Worried ...

Discussion in 'The Watercooler' started by shellyd67, Jul 6, 2011.

  1. shellyd67

    shellyd67 Active Member

    As some of you already know, easy child has been diagnosed with a disease of her hip called Ideopathic Chondrolysis.

    It is very rare and in alot of cases prognosis is not very good.

    I am worried sick. I have tried to research this condition and speak with Dr's, Physical Therapists and anyone who will lend an ear. Everyone has the same response.

    This is rare and unexplainable, we know very little about this condition.

    The Ortho Specialist who is treating her informed us that 33% of kids make a full recovery, 33% stay the same and 33% get worse.

    I need to know what worse means, he is so damn vague. I am going to insist he give me statistics and worse case scenarios at our Post Op appointment.

    She is on a CPM machine for 12 hrs a night, she has PT 2 days per week at the Children's Hospital and husband and I do PT with her at home 2x per day.

    Her PT said she will make progress during all the therapy , the true test will be after all therapy and the CPM machine cease.

    She has been incredible thru all of this.

    Things being so vague is just killing me inside.

    I just wish I had some answers ...

    Please keep easy child in your prayers ...

  2. seriously

    seriously New Member

    I am sorry your daughter has developed this condition. It is very hard to live with uncertainty about serious physical health problems. Been there - doing that.

    I did a little research since I am not familiar with this specific condition. It looks to me like the ortho and other docs are being honest with you. They really can't tell you anything more than what they have already said. There are very few cases, not enough for anything more than case studies or reports of 10 -14 children's treatment and results.

    In terms of the medical aspects of diagnosis and treatment, you might ask if the following things have been ruled out:

    juvenile arthritis
    seronegative spondlyoarthropy
    arthro-opthamopathy (Stickler's syndrome)

    Ruling these out may require referrals to other specialists like a rheumatologist.

    There is one very recent case study report from 2009 that reported excellent results from daily use of Entaneracept. Here's a link to the article.


    ntaneracept (Enbrel) is a powerful immune-suppressant normally used to treat rheumatoid arthritis. In this particular case study it was administered by daily injection. I would be surprised if your insurance covered it without an RA or spondlyarthorpy diagnosis and the normal dosing for these diseases would be once a week (rather than daily as reported in this case study).

    It costs in the neighborhood of $400/shot.

    There are no clinical trials for this disorder listed in clinicaltrials.gov but you could ask the doctors about any research studies. You could also contact the company that sells Entaneracept about any treatment protocols they know about for idiopathic chondrolysis and patient assistance programs for Enbrel

    As for the emotional issues of dealing with this -- My best advice is for you to hold firm to the idea that all will be well and treat her as if the physical treatment and limitations she is experiencing now will work and she will be fine.

    More information is not going to give you the reassurance you are seeking. Focus in the present moment and try to find things to be grateful for (like that there is a treatment) and not give in to the anxiety.

    Finding a therapist to talk to is also a good idea in my experience.

  3. shellyd67

    shellyd67 Active Member

    Thank you Seriously for doing all the research. I have been so emotionally distraught that I just cannot wrap my mind around all of this.

    This is one of the reasons I started the thread. A ton of heads is better than one.

    husband and I do have quite a few questions at easy child's post-op appointment and I do think a second opinion is in order being that this can be very serious.

    I need to get myself together I know.

    This has put things into perspective however. Right now, difficult child's issues seem like a cake walk.
  4. gcvmom

    gcvmom Here we go again!

    I'm so sorry about her diagnosis. To help you get through this time, you might check online to see if there are any parent support groups (face-to-face or online) for this specific disorder. I know when difficult child 1 was diagnosis'd with Crohn's I was sick with worry about the long-term consequences of his disease. Much like this board, another online parent group for his specific condition saved my sanity by sharing their base of knowledge and experience and helped me educate myself on the disorder.

    In the mean time, do all you can to learn about the illness -- knowledge is power and it can really help give back a sense of control in a seemingly out-of-control situation. And take life one day at a time!
  5. gcvmom

    gcvmom Here we go again!

    I just realized a friend's niece was diagnosis'd with this disorder a few years ago. I can ask her where her sister in law went for help and if there's anything important she can share.
  6. Shari

    Shari IsItFridayYet?

    I have found writing a letter to my docs to be helpful sometimes, especially in the midst of an emotional issue, and asking all of my questions in that letter. Sometimes I just give it to them and ask for a
    Response in writing, other times I say we can discuss at
    Our appointment.
    I wish I had some answers or you. One day at a time.
  7. shellyd67

    shellyd67 Active Member

    Thanks ladies ! gvcmom, I would appreciate that more than you know. Thank you !
  8. seriously

    seriously New Member

    For a 2nd opinion (always a good idea in MY opinion) I have 2 suggestions.

    1. Contact the doctor who published the case study of the kid on Enbrel. That's the link I posted for you. See if he/she will either do a 2nd opinion consult (in person or long distance records review) or can tell you who in your region he can recommend.

    The world of pediatric specialties is often very small and they know each other at least by reputation. If he says the docs you are already seeing then perhaps that will reassure you some about the quality of care she is getting now.

    2. Apply for care with Shriner's. They provide free care for many orthopedic conditions and I cannot say enough about the quality of the care she would get from Shriner's.

    Here's a link to their Philadelphia location. Fortunately it includes Ortho as one of it's specialties.

  9. gcvmom

    gcvmom Here we go again!

    I was mistaken about friend's niece -- turns out she had Slipped Capital Femoral Epiphysis. They ended up at our local children's hospital -- not sure where in PA you are, but I know CHOP is excellent.

    Seriously's advice is super and I can tell you she's very good at her medical research, lol! I wish I had more to offer -- Good luck to you!
  10. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Keeping your easy child in my prayers.
  11. Hound dog

    Hound dog Nana's are Beautiful

    If it were me, I don't think I'd take something as serious and unusual (rare) without having it confirmed with a 2nd opinion.

    Even though I knew Travis' neuro was a class A doctor and on his toes........when the results for the polycythemia (also rare) came back, we both felt it sound to seek a 2nd opinion. A neuro doesn't specialize in blood disorders. As it is......it can be difficult finding someone who knows what they're doing who DOES specialize in blood disorders.

    You daughter is in my prayers. Fear of the unknown is the worst of all. Yet you're not going to get a doctor to pin it down for you because I'm betting each case is different with different results and degrees of function. That topped with how uncommon it is.......well, he already told you they don't know a whole lot about it.
  12. shellyd67

    shellyd67 Active Member

    I am so glad that I reached out. As I said, many heads are better than one. My head currently is so cloudy with fear and emotion. Your suggestions were excellent SERIOUSLY, THANK YOU !

    No doubt husband and I will get a 2nd opinion. I did review the info for Shriner's Childrens hospital. We use CHOP and it is said to be one of the best. Also AI Dupont/Neumors for Children is said to be excellent.

    I will keep you posted.
  13. lovemysons

    lovemysons Well-Known Member

    Prayers Shelly that you get some answers re this condition and that your easy child's condition will have improved after she is off the machine and PT.

    It can be so hard to see our easy child's especially when they are going through difficult/painful situations. My easy child is the same way with adversity and yet you know there is, there has to be, a degree of fear and concern for themselves...but they tend to put on the "brave face" and don't feel overly sorry for themselves.

    Caring Hugs,
  14. seriously

    seriously New Member

    The thing about Shriner's is that they often have the MOST experience treating rare/unusual cases of any pediatric physicians anywhere. They see kids from all over the globe that no one else sees because their services are free. So if anyone has experience with this condition is it, in my opinion, very likely going to be a Shriner's ortho team.

    That said, it may not be the team in Philadelphia. it might be the one in Toronto or Sacramento or elsewhere. But the Philly team will know who has the most experience. And, at least in our experience, they will sometimes arrange transport for a kid to be seen at a different facility with more experience with an extremely rare condition like this.

    So I really do suggest you at least call them and ask to talk to the Ortho team advice nurse about their experience treating this specific condition.

    Our oldest son has an extremely rare bone disorder and has the most rare form. Shriner's was the only place that had treated these kids.