June 11, 2009,
J.B. asks from Fort Stewart, GA on June 09, 2009
I was wondering if there was anyone with a child with Turner's Syndrome. I have a 5 month old daughter who has this and other problems, such as: cystic hygroma of the neck, g-tube in stomache, had heart surgery and cleft pallet. I am a young mother and just moved down here with no experience. She truely is a miracle, doctors told me NO chance of living. She was born a month early on Christmas Eve! Just want some advice... :)
1 mom found this helpful
S.G. answers from Savannah on June 11, 2009
Here are some resources you can tap into to help you in your new area. Military onc source is a great way to find DRs, play groups and just general info about anything and it is for active duty military and their families and is free of charge!! http://www.militaryonesource.com/home.aspx?MRole=&Bra...=
Second, if you don't have your daughter signed up with her PCM yet, do so now and get a referal for a ped in the area that specialize in Turner's. You can also call Tricare and find out what they can do to help you establish a plan of care to meet her needs.
Do you have her on the EFMP yet? If not, get that done ASAP because that will also open doors for her care, child care respit for you and other things as well. It will also limit you as to where you can deploy as a family because they can only station you where your child's medical needs will be met. But that doesn't mean they can't deploy your hubby by himself! There is also ECHO that picks up where EFMP and Tricare fall behind in picking up the tab so you don't have out of pocket expenses on medical bills.
If you aren't sure where to start at your new location, try to find out who your FRG (family readiness person is) or go to the MTF (medical treatment facility) or see what info Military one source can give you.
Good luck and welcome to the south!
K.B. answers from Spartanburg on June 09, 2009
I don't have any information for you but just wanted to say you are in my prayers! God will give you strength and guide you to find the answers you seek if you follow his leading. These ladies that are part of this a great and I pry someone will know just what you need or be able to give you a lead in that direction. Bless you!
L.C. answers from Atlanta on June 10, 2009
My daughter is Turner's mosaic and is 11. I can certainly tell you of my experience and answer specific questions. She has a heart defect and other misc. medical issues. Email me privately at ____@____.com and we can discuss specifics. Take care - L.
V.V. answers from Savannah on June 10, 2009
I have a beautiful 15 year old "Classic" Turner's Syndrome daughter. Where do you live...just general area?
S.P. answers from Charleston on June 10, 2009
I am in Charleston, SC and my first daughter was born with a rare condition and syndrome that unfortunately, in her case, caused her to lose her life before one year old so I understand the struggles of getting a scary diagnosis with a new infant. First, through your hospital or doctor you should be able to access information for support groups in your area and also federal/state programs that can help financially with medical needs now and going forward. She should qualify for several programs regardless of your income such as WIC, Medicaid and Social Security/disability. That last one can be a long process and require you to reapply a few times due to the fact that they reject almost all cases initially as a standard practice. Keep with it and you DO NOT need a lawyer to appeal being denied SSI/disability the first few times all you have to do it reapply and give updated medical info. You will also be connected with early intervention programs that can help your daughter progress beyond what she may without extra assistance. Develop a good relationship with the doctors and your local children's hospital as you will be dealing with these folks on a regular basis for at least the first few years of her life. Be patient with the doctor's but at the same time remember that all decisions about her care and treatments are in your hands and you are the final decision maker. Don't let anyone EVER make you feel like you can't make the correct choice or feel pressured to go against your gut feeling on anything concerning her. Keep your options open to alternative therapies also like chiropractic and natural remedies because too often children with complex medical needs end up on so many meds that the side effects sometimes make life harder than living with the condition they are supposed to treat. Last, and most important, LOVE her everyday and take time to cater to her especially as an infant. She needs her mom to help her feel loved and secure and she will feel secure and comfortable with herself as she grows up knowing that her mom and family loves her just how she is.
L.Z. answers from Atlanta on June 10, 2009
I'm sorry to hear your daughter has had to go though all that, and I hope things get easier for her.
My friend's daughter has Turner's, although she did not have the other medical challenges your daughter does. She's been seeing an endocrinologist, and at 7 is only slightly shorter than her peers. She is bright and funny, and doing well. She gets regular hormone shots. I have heard that the Emory Clinic has a great endo.