My faith has been restored

Discussion in 'The Watercooler' started by shellyd67, Jul 13, 2011.

  1. shellyd67

    shellyd67 Active Member

    Gosh, I haven't really posted about difficult child in so long. But a quick update, he is doing very well on his new medication Vyvanse. He is growing up and maturing and I am quite proud of him right now (lol).

    Anyhow, on to my story. easy child was diagnosed with a very rare orthopedic disorder back at the end of June so our days and nights are just filled up with treatments and trying to get her to make an full recovery.

    You see, she has lost some range of motion in her hip and may never gain it back, infact it may even get worse ? But we no NOTHING about this disease. Their is so darn little info on it.

    While my emotions were clouding my judgement, I reached out on this forum and many of you gave me some great advice and SERIOUSLY just summed everthing up for me and put me on the right track of who to reach out to what hospital specialized in orthopedic disorders, etc. She was even kind enough to post the link for me.

    I reached out to a Dr. I found on the internet who participated in a clinical drug trial that treats easy child's disease. She contacted me in less than a week from my intial letter, and told me she was a student at Brown University at the time of the study and she really is that much of an expert on it but contacted the Professor/Ortho Specialist who headed the study and gave him a copy of my letter and informed me he is waiting to hear from me.

    I have a new found faith ! I have had so many people tell me not to get my hopes up, that Dr's are sued so often these days that she will not respond. WELL SHE DID ! She couldn't help me but she know someone who is willing to help my easy child. Her letter was just so sweet and she wished easy child well and informed us how the Dr. I am now reaching out to has made some ground breaking discoveries in Orthopedic disorders.

    I look more than forward to hear back from him.

    Just wanted to share some possible good news for a change.
  2. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Shelly..I dont know anything about what your easy child has but my son Cory has a very rare condition that needed surgery at age 4 and Duke is where we went because of their Ortho program. It is superb. I would highly recommend contacting them for an opinion too just in case. They were wonderful with him.
  3. PatriotsGirl

    PatriotsGirl Guest

    I am so sorry to hear about easy child!! Sounds like incredible news with the doctor - please keep us updated...
  4. HaoZi

    HaoZi Guest

    Great news on your difficult child and I hope the docs are able to help easy child.
  5. Mattsmom277

    Mattsmom277 Active Member

    Glad faith is restored and I hope this new avenue of exploration leads to something positive for your easy child and treatment.
  6. shellyd67

    shellyd67 Active Member

    Thanks everyone. I emailed the Ortho Specialist last night and I am still waiting to hear back from him.

    Janet, I did apply to Shriner's Hospital which is well known for treating children with rare orthopedic disorders. I am also still waiting to hear back from them.

    I will look into Duke however, you can never have too much info or assistance when it comes to things of this nature.

    I will update as soon as I know something. Thanks again !
  7. DDD

    DDD Well-Known Member

    Great update. So glad that things are improving and there's reason to hope they will get even better. DDD
  8. Jody

    Jody Active Member

    I am so glad that you received a call back regarding easy child's care. That is really good news. I am glad that your difficult child is doing well, I am sure it helps while you go thru these issues with easy child. Hang in there and keep doing what your doing, sounds like you are a warrior mom and will get the right treatment for her.
  9. Star*

    Star* call 911

    WONDERFUL UPDATE SHELLY!!!!! And how is the MOM doing?????? Hmmmmm?

    Hugs & Love Star
  10. shellyd67

    shellyd67 Active Member

    Awww thanx for caring Starbie ! I am doing really well. The surgery was a piece of cake and I healed quickly. My husband and parents were here 24/7 to take care of the kids, house, laundry, cooking etc... It was nice to have a break (lol)

    I am feeling way more like myself and the stress and anxiety has slowed down considerably with my easy child's issues. We met with her Dr yesterday and really sat him down and asked him the worst case scenario of her condition. He informed us it was a hip replacement at the very worst.

    I am resting easy that it will not be some of the other scenarios I concocted while awaiting this appointment.

    My easy child is really an awesome kid with a beautiful spirit. Her Dr. even commented that he feels she is doing so well because of her postive attitude.

    Anyhow, husband the kids and I are heading down the beach to our summer home (which is brand new and we only used once because of all our health issues)

    Really need some time away from it all !!!

    Have a great weekend and what's the latest on the ugliest grill contest ? Shelly
  11. TerryJ2

    TerryJ2 Well-Known Member

    VERY good! What a great note, and promising results from the contact, Shelly. Please let us know how it works out. And I'm so glad you are doing well, too.
  12. shellyd67

    shellyd67 Active Member

    I received an email from the Specialist who headed up the drug trial for easy child's disease Idiopathic Chondrolysis, he used quite a bit of medical jargon I did not comprehend and gave me some info to take back to easy child's doctor's about some sort of enzyme block.

    Something quite disturbing that he mentioned in the email was that he treated a 12 year old boy over 5 years ago and he responded well to the medications and has had no further issues since.

    However, he just received word that the boys brother has now been diagnosed with the disease. This to me shows a genetic link.

    With all our research, never have we found anything on siblings or even cousins being diagnosed. We did find out that only 42 cases have been reported since 1989. WOWSY !

    I hope to hear from Shriner's soon. I would like to get the ball rolling with a second opinion, time is of the essence ...

    Have a very nice weekend all !!!