View Full Version : Update on Deirdre
25th April 2005, 08:03 PM
We had the anesthesia clinic today. VERY NICE doctor, I recognized her from previous castings. She remembered Deirdre and couldn't get over how much she has grown.
I'll try to keep this short and sweet. The anesthesiologist believes that Deirdre should have no problem whatsoever with JUST sedation. She said that if things don't go well with the sedation that they could always anesthetize her - although given that the procedure usually takes ten minutes to complete, she doesn't think it will be necessary. I asked her if she could speak to our ortho about this and she agreed :D I have an appointment with the ortho tomorrow, so we'll see what the verdict is.
When we were saying our good-byes, Deirdre spontaneously walked over and gave the anesthesia doctor a great big hug - I almost started crying. This must be a mom thing :oops:
25th April 2005, 08:07 PM
That's great news Celia, I know how much you were worried about her anaesthesia. I can't believe it takes just 10 mins - that's great. This will mean she can be in casts for longer if needs be and you won't have to go to a brace if you don't want to.
You must be hugely relieved. Let's hope the ortho sees it in the same way and agrees to give it a go. :D
25th April 2005, 08:55 PM
Got love the spontanetity of children. They know who is worth hugging! I do too. Here's a Mom hug for Sealy! ( ) Jean
25th April 2005, 09:16 PM
and here's to a persistent parent.Well done Sealy.
25th April 2005, 09:23 PM
Oh Sealy, I am delighted for you.
I was only thinking about you last night wondering when the appointment was. I hope the appointment with ortho goes well
25th April 2005, 10:09 PM
Thanks so much to all of you ! If not for your encouraging words, I wouldn't have had the confidence to even question the status quo at the hospital. I'm sending you all a great big cyber ((((((hug))))))
She had Deirdre's file in front of her and looked back at previous castings and saw that they took no more than 15 minutes ! If the old "cod fish" agrees tomorrow, we'll cast her again in the not too distant future. :-D
Amazed, Sins and Nicola,
You all make me so happy. Thank-you for the good wishes
26th April 2005, 05:27 AM
Gotta love SSO ers not? It makes me proud!
26th April 2005, 10:11 PM
Some good and bad news to report. We had the ortho clinic and the doctor flatly refused to cast her without anesthesia. :evil: So we have decided that the best course of action is to anesthestize her one more time for a new cast and at the same time get a mold for the brace. Kind of a let down after yesterday's meeting with the anesthesia clinic. The anesthesiologist assured me that as long as they are aware of any complications that Deirdre may have experienced with previous castings, there shouldn't be anything to worry about. Laryngospasms can be life threatening if nothing is done about it - but they have machinery that will alert them to any problems. :-?
I also spoke to the orthotist and he showed me the kind of brace Deirdre will eventually be wearing...another B*I*G letdown. The brace looks very rigid and uncomfortable - as soon as Deirdre saw it, she broke down in tears and wanted to leave.
On a positive note... the resident who saw us before Dr. H told me Deirdre is famous at the hospital. I asked him to elaborate and he said that everyone in orthopaedics knew Deirdre because of her great success. We had a stand up x-ray with the cast and her curve has actually improved a couple of degrees on its own ( yahoooooo !!!! ) I thought I was going to faint when I saw the x-ray because there is definitely less rotation.
I'm soooo exhausted. Oh, I saw a little boy in halo traction at the hospital.
26th April 2005, 10:21 PM
Sounds like a mixed report. It's a shame the doctor refused to cast her with sedation only - did he give a reason? After your good news it's even more frustrating that the experts can't agree. Sounds like a good plan though, to cast her and do the mold at the same time. How often will she need to have the brace changed, do you know?
What does the brace look like? Is it a bit like a Boston brace, or is it a completely different one? I dont' know what type of curve Deirdre has so can't imagine what the brace would look like.
I imagine we'll be in the same situation as you in a couple of years, if not less, although I doubt Erin's curve will be as low as Deirdre's. That is definitely a plus for you. Does she have xrays out of the cast too?
Sorry, I seem to have asked a lot of questions.
Halo traction - hmm, now that is something that scares me, it looks like such torture.
You get some sleep
Catch up soon
27th April 2005, 12:41 AM
Less rotation! That's WONDERFUL! Congratulations, both of you!
How old is Deidre, again? What is/are her actual curve(s)?
27th April 2005, 01:48 AM
The reason he gave for NOT sedating is that Deirdre will be required to be in traction on a frame. For some unknown reason, this complicates things. :-o He said that when he explained this to the anesthesiologist, she was in complete agreement with him. :-? If you ask me, it's just his personal preference. The apex of her curve is T8 and T9
According to the orthotist, given Deirdre's age, the brace should be replaced once a year - unless there is a sudden growth spurt. The Canadian govt will cover 80 % of the cost of the brace and the other 20 % will be covered through work. We have decided on a modified Milwaukee - no neck ring @! The pelvic and abdomen area will have little holes throughout for air circulation. We have a choice of lovely designs such as butterflies and flowers, just to make it a little fun for Deirdre.
Today's standup x-ray with the cast was compared to the one taken in January which appeared to be worse in rotation and curve size. She is now under ten degrees !!!! So.... it looks as though there may be some self correcting going on. :-D The next time she has an out of cast x-ray will be before the next cast change. For example if the cast change is on a Wednesday, they will saw off her current cast on Monday and take a standup x-ray on Tuesday followed by the cast application on Wednesday.
The braces DO look like torture devices - they are not like casts at all. They are meant to be tight. Apparently when she gets her brace we will have to go through a weaning-in period.
Deirdre is four and a half. Her curve is thoracic :-) I'll try to get a picture of her x-ray posted to the group.
Don't give up on Erin... things could still turn around. If not, there are still things to celebrate - she is growing and the curve is being maintained, which is VERY important. It just occurred to me that I'm just raving about Deirdre's great results and I didn't stop to think how others are doing and maybe feeling a little down. I'm sorry if I seem so UP all the time. :ph34r:
27th April 2005, 04:41 AM
That is a pity about the anaesthetic, I really thought he may agree to the sedation.
However you are right to be so upbeat about Deirdre's treatment, I for one am delighted to hear about such a success story, it really gives encouragement to carry on.
I have finally posted a photo of Niamh's brace, it sounds a lot less torture-like than Deirdre's one, but this is only a temporary solution.
Best of luck next week,
27th April 2005, 04:21 PM
Niamh's brace looks a lot different than the ones I saw yesterday. I like the flower and butterfly motif. I'll try to get a picture of it when I can. It has a metal bar going around the left and right shoulder. The metal is supposed to sit about a quarter inch above the shoulder - so it's not supposed to be evident to the outside world. Other than that, it looks like a standard milwaukee. The orthotist will cover the metal bars running up and down the front and back with leather. :-D
Oh, I've uploaded pictures of Deirdre's most recent stand-up x-ray with the cast. For comparison purposes, I have also included her original x-ray when she was first diagnosed. :clap:
27th April 2005, 06:50 PM
You must be delighted every time you compare those x rays Celia.
I can't believe how straight that spine looks.
I think Niamh's little brace is cute,I hope she's tolerating it well.I presume that was done at the orthotic centre adjoining Cappagh.
Just seeing Deirdere's x rays though must give major encouragement to other worried parents.Thanks to both of you for putting some really excellent photographs.We nearly have enough pics for an infantile gallery all on it's own, which reminds me,Have you seen nojobro's pics in the gallery of the brace for her 2 year old daughter.That looks very different again.
27th April 2005, 10:48 PM
WOW! I just looked at her pics in the gallery! Her back is wonderfully better since being in the cast! I know that the second one is IN the cast but still!!! AWESOME!! :D :D
28th April 2005, 02:22 AM
The original is quite a shocker isn't it ? It's my own personal copy and I'm keeping it as a reminder of what could be if I don't remain vigilant. The most recent x-ray shows a little kink - I think that's rotation. If you saw the actual x-ray It really looks a lot better than the other copy, but because of shadowing due to the breast shield ( EVERYTHING WAS SHIELDED :-D ) it looks worse. What an ordeal all of this has been, I think I'm ready for the funny farm :bounce:
28th April 2005, 09:22 AM
Wow... I am so amazed and impressed by her correction! You must be so pleased. I didn't realize how well the treatment was working for you two. No wonder they brag about Deirdre as their incredible success story. Great work!
28th April 2005, 12:19 PM
It just occurred to me that I'm just raving about Deirdre's great results and I didn't stop to think how others are doing and maybe feeling a little down. I'm sorry if I seem so UP all the time.
Hey Sealy, don't be daft. You have every reason to be upbeat about Deirdre's treatment - her xrays look fantastic, and you never know, in another year or so we may have similar ones for Erin! I'll never give up on her being straight, even if I sound like I have.
I've probably asked these questions before, but what age was Deirdre's first xray taken (the 60* one)? It looks VERY similar to Erin's, even going the same way and the apex is similar (Erin's was 62*). And how many casts has she had? Her excellent response to treatment is certainly an inspiration to other parents.
Sins - I think an infantile gallery would be great and give new mums a place to see such great xrays and cute kids and have some hope at a very scary time. Any chance of one? I'll add some more pics if you need more :D I havent' added any xrays yet, although they don't offer quite as much hope as Sealy's do.
28th April 2005, 12:51 PM
The gallery has reached a point where it needs to be rearranged as we have approx 200 pictures.I'd love to see an infantile gallery as I don't think one exists anywhere else and the benefits would be enormous.I'll have a chat with Titch and her other half 2C (site owners and technical expert :D and we'll see what needs to be done.
28th April 2005, 01:16 PM
An infantile gallery is a fantastic idea :-) I'd like to hold off just a little though, if no one minds, because we're working on updates for the site, and if it proves technically possible, the new galleries may feature the option to cross post a picture to multiple galleries when it is uploaded. Currently, the only way to do it is for the person posting it to post twice, which is both a lot of work, and also means that we have 2 (or more!) copies of every xray that gets cross posted.
I also hope to have a public gallery when we update the site, so that any images which people are happy to have publically viewable can be cross posted to that as well.
That really is fantastic, and inspirational correction that Dierdre has got - it's wonderful to see :-)
28th April 2005, 05:08 PM
Our orthopaedic doctor is as proud as a peacock ! If you saw him, you would know that it's SUCH a personal thing for him. :-)
I am expecting to hear great things from the Andrea and Erin camp ! :-D :-D Deirdre's first x-ray was taken when she was about 19 months old and her first cast was applied two weeks later. If I remember correctly, it went as follows:
First cast May 2002 (lay down x-ray 20 degrees, one month later standup x-ray in cast 38 degrees)
Second cast Sept 2002 ( lay down x-ray 20 degrees, two months later standup x-ray in cast 35 degrees)
Third cast Nov 2002 (lay down x-ray 14 degrees, two months later stand up x-ray in cast 19 degrees !!! Yahooooo !!! )
Fourth cast April 2003 (lay down x-ray 8 degrees, three months later standup x-ray in cast 13 degrees )
She has been holding at roughly 10 degrees for the past two years. She is going into her eighth and final cast and from then on... we'll see. Her ortho seems to think that her curve is stable at 10 degrees - that remains to be seen !!! :-o
Oh, Canada IS a very large country but I thought I'd ask, what city will you be vacationing in ?
Having an infantile gallery is a great idea.
28th April 2005, 09:52 PM
It's uncanny how alike our girls are. Erin's first cast got her from 62* to 38* and then her second got her to 36*. Unfortunately the next 2 only got her to 35* and then 34*. Do you think there was any link between the fact that the turning point cast was done only 2 months after the last rather than 3 or 4? Perhaps the next cast will be our turning point too :D
We're going to Vancouver for a couple of days and then driving up through Banff, Jasper and the other tourist spots in an RV. Should be fun.
29th April 2005, 03:15 PM
I could be wrong, but I still believe that the turning point came because of the daily massages. I started massaging the convex side of her back daily from Sept 2002 onwards. At our routine clinic appointment when the standup x-ray was taken, our doctor saw something and he immediately wanted to change her cast within the week. I wasn't expecting the cast to be changed so soon. I think something happened...maybe derotation or whatever, that he could see on the x-ray.
It's a shame you're at the other end of the country. I was thinking we could get together for high tea :cheers: Maybe another time :-D
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