forgot to call you back that night and then with all of life, I have barely been able to remember anything!! This forgetfulness shouldn't last tooo long I promise! I have a phone call to make up to you! Love ya~

clmichel said...

Thanks for commenting on My blog. That is the entire Reason I have a blog. I found reading other EE mothers blogs were helpful to me so I figured I should have one for others to read also. My email is clmichel_2 at hotmail if you would like to chat anytime or discuss treatments or clinics. Good luck to you and your family.