brace for 3 yr old any tips?

[emmasmum]

Hi this is my first time using this site. My three yr old daughter was born with scoliosis, though not officially diagnosed until 23 months. She is about to be braced, and will have to wear it 23 hours a day, until they think she is ready for "growing rods" (does anyone know at what age they usually do the first op?). I'm anticipating big problems, cos she doesn't even like wearing clothes or hair bobbles, and screamed blue murder just at the fitting of the thing! Any info or ideas from people who've been through this would be really appreciated.
We are also due to go abroad on holiday about 10 days after it has been fitted, would it be better to delay putting it on until we come back?

[cdhheidi]

you dont mention how large the curve is, or the rapidity of its growth, so my answer will fit more with our experience with my son (who was also about age 3 when he got his first brace).

Sean's curve was dx at age 2 and was 65 degrees at that time. Within less than a year it grew to 80+, and he was braced AND ended up with the grow rod surgery. He had 2 expansions of his rods, with a fusion at age 5 (T2-L2). His curve was quite rapid in growth, and was a fairly tight curve so it was difficult to get a huge amount of correction. HOpefully you will not be facing the same things. SHOULD the docs talk about needing fusion at a young age, I would highly reccomend checking with some of the centers around the country that do the VEPTR procedure (also called titanium rib). Sean was not a candidate because he has very many other issues that would cause serious complications, but it has helped a tremendous number of kids.

Anyway.... what we did with Sean he ended up weaning in to the brace over a weeks time. Started with an hour in the evening after he got the brace, next morning 2 hours, afternoon 3 hours, next day 3 hours in the morning nap in the afternoon (so about 10 hours that day), next day he wore it 3 hours in the morning, 6 or so in the afternoon, and 10 at night as he wore it all night. He didnt care for it, but once he realized that no matter how much he cried I was NOT going to take it off (I did check to be sure it was fitting correctly and not causing sores...) he settled down with some help of various special entertainment that was ONLY allowed when he was behaving himself and not fighting the brace (video's, computer games, etc).

Sean may be a little different than some kids in that he has had no choice but to learn to adapt (he has a central line for nutrition, a g-tube also for nutrition and meds, is on oxygen, at age 5 started wearing bipap at night...) but I firmly believe that if you start a child of right, letting them know you love them, you care, but they MUST wear the brace, they will eventually come around and not fight it as much.

Did they allow her to choose a pattern for the plastic of the brace? If not, another reward could be stickers... LOTS of stickers that she can decorate it with. Sean loved to plaster stickers everywhere... really made the brace HIS own very special thing. We still have almost all of his braces (they made new ones each time he had a grow rod expansion) and plan on making something at camp invention with them this summer. (he also had another fusion as well as halo traction last fall, we have all the hardware that has been removed and are in process of making a windchime with it! LOL!)

Hope that helps, a little....

holler if you have any other questions!
Hugs, Heidi

[emmasmum]

Thanks for advice

Hi Heidi,

Thanks for the advice re; brace. Emmas O.T called yesterday and she was also in favour of gradual "weaning in" approach. Emma was given a pattern book and selected a fish design. I also like the idea about adding stickers, cos she is a great fan of stickers!

Emmas curve is less than 30 degrees and hasn't progressed since it was first detected. Up until a fortnight ago she was seeing a local ortho who favoured a "monitoring" approach with no treatment. However she has now been referred to Great Ormond Street hospital in London (supposed to be one of the best kids hospitals in the world), they took one look and ordered the brace with a view to fitting rods "soon". I don't know why the decision has changed, unfortunately I didn't get the chance to ask many questions, cos during the examination Emma was throwing a complete "wobbler" (she has come to loathe doctors/hospitals). An as yet undiagnosed underlying neurological disorder is suspected, because all the muscles on the right hand side of her body are weak (she can't run, jump, hop has problems with stairs etc.).

I have a few more questions, I hope you can help me with.

1) I've seen people mentioning a "singlet" or "undershirt", do they fit under the brace and do they help reduce discomfort?

2) Does the brace make a difference to clothing size?

3) Would it be a good idea to leave it off when we go on holiday? I'm worried that she won't be used to it by then (it's only a week later), and that the added discomforts of air travel, heat and restricted access to beach and pool might put her off forever!

4) What is the "titanium rib" treatment you mentioned?

Thanks again for your advice, it makes a big difference to talk to somebody who has been through it all themselves.

Best Wishes Kate

[cdhheidi]

Hi Kate,

Absolutely I would not give her a break on your vacation. I find that with my kids anyway, breaks of that sort make it all the harder to start back up again. They think "well, you gave me a break for that, so I should get a break for this and that and so on". And age 3, they cant really explain how they are feeling or really understand the importance of the brace to their future health.

I would give her some time off for pools/beaches, etc, but take it with you and have her wear it at night and as often as possible when it is not going to really get in the way of vacationing. The sooner she learns to accept it, the better you all will be for it. It will be a part of her life for many years to come unless the curve resolves itself, so better now than a larger curve later. (in my opinion! My son's was around 90-100 degrees when he had his first fusion at age 5, and it never went below 65... he has a very obvious rib hump as well as spinal pain that he lives with 24/7).

I wonder if the docs at GOSH felt that the curve had progressed and they just didnt tell you what the new degree was? If it isnt progressing, I would be surprised to hear they wanted to do rods soon.

Ok. About the t-shirt for underneath. Our orthotist who made the brace gave us several special t-shirts for under. They are specially made to be wrinkle/seam free, and of a fabric that takes the sweat away from the skin keeping the skin healthy and free from sores. I would call and ask if they will be providing them for you, and if not, you will need to find some online or elsewhere. A cotton t-shirt from the store is not good enough, it needs to be of this special fabric as it is very close fitting and stretchy so that there are no wrinkles. We had to put holes in ours as Sean has a G-tube for feeding and meds, and this fabric was awesome and didn't run! I think Royal Knit is the name of one company? If you need it, I am sure someone can reccomend a manufacturer for you. You absolutely want to have her wear the shirt under. And with a young child in the heat, sometimes that is all that they need along with a diaper, undies, and maybe some shorts. Especially with a pretty fish pattern and stickers. If she feels uncomfortable having others see the brace then a lightweight shirt or dress over the top, but my opinion is the sooner she sees you comfortable with seeing the brace, the sooner she will be comfortable with it too. Make sense?


Clothing sizes do go up a bit... in Sean's case about one size. We found that stretchy clothes like sweats or shorts with elastic waists were best.

Has she had an MRI? If they are talking any kind of surgery I would insist on it. Sometimes there are underlying spinal cord issues that can cause scoliosis, and treatment without finding out what they are or even that they are there can cause further damage. Our doc did the MRI before bracing even (though the bracing happened very shortly before the rods because his curve was so dramatically severe and changing rapidly). And especially if they are suspecting neuro issues of some sort, I would want to have that MRI to rule out other problems.

Because Sean's rods and bracing began over 5 yrs ago, and because he was complicated and I think scared our orthopod just a little when he had his rod placement he not only continued to wear his brace 24/7 (we took it off for sponge baths and dresssing changes only) he also had to be either flat on his back or at no greater than a 55 degree angle. Ended up in a wheelchair for 6 months in a reclining position and it was terribly hard on him. I dont think most doctors do that anymore thankfully, but thought I would mention it to perpare you to ask questions if you should get to that point.

I do understand all too well about kids fearing and hating hospitals and doctors. Sean has had over 30 surgeries in his life along with several medical type hospitalizations of weeks or more. If you didnt have a chance to ask the questions you have, I wonder if the docs at GOSH would be willing to consult with you on the telephone so that you can talk undisturbed by a wailing wriggling child?

The titanium rib surgery is wonderful for kids with large curves where the curve is impinging on pulmonary function. And if a curve progresses far enough/fast enough/young enough, it can help to keep things in check so as to prevent or at least postpone the need for spinal fusion at a young age. With spinal fusion they kill the growth plates on the bone and it prevents that part of the spine from growing any more. I know that Carmell can tell you more about the rib procedure (look for her comments in other subject lines... her son Braydon had the rib done several years ago and it has been a true God send for him). I know there is some discussion about the benefits of the grow rods versus the titanium rib, personally I hear wonderful things about the rib but it is not for every child.

Do your research, keep on asking questions. There is no such thing as a silly or stupid question except the one that is un-asked. Know what I mean? Thats how we parents learn to become the best advocates we can be for our most precious children.

I hope I helped a little, and fell free to ask anything else that comes to mind.

Hugs, Heidi

[emmasmum]

Re brace

Hi Heidi,

Thanks again for answering all my many questions. I'm seeing Emmas O.T tomorrow, so I will definitely ask her about the T-shirt (and quote the details you gave).
Emma had an MRI some time back. They suspected she had Spina Bifida Occulta, cos in addition to scoliosis she has marked sacral cleft/dimple and a large midline haemangioma (strawberry mark right between the eyes!). However they found no split in spine, no spinal cord abnormalities...nothing except the scoliosis (DNA and blood tests have drawn a blank too). They've also ruled out S.M.A (reflexes too brisk) and Muscular Dystrophy. They've now ordered a brain scan and I think they're toying with the idea of cerebral palsy. This might explain some of the strange tics she goes into when she's tired and/or stressed.....but I guess theres a whole world of things "it could be", so time will tell. The original paediatrician spent 2 years telling me she was just a late developer, then moved onto "Well there's no point putting lots of effort into diagnosis, cos it's probably incurable!" No Nobel prizes for medicine there!
Excuse my ignorance of acronyms, but what is Seans underlying condition? Did you have any problems getting a diagnosis? We've seen 8 different consultants in 4 different cities in the last 18 months, but that pales into insignificance besides what you and your little boy have already had to go through.
Thanks for taking the time to help me out!
Best Wishes
Kate

[cdhheidi]

Hi Kate,

Sean is... complicated. He was born (and we knew 5 weeks before he was born) with something called Congenital Diaphragmatic Hernia. This means that there is a hole in the diaphragm, allowing most of the abdominal organs (in his case most, in some only a few) to grow in his chest instead of where they belong. He had a less than 10% chance to survive at birth, but obviously has done quite well considering!

Because his organs were all messed up at birth, his intestines were severely malrotated and at 3 1/2 months they twisted and lost blood flow so he lost a large amount to gangrene. Losing that much intestine makes it harder to absorb nutrition, so he received a central IV line and has gotten the majority of his nutrition that way since that time. 30% of kids born with CDH also end up with scoliosis, though most not as early nor as severe as Seanster's. Lucky kid! Ok, so I am the lucky one to have him in my life to love! Because of the central line, he has a greater tendency to clot and he is also a grand producer of scar tissue (ask any of the surgeons who have worked on him... he is a little scar tissue factory!). That is why his SVC tends to narrow (that is the blood vessel bringing old blood back to the heart from the upper body) and he has needed 2 stents and 9 cardiac caths to open it back up again.

Hows that for a somewhat quick explanation of my little man?

Glad to hear that Emma has had an MRI already, thats a big help I am sure. It unfortunately can take a long time to figure out what is going on with these kids, and some doctors are better than others at being a child's advocate. We left our first pediatrician after he was to dissmissive about Sean's blue color... when we saw the cardiologist he said we are going over to the cardiac cath lab, NOW. That said a great deal... I had needed to push very hard to get him seen by the cardiologist... and that was the last that pediatrician ever saw of my boy as his patient. Our current ped is aweseome... loves my boys, and shows a great respect for my knowledge and understanding of Sean's various issues.

Keep me posted on how things are going and what ends up happening... and if I dont catch you before you go, have a lovely trip!

[emmasmum]

Thanks

Hi Heidi,

Thanks for help. Best wishes to you and Sean. Will keep you posted!

Kate