Pamidronate Update

26 01 2011

Since writing my post about Osteogenesis Imperfecta last summer, I have had at least one click per day from someone who was doing a web search for more information. Because of that, and because, shoot, I’m just a generally caring and thoughtful person, I decided to share a little bit more about the treatment Zack and Rainbow have been getting.

I wrote a post last February about hard decisions that a parent sometimes has to make. I didn’t want to bore you with details, but since going to the conference I have realized other parents are going to be in my shoes, trying to make the same decisions. So I’m sharing the information I have in hopes it might help someone else with theirs. The decision reached last year by me, my kids’ father, and our medical team (pediatric endocrinologist, pediatric orthopedist, and registered nurse) was to put the kids on a drug called pamidronate, to be given by infusion.

At that time, when I asked what the side effects were, I was told, “There aren’t any.”

Hey! Great news, right?

When I went to the OI conference several months later (after the kids had received two treatments), I learned some disturbing things.

First of all, putting the kids on pamidronate is a Commitment. I realized this, but simultaneously didn’t realize it. Pamidronate slows the reabsorption of bone (bone continually reabsorbs and rebuilds itself in everybody) so that the bone becomes denser and, as a result, (hopefully) stronger. However, if you stop administering pamidronate while a child is still growing, the point where the pamidronate bone meets the new regular-density bone is at extremely high risk for fractures. A mistake many people have made is to think, “Oh, she’s doing so well; we haven’t had a break in two years!” Then they discontinue the pamindronate (because she’s doing so well!) and break even worse than before. So, now that we’ve started, we are in this for the Long Haul.

Second, not all doctors like pamidronate. One doctor was almost angry as she explained that pamidronate changes the structure of bone and NOT all kids with OI need it. At one point near the end of the conference, a different doctor was explaining a new drug that is similar to pamidronate and a mother brought her child in the room. “Do you think he needs it?” she asked. The doctor asked how many fractures he’d had in the past year. “Three,” she said. “No. He doesn’t need it.”

At this point, my heart had sunk clean into my toes. I’d learned that once you start, you can’t stop (like so many drugs! Drugs are bad!), and then I’d learned with the rate of my children’s fractures, they probably didn’t even need it. (Insert large helping of parental guilt here.) Not only that, I’d also found out they don’t have any longitudinal studies about the effects pamidronate use has on girls and their ovaries. (Second helping of guilt.) My Rainbow, the little mother . . . WHAT HAVE I DONE?

Deep breath.

Anyway, earlier this week we went in again to talk to the medical team. The kids both had DEXA scans (to check bone density) late last year, so we were going to compare the results to the ones we took before treatment started.

They have both made great gains.

Not only that, no spinal deformities were present. One of the main reasons we decided to have the treatment done in the first place is because both children were found to have numerous vertebral compression fractures–like “9” and “6” numerous.

My daughter used to complain constantly about her back hurting. (More guilt! I’m getting  full.) She hasn’t done that, not for a long time.

So, I’m not saying it’s the right choice for everyone, but I really do think it was the right choice for my kids.

And look–Zack is as tall as a street sign, now! So something must be working, right?

No guarantees, warranties, or any other kind of tees are made with reference to the height of this sign. Just so you know.

 

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9 responses

26 01 2011
Rae

Dude, motherhood is life’s most beautiful gift. Unfortunately, it comes wrapped up in a big box of guilt. Seems to me that you’re the kind of person who really works hard at keeping the Holy Ghost around, and he’s usually in touch with The Guy with all the right answers.

I’m glad it is working for your kids. You’re such a fantastic mom- those four really lucked out.

26 01 2011
melissa

Wow, Wendy! What a difficult decision! Please don’t beat yourself up about any decisions you made to the best of your abilities. We never know what is the best thing for our kids. Sometimes we have to make an educated decision and hope we are blessed with insight and impressions. Bless your family!

26 01 2011
Dina

We also struggle with the medical decisions we make for our kids. But, I know we make the best possible decision that we can at the time, with the information given. And that’s the best we can do.

And no achin’ back! That’s awesome for her!

26 01 2011
Monique

Wow Wendy. Everyones already said what I was thinking. You’re an awesome mom, and I love you. 🙂

1 02 2011
Mandy

You are one tough cookie and your kids are definitely benefitting from that strength–figuratively and literally.

15 02 2011
Alison

Please be careful with this drug. It can cause crumbling of the jaw bone as well as other side effects.

16 02 2011
Wendy

Thank you, Alison. We are watching things closely. I hope the kids don’t end up with jaw problems. It has been one of those situations where the benefits and risks are pretty closely matched. I’m hoping and praying we come out on the plus side.

7 03 2012
And There Was Much Rejoicing « The Ear Wax Tastes Like Crayons Blog

[…] Children’s Hospital where we talked to the doctor about Osteogenesis Imperfecta, growth, and pamidronate […]

6 10 2012
Maria

I am so happy to hear that pamidronate worked for your kids. My daughter has a desease known as Renal Tubular Acidosis type 1. This is her primery desease and later on she developed bone problem and the doc’s seemed to be in a fix, but decided to go ahead with the treatment of Pamidronate. She was given 3 dose’s and each one was given after 3 months gap. Amazingly she stoped having fractures, but unfortunetly she did not get the medicen for a whole year and started to have fractures again. Now although she has been given two doses but she is still having the fractures.
Please anyone who reads this, knows or can help in anyway, be it an alternate medicen or some doctor who can help. Please let me know, I am in desperate need of help for my child. Mind you she is being treated for DRTA by a child Nephrologist. It’s the bone issue which has crunched us in circle.
A worried Mom

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