Pain and Growth Spurts

Hi all,

I am posting below a reader's e-mail to me about her young son with CP's pain during a growth spurt. For anyone that doesn't know, a growth spurt for an individual with CP is not a good thing! When you have CP, brain damage that causes problems with muscle tone and coordination, your muscles do not have "muscle memory" and the person with CP will experience regression usually of their functioning and have to have physical therapy to "catch up" again after they growth spurt ends. For Nick, he would fall more, be less coordinated, have more trouble moving, walking with his walker, anything physical, be in more pain, have muscle spasms, etc. It is a tough thing to deal with EVERY time they grow! Anyhow, I e-mailed this reader to give her some suggestions from our experience with Nick, but if anyone else has anything to suggest to this mother, please post it and I can make sure to share it with her if she doesn't catch it on the blog. Thanks!

Blessings:)
Amy

PS-I'm sure there is a more accurate "medical/technical" explanation for this but I am just describing it from our experience with Nick and what we were told by his doctors and physical therapist in terms we could understand it!

Here is the e-mail:


Danielle,

Oh, I was reading your e-mail and just feeling what you are going through. It took me right there. I know EXACTLY what you are talking about, we went through it many times, MANY. I know it's tough and I'm sorry to hear Braden is going through that.

I'm going to be honest, there isn't one perfect answer. BUT, there were times we just had to take Nick's casts off (we used the casts to immobilize him, Nick has low tone, so it's a little different, but it's the same in a lot of ways too) when it go too bad. It was harder when Nick was in school, especially Jr. high and high school because if he missed school from not sleeping and being in pain, and he missed a lot, it made it tough on him to keep up and we had to deal with the school and get the doctor to write notes, etc. We did use Motrin, and warm baths before bed, heating pads, and sometimes Motrin PM, but ultimately, Nick had to take pain meds (Valium) which Dr. Munk prescribed or his pediatrician (or I'm sure Dr. Miller could) for bedtime. We just had to when it was really bad to get through the growth spurt and pain, or he wouldn't sleep well, miss school, etc. Even with the Valium, I'm sorry to say, at times it was still bad and he still missed a lot of school. I KNOW the worst thing as a parent is to see your child in pain. I know it and I'm so sorry, I wish I could give you a "magic" answer. Most people who don't go through this personally or with their kids don't understand. (Nick has SEVERE GI reflux too, vomits most mornings, and this is an issue with sleep and school too for us) The best thing I can tell you is we have learned to do what we have to do to get through the growth spurt and to manage the pain. It's always about weighing which option is worse, and neither option is great, but what will get you through it and be able to function best. I am not saying we did the "right" thing with the pain meds, baths, etc., but we did what managed Nick's pain best because the pain he experiences is what impacts him the most in the most areas of his life. He still has a lot of pain from growth (jr. high and high school is the biggest growth time) but also from nerve damage from surgery he had and just from working so hard physically. I think pain is always something he'll need to manage. Nick feels warm water works best for him, soaking in a hot tub or jacuzzi (we don't have one but my parents do!) and when he did water therapy, that really helped.

Danielle, I hope this helps a little. I know it isn't the most positive answer but I wanted to be honest and tell you too, that it all does work out. For us anyhow, missing a night or two when it was REALLY BAD without the immobilizers was worth a good night sleep and less pain, and we never found a "perfect" balance, but you can't beat yourself up about that. You have to get through each day and do the best for that day. That's just what we've found works for us. We still question what we should do at times, but we're more comfortable when Nick is more comfortable and Nick has his own strong opinions about the pain, which has helped us see how much that negatively affected him and how important his quality of life is. It's a tough balance at times but it will be OK, really, however it turns out.

We'll keep you all in our thoughts and prayers and I will post this (you said you didn't mind, if that changes, just let me know!) and if anyone else then has any suggestions for you, I'll let you know too:)

Take Care and please let me know how things turn out.
Amy

Amy L. Hyndman
10312 Scarlet Oak Dr.
Perrysburg, Ohio 43551
419-872-7522
amyhyndman@buckeye-express.com
"It's all for the Journey"


--- sndgandee@aol.com wrote:

From: sndgandee@aol.com
To: amyhyndman@buckeye-express.com
Subject: quick question about night time muscle discomfort
Date: Thu, 04 Mar 2010 14:57:10 -0500



Hi Amy! How are things?
Braden is going through a growth spurt right now and having a hard time sleeping because he is in so much discomfort and pain due to the tightness. I have him sleeping all night in his knee immobilizers and don't want to give that up because in the long run it'll make things worse. But right now it's bad. It's been about ten days and he tenses up his whole body and whimpers all night. He wakes often crying a lot. I talked to Ann about it and she recommended Motrin before bed and moist heat. She said you guys went through similar things and maybe you would have some ideas...? I know we can call Dr Miller and have him put on either a pain med or something to reduce the tone but I really don't want to start that at such a young age unless we have to.
Please let me know anything that has worked for you guys so we can give it a shot.

Thanks,
Danielle
sndgandee@aol.com