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Thread: Not the news we were hoping for or expecting

  1. #46
    Join Date
    Mar 2011
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    The next school break is summer break. Plus with his arts classes, they cannot make up what they miss. His curve grew 6* since March 7th. I am really just losing it. If he loses his school too because of this, I just do not know what I will do. I have calls in to the school trying to work something out, but county rules say they must attend during the first week or they are removed from the roles and he will have to wait a year to audition again.

  2. #47
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    Mar 2009
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    Why don't you try the suggestion of littlebird and see if you can get into the St. Louis Shriners? They have Dr. Lenke on staff there, whoo hoo! Maybe they could get your son in earlier.

  3. #48
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    Jan 2008
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    Quote Originally Posted by LokanasDad View Post
    The next school break is summer break. Plus with his arts classes, they cannot make up what they miss. His curve grew 6* since March 7th. I am really just losing it. If he loses his school too because of this, I just do not know what I will do. I have calls in to the school trying to work something out, but county rules say they must attend during the first week or they are removed from the roles and he will have to wait a year to audition again.
    I would try to elevate that. It is wrong to gig your son for needing surgery.

    The 5o* and the 56* were measured by different surgeons. There is a +/- 10* spread on that so the curve may or may not have progressed. There is at least a 6* spread on the SAME radiographs between the radiologist and our surgeon. I'm just saying.

    Your son is in the low-mid 50* range and I am not sure any surgeon has accurately quantified his progression rate. I am suggesting you might have some room to work this problem so that your son doesn't miss out on attending the magnet school.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #49
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    Oct 2008
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    299
    Sounds like he currently scheduled at a time when he's going to end up missing a lot of school anyway, so maybe you could push the surgery for 2-3 weeks, he'll attend school the first week and be in compliance with the county rules? Not ideal because he has to miss the beginning weeks of school but would avoid losing his place there and his surgery wouldn't be delayed too much...hope you can work it out
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  5. #50
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    Does he have to attend all the classes that first week? Maybe if he shows up for five minutes for the first class each day he won't lose his slot. Find out the technicalities of the rule. If they are unclear or can be construed in a different way then take advantage of that. He will be at home recovering most likely and it will be hard to get to school even for five minutes but it might be worth it if is saves his slot.

    But really, the answer is to elevate it I think. Just ain't right.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #51
    Join Date
    Mar 2011
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    52
    The biggest reason not to look at St. Louis is that it is so far away from Florida. If I was going to try a different Shriners, I would be looking at Tampa, but that one is like Nemours here, no real help with the other two kids. I have to work, which means that my wife will need family help with the other two this summer.

    My wife went in and talked to the VP of the school. She said that they would excuse him from the requirement of one week if he had a DR's excuse on file before start of school year. My daughters, however, would still need to be back by start of school. So we are still trying to figure it out.

  7. #52
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    Quote Originally Posted by LokanasDad View Post
    They scheduled him for surgery the week before school starts. He will be out of school for a month
    Maybe if you told Shriners this, they could fit him in at he beginning of summer?

    There are sometimes cancellations. Maybe you can get on the wait list for any cancellations at the beginning of summer or maybe even starting right now if possible. It might matter less about missing a month of school now versus missing the beginning of hte next semester. I have no idea.

    Alternately, since a) your son's curve is just into surgical range, b) there is the issue of significant continued growth with boys at that age, and c) there is no demonstrated high progression rate at least based on what you have posted, maybe you can ask if you can push the surgery out to Christmas break. That would allow him a whole semester to solidify his year at that magnet school.

    I'm just trying to throw ideas out there. I'm not claiming they are good or anything. :-)
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #53
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    Mar 2011
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    Wife called and talked Shriners yesterday afternoon and we are on the waiting list for summer cancellations, but they have not gotten rid of the Aug 8 date for fear that no cancellations would happen and then we would not have a date. School is trying to figure a way to count him in their census. Reason for the attend the first week is because the state only gives the public schools $$$$ based on students in attendance the first week of school. So, he may be at school that friday and sitting in the office or something.

  9. #54
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    Ah okay.

    I would still ask the surgeon specifically about the possibility of doing the surgery over Christmas break if that is possible. With teenage boys, waiting has a significant upside in terms of continued growth during the wait time. It might balance any progression in that period. And he would miss less school.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  10. #55
    Join Date
    Mar 2011
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    52

    MRI round two

    First MRI was almost two weeks ago now. We got there at 7 pm, they had him in the machine for between 3 and 4 hours. They were able to get the cervical, but that is all during that time. So they recommended doing the second time with sedation. Tuesday of last week, we called the dr here in town to see if he would prescribe something to take the edge off so they could get the imagery they needed. They told my wife they would call her back Wednesday afternoon after talking to the dr. On Monday, I started calling when they still had not called back. After calling three times on Monday without a reply, I tried again on Tuesday. PA told me that she was "about to call me back". She tells me they cannot prescribe something to even him out, but would have to do a full sedation which would be, according to scheduling, Mid to late June. So I called Shriners, intending to have his done up there at Greenville Memorial. Have I mentioned how great they are? They ordered a pill with the local pharmacy so that we could do the #2 on Friday afternoon. Fast forward to today. I call the pharmacy to make sure the meds are ready. They do not have a record of it, so I call shriners. PA there says she talked to pharmacist personally. Call pharmacist, she says it must have been the corporate switchboard that PA talked with. She calls the PA and 15 minutes they have the med ready.

    Now we go tomorrow and hopefully will have the MRI out of the way. I wonder if Canada may not have a better medical system than we do.

  11. #56
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    Nov 2010
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    British Columbia
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    I wonder if Canada may not have a better medical system than we do.
    Well, that's a tough call b/c I have been very happy with our medical system and haven't had a single issue with it until my son was diagnosed with scoliosis about 1.5 years ago and needed to see an orthopedic spine specialist... we're still waiting for that first consultation. Meanwhile his curve progressed extremely rapidly to 110* and we ended up applying to Shriners to have his surgery done is the US. Actually, his spine was so far gone he needed two surgeries and halo traction for four weeks. So obviously our medical system did NOTHING for my son's scoliosis.

    That said, maybe it's just a British Columbia thing b/c I see others on here who live in Ontario who don't seem to be having any trouble at all getting their kids to a spine specialist to be braced or surgery etc. It's always like this for BC though, Ontario is the centre of the universe where all the decisions are made and they seem to fare better in a lot of ways. BC might as well be Mongolia. Out of sight out of mind.

    My son had one very long MRI and I asked one of the doctors if she thought it was okay to give him a 1mg of Ativan before the MRI and she said yes, she also suggested Benadryl. I had the Ativan on hand so I gave him that and it was enough to totally relax him for about 3 hours and then it wore off but the MRI was done thank goodness. It does take a long time to scan a whole spine. Hope all goes well with the second one.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  12. #57
    Join Date
    Mar 2011
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    52

    Back from MRI

    And the laughs just keep coming. Got there and they tell my wife that we had cancelled the MRI. She tells them "No we did not". Guy calls over to offices and they tell him that the father cancelled at 8:33 AM yesterday. Right then is when I came in. I corrected him and told him I most certainly did not. He tells me that booking is saying I did, I told him that I was in a meeting at 8:30 so I am pretty sure that I can prove it was not me. After thirty minutes of my wife talking to them, she would not let me talk to them, they had him scheduled to do a lumbar across town at 3. So we sped over there. Took an hour, but he is finally done. Local dr said they did not get Thor., but he pulled up the report on his computer and said that they had it and the cer. and that the reports looked good. So come tuesday it is over to get copies of everything and send to Shriners since I do not trust them to get the results to them.

    The comment about Canada's was specifically because they kept you waiting so long. I do not know which is worse, an apathetic system that will not book you or one that books you and you have to fight the whole way to get anything done. In case y'all cannot tell, I am pretty frustrated by the local hospital system right now.

  13. #58
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Okay, I guess I missed your sarcasm on the Canada comment. ;-)

    I can tell that you are frustrated and yes you will have to fight for every little thing it seems but I can 'almost' guarantee you that once you're dealing with Shriners only, things will go MUCH smoother as they are very organized. At least that was my experience with the Portland hospital. Top notch all the way!!

    Edit: Oh, and I'm still waiting for BC Children's Hospital to call and set up that first appointment. By the time they do, Elias will have his own kids by then and perhaps we could put them on the wait list in case they end up having scoliosis.
    Last edited by Elisa; 05-06-2011 at 05:00 PM.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  14. #59
    Join Date
    Mar 2011
    Posts
    52
    Oh, the shriners people have been incredible. It is the locals who are horrid. I almost feel like his dr's office feels since they are not doing the surgery that they will just ignore us out of spite. I was real close to just going up there for the MRI. They are so nice and act like they actually care.

  15. #60
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Ohhh, I know the feeling. When I first mentioned to the receptionist at BC Children's Hospital that things were going incredibly SLOW and my son's spine was progressing incredibly FAST and that we were thinking of contacting Shriners... she got pretty nasty and told me that IF we went "that route" then "don't expect any followups from us". Her saying that made me put off contacting Shriners for several more months until I really had no choice but to beg them to look at our son whose spine was SO bad. We both lived at the Portland hospital for five weeks and it was friggin' awesome! I enjoyed each day seeing his spine get straighter and straighter. It was a wonderful experience that came out of such a bad situation.
    Last edited by Elisa; 05-06-2011 at 06:00 PM.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

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