spinecor

[emarismom]

Well I'm very glad to see that the tension on this thread has subsided. It truly is a wonderful place to gather information and support. I don't know how I would have gotten through all of the decisions I've had to make in the last year if I didn't have this forum to come to.

Just as a note, my daughter does not have AIS. Her scoliosis was caused by Chiari and a syriyx. A few months ago, when her curve increased with her spinecor brace, I called Janice at Shriner's in PA. I wanted to find out "if my daughter was even a candidate for VBS", if Emily were to continue to progress. According to Janice, Emily is a candidate for VBS, even though she has had decompression surgery and continues to have a syrinx in her spinal cord. So it seems as though VBS is not only being used in AIS cases, but is now being used in scoli caused by neurological issues.

As of this moment, I am trying to stay positive and confident that Emily's curve seems stable in the Spinecor brace. I have no idea what the future will hold, but I do know that this brace has given me some hope that Emily's curve "might" improve. If it doesn't then at least I have the knowledge that I have tried to do something to help my daughter. By taking the wait and see approach, that the orthos STILL recommend I do, I would be
A) allowing her to progress
B) resigning her to "at least" having a 20 something degree curve for the
rest of her life
C) putting myself and her into a position were we may have to be reactive
instead of proactive

Scoliosis caused by Chiari tends to be very aggressive if it progresses. So at this point if her curve were to progress, then we would be on a plane to PA. As I see it, there are no right or wrong treatments or paths. Rather what is right for someone at one point in time, may not be what is right for them at another point in time.

Finally, ALL of the children of the parents on this board are VERY blessed to have parents that are here, searching for options, trying to do all in their power to help these children. I am a teacher. I have told three different parents of elementary school children to take their children to the pediatrician to get checked over the last few years. (You know how NOW you see scoli everywhere you go, but never noticed it before). One parent has not asked their doctor to check the child. The other two kids do have curves according to their pediatricians, but the parents have not even taken the kids to an orthopedic. It is so infuriating.

We are all here for our kids, we shouldn't be here to say that one treatment option is better than another. It is all dependent on each individuals particular situation.

Just my 2 cents.

[shaes mom]

Emarismom,

I'm with you, keep trying and searching out new avenues/procedures. Better to be proactive then sit and wait. Like you said, at least you know you've done what you can.

As far as recommending to other parents to take their kids to be checked - maybe they don't understand the severity of scoliosis. I know I didn't. When Shae's doctor told me she needed to be checked I was like "ok". So I took her that day for an x-ray. Then I found out she had two 20° curves and I then started researching it. What a pit in my stomach. I thought my world was coming down on me. But really, in the beginning I had no idea. I had heard of scoliosis and knew that it was a curve in the spine but never, never, never knew it could be so bad.

Have a good night.

[pat]

Deshea,

You're my life saver this week. I hadn't even thought of passports. My husband is the only one who has one. Oh boy, best get moving!

Passport info: www.travel.state.gov, now taking 4-6 weeks, expedited 3 weeks.
p

[shaes mom]

Thanks Pat!

[shaes mom]

Can anyone recommend a hotel in the Montreal area?

[mpj]

in/out of brace x-rays/hotels

Hi,

Just a suggestion, and maybe some of you are already doing this, but we have our daughter followed by Dr. Rivard and our local orthopedic. Dr. Rivard has so far done the in brace x-rays and our orthopedic follows her progress with out of brace x-rays. Then I feel like my Drs. can keep each other accountable. So far their reports have been very consistent.

As far as hotels in Canada, we have stayed at the Hyatt Regency and the Delta. They are both really nice, and we have gotten good deals with airfare on travelocity.

Sarah

[desheah]

theresa,

sorry my husband has family in northwestern vermont so we always stay with them. no help on hotels.

another option is a passport "card" versus "book". supposedly cheaper and possibly quicker? take a look at the gov website and see if anyone can get one or if there are special requirements.

deshea

[desheah]

emarismom,

your post is very well said. all of us just want to do what is best for our children. we all come from different backgrounds, but we have that in common.

good night,
deshea

[pat]

theresa,
another option is a passport "card" versus "book". supposedly cheaper and possibly quicker? take a look at the gov website and see if anyone can get one or if there are special requirements.

deshea

The card is cheaper, considerably, but definitely not quicker . . . I've been told as a Passport Acceptance Agent, that we should tell anyone who applies they'll have them in hand sometime mid June, at the earliest . . .
p

[jillw]

Theresa,

When we have taken an extra day to make a mini-getaway we have stayed at the Springhill Suites (http://www.marriott.com/hotels/trave...-old-montreal/) Its a Marriott property in the "old montreal" section which is quaint. It isn't a suite per se (i.e. not a separate room with a door) but it does have an extra sitting area with a pull out couch/microwave/mini fridge in addition to the regular room part. Clean rooms. Indoor pool which the kids enjoy and a good breakfast is included. Parking is extra. Its an easy 20 min. drive to the hospital-they can give you directions at the front desk. Rates vary but the AAA rate we got may have been around $169? Another visit we got in late and left immediately after so we just stayed at "Ruby Foos" which is closer to the hospital and is a cheaper property. I believe the rate was under $100, but the rooms have an older feel to them - yet were adequate. Good luck

What age do you need passports for if you are driving? I don't remember what the cutoff is, but I know with my 7 and 5 year old we only needed an original birth certificate for them (and a passport for us). If time is really an issue, perhaps your husband could take her up (I know, you wouldn't want to miss the appointment, but if you had an appointment and your passport didn't arrive in time ...)

[jillw]

Theresa, like you I didn't have any idea of the severity of scoli either. Although my daughter's pediatrician recommended that I take her for xrays, he said it was no rush (I don't think he realized she already had scoli, I suspect he thought she just had a mild assymetry to begin). I scheduled an appointment as soon as possible and got her in within a couple weeks, but the truth is, the reason I got her in so quickly is because school was about to start again and I didn't want her missing school for the appointment. The day of the appointment when I found out she was already in full blown scoliosis and I did more research, I also felt as if the world was crashing down and couldn't believe that I had been so blissfully ignorant during the 2 weeks we were waiting for her xray (I really assumed the assymetry wouldn't become an issue until she hit 12 or so worse case....and even thought it might go away on its own before then based on the pediatricians words) I think many doctors take a very casual approach to getting the scoli xrayed and diagnosed.

Emaris, during the 5th grade screening, a small "hump" was found on my neighbor's daughter. They took her to the pediatrician, but not an orthopedist so it hasn't been xrayed. I keep telling her to get an xray so she has a good understanding of what they are starting with - which is hopefully nothing/false positive, but at least they'd know....

[shaes mom]

Thanks all for the information on hotels. I would let my husband take her alone (if I absolutely had to) the only thing is the long drive. I'm sure he could handle the 5-6 hour drive if he had to but I'm sure it would make it much easier if we could share the driving.

I'm still waiting to hear from Dr. Rivard's office. I called and emailed last week and called again today and emailed again today. I am ANXIOUSLY awaiting a response. Now that we've made the decision I just want to get it done. In the meantime we'll get our applications in order and I'll continue to hold my breath (does anyone else find themselves holding their breath when they get anxious?)

[christine2]

Shaes mom
As I said before we make mini vacations out of our trips. Up until our Montreal trips we were basically home bodies. I tell my daughter that because of her Dr. trips we get to see and do new things.

We have been to Lake George, Lake Placid, Parc Safari Zoo (that was fun) The Great escape .....

I am not sure what to plan for this summer (July we hope) Anyone have any ideas??????

I remember our 1st trip. I was so nervous. I need to pace when I am anxious, but you can't pace when you are in a car for 7 1/2 hours!! We had rented a cottage on a lake but then found out about the scoliosis. Dr Rivard saw us quickly but the date landed right in our vaca week. We spent a ton of $ that summer. The cottage (which we used for 2 days) the brace.

It was odd being in a French speaking hospital. It was like walking thru a maze to get to the bracing clinic. But it was all worth it, I felt like we won the lottery when Dr. Rivard gave us the #'s after the 1st inbrace x ray!!!!

My daughter is so young, she handled everything great. She did not feel well on the ride home but my husband and I agreed that once that brace goes on we follow instructions "to the letter", 20 hours a day right from the start! And that is what we did. My daughter is so good about compliance. I ask her if she wants out of brace time and she says no. I am very lucky

I will throw out info as I remember it:

We have had a terrible time find body suit or under clothing for the brace. My daughter will only wear the Spinecor bodysuits. Every time I am there I pick up 1 or 2 new ones. It is a PAIN to get them shipped!! If I had know I would have purchased 1 or 2 extra on the 1st visit.

We ask for my daughters x rays on a disk while we are there, again a PAIN to get them sent.

I keep a small notebook, I write everything down in it (DR phone #'s, Insurance info , ? I have to ask Docs) I also care for and elderly mother so all her stuff is in there too.

We also need to get passports, the info I have says birth cert. can be used up until summer 2008 but double check that, things can change especially when it comes to Homeland Security.

[christine2]

I just did some research and it appears that we will not need passports until June 2009. If that is the case that could save a couple hundred $ (for now).

Anyone have info other than that please let me know

[shaes mom]

Hi all,

Good news. I spoke with Dr. Rivard today and we've gotten Shae in on May 22nd to see him. I'm excited and scared and nervous. I know we'll be in good hands though and that's reassuring.

Hope all is well with everyone!