View Full Version : An update on us
14th February 2005, 03:39 PM
Sorry I haven't been around much lately. I kind of fell into a bit of an emotional blackhole after the last hospital visit, and am only just dragging myself out of it. I wasn't going to post an update, but figured that would be unfair as we all share the good with the bad.
Erin had her last cast change on Feb 1 and, while we we thought her back looked better out of the cast, we couldn't get the curve down any more than the last couple of times. We have kind of plateaued at a mid-30s curve, which means it isn't very encouraging that we will make her straight using casts alone. We'll keep on trying with them as they are preventing her curves from progressing, and the longer we can prolong surgery of any kind, the better. Mr T has said that if we had not started the treatment when we did, Erin's curve would now be over 90* at least!! Difficult to imagine on such a tiny body. Her curve is still flexible, so we'll keep going until someone says we've run out of hope. The open sore on her back has improved, although the whole area is understandably sore from the pressure, much like Ryan's in his brace I suspect. It doesn't bother her and she doesn't complain of any pain - just itchiness. For some reason this one has been really itchy for her. Haven't got the Piriton out just yet, but it's on standby.
Looks like we'll be in jackets for much longer than I originally hoped for, but if we can keep her curve where it is and prevent it from progressing using casts and braces through childhood, then we are most certainly in a better position than doing surgery now.
I'll post a pic of her back out of the cast and see what you all think.
Next casting on April 26th - back to every 3 months now!
Thanks for reading
14th February 2005, 04:09 PM
My daughter is also in serial casts - she has been for the last three years. We live in Canada where casting is not such a remote procedure. I suspect that she will go into a brace sometime this year. I've already spoken to the othotist at our hospital and I have a general idea what her brace will look like. I'm kind of dreading it, since I've become so used to casts.
The first six months that my daughter was in casts - I think there were a total of two - they couldn't seem to get her curve down below 38 degrees (before being casted her curve had reached 68 degrees !). What I started doing after the second cast was applied was gently massaging the convex side of her curve EVERY DAY. The apex of her curve is T8 or T9, so it was very easy to reach. I've also read that growth occurs during sleep - apparently there is a surge of growth hormones released into the system within half an hour to 45 minutes of falling asleep. To this day, I make sure that she is sleeping on her left side (her curve is to the left). Believe it or not, I often wake up in the middle of the night to turn her. I also give her back a little massage before she falls asleep. When I first started massaging her back, I noticed her little muscles on the convex side were VERY TIGHT and perhaps it was preventing the spine from correcting further. You might want to try this - I think it could only help. Oh, today my daughter's curve is roughly 10 degrees in the cast. :-)
15th February 2005, 01:34 PM
Sorry to hear you are a bit disappointed with Erin's cast change. I am sure it must be very frustrating when you think that there is an improvement and to be told that it is minimal. However the positive thing is that the cast is keeping her curve at a "reasonable" mid 30 deg. Niamh's curve is approx the same although she has not been casted yet, I do think her ribs are looking worse so I have brought forward her appointment to next Monday. hopefully I will know more then.
Sealy that sounds like a really interesting idea to do massage, was that something you just started yourself or were you advised to do it.
We are also in a bit of flux at the moment as we may have to relocate to the US for a few months so I really hope we get the casting sorted before that.
Andrea, wish I could offer more support I will try and check in here more often
15th February 2005, 02:12 PM
Thanks guys for your support. What makes it even more frustrating is that both times, when the consultant sees the xrays, he says "i haven't measured it yet, but it looks good", making me think it will be better, and then he tells us it hasn't changed. grrrr.
The massage thing does sound interesting, although Erin's cast is so tight I'm not sure how I would get my hand down there. Perhaps I'll have to investigate whether I can do it. Will definitely give your tips a try - as you say, they can only help. You're right about the sleep thing - I think Kim recently posted a note to say that bones only grow when the body is asleep. Something about a study on lambs I think.
15th February 2005, 02:52 PM
It's pretty hard to get me to stop talking when I start - so be prepared :-D
When we first discovered my daughter's scoliosis - of course like most parents who have access to the internet - I spent days on the computer reading up on people's experiences with scoliosis. I came across this one mom whose son ( five years old at the time) was in a brace and she reported that despite bracing, his curve was INCREASING - if I remember correctly it got as bad as 45 degrees. At that point she started taking him to a massage therapist in addition to wearing the brace full time. At her next ortho appointment his curve was back down to the low twenties ! I don't know whatever happened to this little boy, but it looked like the curve was resolving. She really believed that massage was responsible for the curve resolving.
No one ever told me to massage my daughter's back three years ago, I just started doing it because of that mom. Sure enough, when Deirdre had her third cast applied, her doctor was able to get her curve down to 14 degrees ! It was real turning point for us - a stand up x-ray later revealed that her curve was 19 degrees. I still remember that one clinic appointment as if it were yesterday. Our ortho came in with the BIGGEST smile on his face and he was accompanied by another doctor - he said to me, Deirdre will live a normal life.
Andrea, have you actually seen the x-rays ? Her back does look very good out of the cast.
15th February 2005, 03:00 PM
Sealy - talk away! I haven't posted the pic of her back up there yet (have I?). there is one in the galleries of her back after her first cast, but I have an updated one where the rib hump looks much better. Not gone entirely, but better.
I have seen her xrays and they look so much better than out of the cast, but I guess that's the idea....
I'm at work at the moment, but can't wait to get home to try and give it a go!
How old is Deirdre now?
15th February 2005, 03:05 PM
Andrea,I don't quite know what to say about it! The thought of having Erin's spine measuring over 90 degrees didn't do my equilibrium any good, so I think overall, preventing that from happening is a very good thing.It does seem like braces and plaster casts will be a part of her life for the forseeable future and I know how disappointed and upset you must be over that.On a more positive note, it pleases me a lot to see that her curve is holding and she'll never know the level of deformity and lung damage that occurred all too commonly in the 1970's/80's as in my situation.There's so much new technology on it's way that if the plaster casts just simply hold the curve there's the possibility of non fusion surgery like vertebral body stapling or growth rods if necessary.You've bought some very valuable time for her already.Just hold tough!
Sealy,That was a very encouraging post.It just proves that there's still hope for avoiding surgery even in stubborn curves.
N, Good luck with your temporary relocation.It's a good idea to bring your appointment forward for Niamh.If you can get the casting under way before you leave Ireland, go for it! I'm not too sure if casting is common practice for infantile scoliosis in USA but Sealy and Andrea are more in touch with infantile scoliosis than I am.Have a chat with Mr McManus and he may be able to recommend a consultant in the states who could look after Niamh in the interim.You will most likely need some heavy duty insurance though.let us know how that appointment goes for you.
Good luck all.
15th February 2005, 03:33 PM
I don't know if you know this, but I'm an eternal optimist. I see the glass as being half full rather than half empty. I think once you've lost hope then you're beaten. Scoliosis in very young children is very difficult for a parent to deal with. In the worst case scenerio - surgery should be considered. Even with the new advances in technology doctors are coming up with, complications do develop. I'm not totally against surgery - I believe it does have it's time and place - I'm just against allowing my daughter to be a guinea pig for many of these new procedures. I'm aware some parents have NO choice in the matter and my heart goes out to them. I'm so very thankful that Deirdre is past that stage.
Andrea, Deirdre is four years old.
15th February 2005, 07:47 PM
Andrea and Sealy and other Moms of scoliosis kids you're doing a great job. Being your child's number one advocate is a difficult job. The massage idea has a lot of promise. Even if it does nothing clinically what it does for your child's fragile self is a great thing. I still remember the first time I had someone rub my entire back and how good it felt. It was so relaxing and assuring. Finally someone didn't just poke or prod or be grossed out. Hang in there Mom's I wish I had some fairy dust or some other magic to send you.
15th February 2005, 09:03 PM
Is it Faith, Trust and Pixie Dust ? Wait a minute, I think that's for eternal youth. :-D
Actually, Deirdre also LOVES to have her back rubbed - it's very soothing for her. My husband has mild scoliosis and he INSISTS on back rubs. I have no idea what it feels like - no one has ever rubbed my back :cry:
Amazed and Sins you're both such sweeties. In the next life, I'll try to come back as your mum - for sure you won't have to suffer through scoliosis. If I made you wear casts for three years would you still love me ?
15th February 2005, 09:10 PM
I've uploaded her most recent back picture now. Should be up there soon. Let me know what you think.
16th February 2005, 12:04 PM
OHH. Never had a back rub? Oh my! Allen is wonderful at it. I'll lend him to anyone - but you have to travel. He has to stay and run his business but after the day is done. I usually liqour him up with a scotch and hope he gets the hint. It's sooo goood. He's got a firey rub, a calming rub, a very sexy rub and a it's sore rub etc. Wonderful all of them.
16th February 2005, 06:36 PM
I just saw the picture of Erin's back out of the cast - what degree curvature does she have out of the cast ? Did the doctor say what her RVAD was ? Is it improving ? Her back looks really good ! Her shoulder blades seem to be level. Her skin is SO red though, is that from the cast ?
I've uploaded a picture of Deirdre in her cast. I may have hit the upload picture twice so there may be duplicates. You'll see that Deirdre's cast is a LOT different - however the purpose is the same. :-)
16th February 2005, 07:54 PM
Gosh, Deirdre's cast is different isn't it? Must be nice not coming over the shoulders, although Erin is so skinny I'd worry about it falling down! As long as it's working, it doesn't matter what it looks like.
Erin hasn't been xrayed out of her cast for a while as the doc doesn't want to expose her unneccessarily and says he doesn't need to know what it is out of the cast at this stage. Obviously it's bad enough to have to keep casting so we don't need to know what it is I guess.
We have also never known her RVAD. They could measure it if they thought it would be useful, but they don't. Theory being if one measurement comes down, the other will follow.
Yes her skin IS red. She has a prominent rib hump so there is a good deal of pressure on the right hand side and she is so skinny there's no fat to protect her ribs. I don't know whether this will improve with time.
17th February 2005, 02:50 PM
Gosh the casts are quite different aren't they. Andrea, from the photo, Erin does not look to have a prominent rib hump, did it improve any with the casting?
Niamh's is quite prominent also, I must try and post up a picture for you to compare.
17th February 2005, 03:03 PM
She did have quite a prominent rib hump before casting, and there is still one there depending on the angle you look at her from. The other back photo in the galleries shows it as a bit more prominent, but we don't have any photos of her before casting, which is a shame - they would be good for comparison.
It'd be good to see a picture of Niamh if you can find some time to post one up.
17th February 2005, 03:52 PM
The cast is anchored somehow - there is NO risk of it slipping off. It's pushed in just below her rib cage at the back, maybe that's it. The nice thing about her cast is that it's very inconspicuous and there is no restriction of movement at all. Her cast is a bit loose which means a lot of air can circulate, so we don't have skin problems. :-)
18th February 2005, 11:55 PM
Andrea, I'm sorry to hear that things arent maybe working out for you....but i will pray for you and Erin, that it will get better and that maybe Erins curve will decrease!
Hang in there
20th February 2005, 09:50 PM
I have tried to post a picture of Niamh's back, it is not a very good one as the little monkey would not keep still for me. I hope I posted it correctly, as it has not appeared yet, but will check in tomorrow to make sure.
We have our appointment tomorrow morning so fingers crossed it will go well
20th February 2005, 10:04 PM
Hello - I just went to try to allow the photo through, and it hasn't appeared in my list, so I'm not sure what's happened. If you pm or email either me or Sins with a copy of the picture, we should be able to see if there is anything preventing it from posting, and help you with anything that needs doing. Broadly speaking however, it needs to be no more than 1024x1024 pixels, and less than 100,000 bytes (which is approx 97kb). Anyway, between us I'm sure we can get it posted properly :-)
20th February 2005, 10:33 PM
Good luck with the appointment tomorrow.We'll be wishing you both all the best.if you want to e mail the pic to me you can do so at firstname.lastname@example.org and we'll look after it for you.Fingers crossed for some good news.
20th February 2005, 10:33 PM
Looking forward to seeing your pic N.
Good luck for tomorrow. Keeping my fingers and toes crossed for you!
21st February 2005, 02:31 PM
Just back for appt. Has to be casted on Thursday, no time for delay.
Will post later from home and try to sort out the picture.
Thanks for all the good wishes
21st February 2005, 02:42 PM
I'm not sure if this is good news for you, or that this means the curve has worsened and you were hoping to avoid casting. I'm afraid I will have to read up again on your story (head like a sieve).
Good luck with the casting. Thinking of you
21st February 2005, 03:35 PM
looking forward to hearing your update.
We'll keep a look out for the pic and put it through asap.
best of luck with the casting.
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