Congenital Scoliosis

[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

[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]

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

[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!

[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