Feeling helpless...when your kids are?... (1 Viewer)

[todd s]

My 11yr old daughter was diagnosed with scoliosis last year. After going back for check-ups her curve was getting worse. So she was just fitted with a body brace that she has to wear for 18hrs a day for the next 3 years. As per the doc's instructions we have been gradually making her wear it. Right now she wears it to sleep. We aren't even at the tightest setting and I can see how uncomfortable it is...sometimes even painful. She has been very good about it. But, as a parent nothing is worse than seeing your kid suffering or in pain. I was watching Supernatural last night. And in show the father Gives up his life to save his son
. And I really thought how true that is. I would gladly change places with my daughter so she wouldn't have go through this.

 

[Bob McLaughlin]

Todd, I feel for you. Last September our beautiful baby daughter was only 1 day old when they found out she had severe hip dysplasia. Nothing felt worse than strapping a stiff brace on a helpless crying baby, imobilizing her and making her uncomfortable. Just holding our little soft baby felt entirely different now--she had this ugly hard thing strapped to her waist and legs. She had to wear it 24/7, and if we even had to check her diaper we had to remove the whole thing, then strap it back on again. She hated it, and you cannot explain to a newborn why she had to go through it. We felt awful for her because she was such a good-natured little baby, we felt she deserved better. We worried it would affect her personality forever.

There were many items that people had given us for the baby that were now useless: certain outfits, baby chairs, swings, etc. The carseat was very uncomfortable for her because her legs had to be sticking out at a right angle to her body, so it was a very tight squeeze. Also she could not sit up in the stroller so we could seldom take her out. What's worse, when we would go out, we would see all these other people with their perfect little babies who didn't have to wear braces. It seemed so unfair.

After 6 months of the brace, many exams, ultrasounds and X-rays, the orthopaedic surgeon gave us the good news: surgery would not be necessary, and the baby could take off the brace finally. What a joy to see our little girl free at last! By the second day out of the brace, she was already able to roll onto her side. Nowadays she can pull herself up to a standing position and should be able to walk by Christmas. Our worries that it would impact her personality and attitude were unfounded--she is still a good-natured baby with a quick smile.

I know our situations can't really be compared, but believe me, I understand how helpless it can feel to see an innocent child that you love in this kind of a situation. I would suggest reaching out to the internet community, we were able to find a message board for parents of children with hip dysplasia and it was nice to know we were not alone. Scoliosis is fairly common and correctable so I would guess there are other parents out there in your situation.

Good luck!

 

[D. Scott MacDonald]

I wore a similar back brace 22 hours a day for about 4 years when I was a teenager. At the time it seemed to make a difference, but I don't think that was much of a long term benefit.

The good news is that things like this are very common and are seldom debilitating. As an adult, stretching and core excerises seem like the best way to keep my back in check.

 

[SethH]

Todd - are you guys using a traditional hard brace that fits kind of like a corset? I was watching my local news a few nights ago and they were talking about a new kind of brace for this situation that is a flexible brace that isn't noticeable under clothes and isn't nearly as restricting. My mind went straight to your post. Unfortunately I didn't get a brand name or anything.

I wish you all the best.

 

[Jay H]

Todd: I second that motion. You might be surprised at times how "alone" life makes you feel, especially when you may see a lot of other seemingly healthy babies out and about. But a support group is a great place, not only for being with people who know how you feel (you are not alone!) but will obviously have real-world advice on how to cope, on how to do your best as a father and as parents and maybe more importantly, how to take care of yourself. Don't forget that you are a part of the family and your health is as important as your daughter. I learned that when I lost my sister in August. Your doctors/social worker should be able to put you in touch with groups that may be of interest so that would be a start, or the internet as usual is another place to look...

Jay

 

[Michael Warner]

Yep, that's one aspect of parenting that they don't usually cover in books and seminars -- an almost debilitating at times empathy for your children. Last night I put my youngest to bed with a high fever. No big deal, just a virus that's going around but I hardly slept a wink knowing that he was suffering in the next room. I would gladly take on all of their ills and pains but I think it's knowing that you can't that makes it so hard.

All the best to you and your daughter.

 

[Brandon_T]

Bob, my son had severe hip displaysia too. He wore a pavlik (sp?) harness for months on end, but what a relief to get that thing off. Is that the same harness your baby had to wear?

 

[todd s]

Its a hard plastic brace. But, it can be worn under clothes. So far she still has been very good about it.

 

[D. Scott MacDonald]

Yup, that's the one that I wore. After I got used to it, it wasn't such a big deal. Of course, I still wouldn't want my own children to go through this.

 

[Kirk Gunn]

As the father of a healthy 12 yr old girl, my heart goes out to you all. My friend's 2yr old grand-daughter has spinal bifida and I try to stress to my own daughter that she needs to help those less fortunate. Breaks my heart to see the most innocent inflicted with such conditions.

I hope you all are getting the hope and support you deserve, and you have my deepest respect. What comes around goes around, and your kids will be a reflection of your caring and unconditional love.

 

[Kirk Gunn]

Was just passed along this quote from a co-worker whose 8 month old daughter just completed a bone marrow transplant:

“A hundred years from now it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove, but the world may be different because I was important in the life of a child."

 

[Chris Lockwood]

Have you tried a chiropractor for your daughter?

 

[todd s]

Chris, No we haven't.

 

[Chris Lockwood]

You might give it a shot- I'm not saying they can "cure" the condition, but they are pretty good for pain relief.

I had a lower back problem off & on for 15 years that was fixed in a few weeks of chiro visits.

 

[Bryan Ri]

I'd agree with Chris, a chiropractor really did change my life. I had terrible back pains (spondololisis) and I'm certainly a new man from my treatments.

The best advice I can offer, Bob, is to just keep being a good parent. Kids have tremendous resiliance, so every once in a while remind her how proud you are.

 

[Bob McLaughlin]

Yeah, it was the Pavlick harness. Glad everything turned out well with your son! One of the worst parts was not knowing if it was going to work, dreading potential surgery.