Update on Skylar 8-31-13

I have a few emails asking if I would stop by an update on Skylar. As of  now, we are still not 100% with any diagnosis yet.  She has appts with another neurologist, a hematologist, a rheumatologist, a gastroenterologist and hepatologist.
 
She has abnormal findings in her blood, one we know for sure is Giant platelet syndrome. She has clotting issues and brusies easily. Her liver tests were also abnormal.
 
She is seeing these specialists to get final word on what type of blood disorder they think she has, what type of autonomic nuerological disorder she has, confirm or rule out lupus(her blood work was positive in some areas for lupus) and and fibromyalgia. And last her digestive problems some how tie into all of this as well.
 
Ultimately Skylar could end up needing a bone marrow transplant as this is the only cure for some of the blood disorders.....other blood disorders, there is no cure.   
She has ALOT of appts and testing in September. She is now on Medicaid through the texas medically needy program as I said before. She will also start getting disability benefits as well as home health services. We have her in certain treatment tracks now that keep her symptoms under control, meaning the pain she feels 24/7 is a more manageable pain. She has appts 2-4 times weekly with local doctors and monthly with the specialists at the childrens hospital. THis right now keeps things at an ok enough level that she is able to stay out of the hospital and attend school. We are very close to answers finally on this, so far, 5 month journey.
Thank you all for keeping Skylar in your prayers, she needs them!!

Thanks so much for updating us on Skylar. Praying that she wont have a blood disorder.....and that she wont need a bone marrow transplant. This poor kid, has been through enough!! How about your other daughter? Im not sure, but I thought you were saying that Calysta is now showing some of the same symptoms? At any rate....praying for your girls!!!     

Thank you for the update :) I'm so happy they are finally able to manage the pain so she can live a more normal life and enjoy normal activities! Think about you guys often and will continue to pray ;)

Thank you all for the prayers! Yes we were concerned that our middle daughter kalysta was showing similar symptoms. She has been diagnosed with scoliosis and her headaches were related to that mainly. She sees a chiro regularly now and this has made a big difference for her. She is doing well now.

Again thanks so much for the continued thoughts and prayers for Skylar and the rest of us, they are appreciated!  

Thanks so much for letting us know about your other little or not so little one :) Glad to hear it was something easily fixable!

Thanks for the update on Skylar. My prayer group asked me how she was doing. We will continue to keep her and your whole family in our prayers.      

Did they research to see if anything in home environment contributes to immune deficiencies? (Since second child has been showing symptoms).

keep the faith, one day at a time...

hugssssssssssssss

Glad to hear it was somthing that could be fixed sending prayers  

thank for the update, all your family will remain in my prayers

Continuing to pray for Skylar. Thank-you for the update. It is a relief to hear you may be getting answers.

Any new news? How is she doing?

Hi, She is still the same. She has good days and bad days but still waiting for hematology tests to get finished.