Congenital Scoliosis

[stees]

Support

Cindy,

I echo Carmell's statement of support. I have had times of extreme frustration and anxiety, especially in my son's first year of life when I saw his curve progress massively from a slight curvature to a major deformation. I was really mad at our doctor of that time for not having more ideas or following up more closely (the first was not his fault). We have a better doctor now (for our needs) but as you stated, and as Carmell would agree, we have to be right on top of things. I NEVER wanted to know anything about spines before... and now I still don't know much but I've tried to learn.

Three weeks isn't long, but make them suggest other things (they probably will) if they turn your daughter down for the VEPTR.

Talking about correction... I have had to try to let go of that idea for my son. It's been hard, as I've always been a perfectionist with my own body. But he will never be tall, or even normal sized. He will never be straight. But he is somehow the most beautiful child I have ever seen. One could take it as a lesson from You Know Who on priorities for me, but I know He wouldn't sacrifice a child's health for that purpose. Strange days.

Susan

[Carmell]

Hi Cindy,

I just emailed you, so won't go into much detail here. I just wanted you to know that you and your family are not alone. We have a collectively large shoulder to lean on - I hope you find it useful. Take care and hope to hear from you soon!

[Cindy J]

Susan,

I'm sorry for the mix-up, it was very late last night and I had been researching for many hours. Thanks for the reply. I get impatient sometimes at the length of time we have to wait for potential care, but patience is not a strong trait of mine. I do have faith that she'll be well looked after and that I'll have to accept whatever prognosis and treatment plan. However, I know from previous experience that it's up to the patient and family to seek out the right kind of care, and that care is not always readily available, or in the vicinity of where you live.

Since we're only 3 weeks away from the consult with the folks in San Antonio, I'll just have to wait and see. The main reason I was alarmed about perhaps her being declined right now is that she's hit a growth spurt in height and her curve is beginning to get worse. Since it was already 103 degrees, I'm afraid that too much growth could make future correction difficult.

I think you're all courageous and loving moms! My future prayers will include all of you!

Cindy J

[stees]

Titanium Rib discussion

Hello Cindy,

I think you MIGHT have my child mixed up with Penny's, who was too small. Mine was originally (at age 1.5 years) deemed too small but is now, at least by our doctor at BCCH, deemed a potential recipient. The ribs come in various sizes I think. However, I am going to get our doctor to explain his logic (which I know is sound, but I need to hear about it) for using the Rib instead of a Rod.

Malcolm is 20 lbs at 3 years, and very short. Not much of a torso in height. Sometimes it is so alarming, isn't it? But he is doing well and is very active.

Don't worry about your daughter being too small at this point. They will check her out and even if she is too small now, she may not be later (this is what happened in Malcolm's case).

Stay in touch and good luck. It is so helpful to connect with other parents in similar situations! There aren't many of us across the US and Canada, so it's really useful having this forum.

Susan
mum to Malcolm, 35 months and a going concern
multiple vertebral abnormalities : (

[Cindy J]

Interested in why your son was rejected for the Titanium Rib Project

Dear Stees,

Hi, I read with interest your request for information in regards to your 35 mo. old child. You mentioned that he was not a candidate for the Titanium Rib Project because of his small size. Could you provide more details in regards to this?

We have an appointment in January for my granddaughter Megan who is 3-1/2 yrs. old. She's very small for her age and only weighs 25 pounds. She's slightly under her percentile.

Now I'm concerned that she won't qualify due to her size and stature. I've never seen any requirements regarding size.

Can you provide any input in this area? I would greatly appreciate it!

Cindy J

[jacki]

Hi Susan

I wanted to introduce us, though I'm kind of jumping in 'off topic'!

My 4 year old has Scoliosis (not congenital), and we live in Vancouver! We see Dr Tredwell at Children's and Robert Ford for my little girls brace.

I am always looking for parents in the area to connect with (there's not many of us around!).

I have 'spoken' with Carmell re the Titanium Rib Project, as its something I may look into in the longterm (I really hope to delay the spinal fusion for as long as possible). I was wondering if Malcolm sees Dr Tredwell? And if its him thats looking into the Titanium Rib Project?

Right now Siobhan's curves are 40/30, and they are progressing in the brace.

I look forward to 'chatting' when you have time.
And Happy New year.

Jacki

[Carmell]

Hi Susan,

I agree with Penny - Dr. Emans will be able to give you both perspectives. He was very well experienced and respected in treatment of scoliosis prior to joining with Dr. Campbell and the TRP team. If anyone on this planet would know the best options for Malcolm, it would be Dr. Emans. I met him once, and from all the other parental input, he is FABULOUS. I would trust him with my child's life, if I needed to.

I know several children who have had TRP implants because of kyphosis. They have had very good improvements. One has been able to come off oxygen during the daytime! Each case is very unique, which makes comparing any two cases like comparing apples and oranges. The TRP has improved their design of the pelvic attachment device recently, which means the few problems with not holding a kyphosis improvement has been addressed in most cases. I wouldn't completely write off the TRP for Malcolm. You are absolutely right - his kyphosis needs to be the focus to improve his lung function.

I also know that when children wear braces at such a young age for extended periods, their bones (especially rib bone structure) doesn't fully develop. This makes the bones too soft to support more invasive treatments, like the TRP. My point is to be careful with bracing.

Also, our Shriners in SLC is one of the premiere places (I'm told) for halo traction and rod placement surgery. Maybe getting an opinion from someone who specializes in halo options wouldn't hurt either.

I know how hard this is for you. Malcolm deserves the very best. And so do you. Please keep us posted on how things go. Hopefully you'll find the magic answer very soon.

[Penny Rutledge]

Hi Susan -

Your concerns are exactly why we didn't pursue the Titanium Rib for Dylan. Dr. John Emans from Boston Children's whose been involved in the Titanium Rib project from early on, reviewed Dylan's case and said his kyphosis would not be adequately controlled by the rib. At that time Dylan's kyphosis was progressing quickly, it went from 40 degrees to over 85 degrees in 6 months. Emans also said he was concerned about Dylan's size because (according to him) the rib is quite bulky. Dylan was 20 lbs and about 30 inches long at the time. Emans agreed with our doctor that using the halo traction to straighten his kyphosis followed by putting in growth rods was the best approach. I can tell you more about that if you e-mail me directly.

I would strongly encourage you to contact Emans or someone like him. I was very impressed with him. He is highly respected yet very accessible. I e-mailed him directly (found his e-mail address on the web) and he responded within one day. He reviewed Dylan's x-rays and pictures and responded within 10 days. It was great because we were pressed on time. If we need to look into the rib again I will definitely contact him about it. He continues to ask our doc about how Dylan is doing when he sees her.

Right now we are pleased with the results we have had from the traction and growth rods.

My best to you,

Penny

[stees]

VEPTR

Hi Carmel (and Penny) and any lurkers,

At Malcolm's last doctor visit we were surprised to hear that our doctor is making moves to get the Titanium rib established in Vancouver! He thinks that this is the best strategy for Malcolm.

Now I've done some more reading, since we will probably be entering the VEPTR surgical merry go round later this year, and I'm disappointed that the stats on kyphosis and scoliosis improvement are so poor. Vertebral growth seems to increase, yes, but the curves appear to progress. Carmel, any insight into this? I'm not sure if Braydon was one of the published cases (he would have had lots of CTs if he was). I'm disappointed because I think that Malcolm's kyphosis must be addressed to improve lung function.

Maybe continued bracing will achieve this goal. Our next doc appointment is in March.

Susan
mum to Malcolm, 3 years, congenital scoliosis with various vertebral shapes and problems, height 30 inches standing (longer when lying down), weight 20 lbs or so.

[Carmell]

Thanks for posting Susan!

You are absolutely right - I feel that Braydon needs to be on the lean side, rather than taking on the family trait of being overweight. I can't imagine having an unstable spine and trying to support unnecessary weight. That, and dealing with body oxygenation make it a very fine line to walk. Right now, Braydon is eating well and seems to be maintaining a good weight gain (not too much, not too little). I hope that continues. I hate to be the food police (i.e., don't eat so much, drink more milk, stop eating before bed, etc.).

Give Malcolm a big hug from us!

[stees]

Hi Carmell!

Braydon sounds like he is doing great thanks to your being so "on top of" things. His weight gain is stupendous. Anyway, these kids will be glad later on to be light, as it is less weight to bear and less tissue to oxygenate. I wish I could just chill a little bit.

I hope Braydon's bursa is only a minor thing as the doc seems to think.


Susan

[Carmell]

Just wanted to share that Braydon is small, proportionately small. He is also lean, but not unhealthy skinny. He has two vertical, adjustable rods which you can see and feel through his skin. At the bottom of one rod, he has a bursa (fluid filled sac) caused by the friction of the rod rubbing on the underside of the skin. "MY" biggest fear is that he will develop skin breakdown in this area because of the repeated bursas (doc drains the fluid every 6 months with each expansion surgery). Surgeon isn't worried about that too much. Hopefully he's right and I'm wrong.

I understand the worry about being too thin. I also know that there are added risks with children who have this problem. However, sometimes you have to weigh the benefits and risks and decide when the right time for implantation is (like Susan said). Sometimes the risks of waiting longer are worse than taking a chance now. Braydon was 6yrs old at the time of his impant surgery. If we would have waited much longer, his chances of having a good correction and lung function improvement would have been much less (because of the maturation of the lung tissue, etc.). Braydon was 31 pounds at 6 yrs old when he had his implant surgery. He is now 8yrs old and weighs a whopping 43 pounds - a much needed improvement that could only happen because his body is oxygenating well and healthy.

Sending healthy vibes to Malcolm and Dylan and all! Take care

[stees]

Micro-dudes

Hey Penny!

We give Malcolm 1-2 Pediasures per day too. He eats the most fattening of foods too, like corn chips, chicken nuggets, etc. Oddly enough he doesn't like sugary foods much. When he gets surgical implants they are sure to show through!

Although I'm not glad that Dylan is also tiny, it is nice to have 'company' in this.

Susan
mum to Malcolm almost 3 years, congenital scoliosis diagnosed at birth, bracing and waiting for that time we HAVE to operate

[Carmell]

Hi Penny,

um, Braydon hasn't had his final expansion - just his latest expansion... we'll be doing this expansion thing for another 8-9 years, every 6 months... some fun, huh!? LOL

My point is that Braydon is adjusting very well and takes these surgeries in stride. He's dealing very well with his anxiety and that has made a huge improvement in his recovery lately. Hopefully he continues to do so well. Take care!

[Penny Rutledge]

Carmell -

How exciting to hear that Braydon underwent his final expansion! It is wonderful to hear you have seen so much progress in his lung capacity and overall growth!

It's always nice to hear good news from other parents.