United Brachial Plexus Network

My 19 month old son is 4 days post mod/quad at TCH and we just arrived home. I have several questions and would appreciate replies to any or all of them. Thank you!
* How can you tell if the child is experiencing pain. He doesn't seem to need the tylenol 3 every 4 hrs. but occasionally gets bouts of extreme fussiness. Not sure if it is pain related to surg, or gas caused by constipatio from the tylenol 3, or upset from SOL splint?
* We have been sleeping with our son because he has been fearful and clingy since surg. I can't even put him in his crib or else he cries uncontrollably and has caused himself to throw up. He was sleeping in a crib until this point...any problems with the splinted arm getting caught in crib?
* My son is an active little fellow and loves to climb the splint has not slowed this down much to my dissapointment. How on earth am I supposed to keep him from bearing weight on his arm during the second 4 week period when the splint comes off during the day. I have a 3 year old daughter as well and have to attend to her needs too. Any suggestions?
Thanks for any comments

(1) pain - children show this is many ways but it is very hard to distinguish pain from frustration from being in the splint. If you see that the tylenol helps the attitude, then I would probably want to continue on with it. If your child continues to have these hard times and nothing seems to be working, then I would contact your pediatrician and discuss alternative means. When Maia had her mod quad, one doctor suggest she take a very small dose of valium for a very short time just to relax her muscles so that she wouldn't have as much pain. I think another woman on this message board also did the same for her child. I hope she reads your post and comes forward.

(2) Sleeping - Maia is a pretty big girl and at 19 months when she had her mod quad she did very well in her crib. The only problem we had was with the blanket getting caught on her splint - especially in the areas where velcro stuck out. So we made sure that every piece of velcro was covered and then we ended up putting her in blanket sleepers so she could forgo the blanket.

(3) Weight bearing - I can only tell you what they told us about Maia - your instructions might be different and the instructions they give you are based on what they did inside your child, I assume, because each child can have a different mod quad (some more pieces some less). Anyway - they said that Maia is not allowed to do any weight lifting sort of activities - she is not allowed to carry anything. I also panicked about the weight bearing becaause Maia did not walk at the time yet. The doc said - if Maia tries to weight bear and it hurts, then she won't do it. If it doesn't hurt then it's ok to do it - don't stop her but also don't actively ASK her to weight bear. So what I got out of that was that weight lifting and weight bearing should not be part of active therapy but if the child just so happens to be able to crawl around - then fine. BUT with all that said - please ask your doctor for an explanation specifically for your child because maybe they don't want your child to be on the floor AT ALL! Please check it out.

I remember that I kept a wagon or the stroller around for a lot of 'rides' during those early days.

I hope that this recovery period goes fast and easy. I remember those days, and in about 3 weeks we'll be back there and Maia will be back in a splint again (ugh).

big hugs,
francine

Hi,
I have a 10 month old who is about 1 and half weeks post mod quad and had the same concerns as you about the weight bearing. I think I might try to keep her in a saucer for a few times a times, so she will not be tempted to crawl. I think she will also go for lots of walks in the stroller, and play in the tub. Like Francine said, our kids will probably try to put weight on it, but if it hurts they won't do it. When I was in Houston they said that maybe for the 2nd for weeks I could keep her in the splint for a little while during the day, but not very long because they do want her to use it some for play. I think I am going to ask around to the OT in Houston and my OT here in town and see what they suggest. I will pass along any ideas I get.
As far as pain, she no longer needs it and I think we quit giving it to her about 5-6 days after surgery. We gave it to her when she was fussy, and it helped, so it must have been the pain bugging her.
My daughter is still waking up several times at night post-op. I would like suggestions too. She is in the crib, and if the splint gets stuck, she has figured out how to get it out. We do keep her clothed always because there IS velcro everywhere.
Would love to keep in touch with you. Let me know how things are going. Can you tell any differences yet? Hannah feels so loose now to me! Plus she really moves her hand so much better. hannah's splint comes off the Monday after Thanksgiving, I will let you know how it went for us. We plan to do it water. Hope to hear from you soon!
Nicole M

Hi Stephanie,
We met at TCH this past week. I'm sorry to hear that your son is not to his usual self yet. When we brought Alexandra home on Thursday, it seems like she has more energy now than before we left. She has always been an active girl (climbing and running), but we were extremely scared about her falling couple days. Even now we don't let her out of our sight. We have had no problems at all about her being in pain. We just have a problem getting the anti-biotic down her. She wants to spit it all up. With the velcro on her splint, we make sure it is completely covered at all times because we just don't want anything to be dragging on her or sticking on her at night. I wish I had more good advice to offer you, but from what I saw with your son, he is a strong boy and will get through these tough times.
Good luck and I will talk to you soon,
Adam

My son had the mod quad last Aug, but he was 3. He slept in a big boy bed and we used lots of pillow so he was pretty comfy. I did sleep with him a few nites when he had problems. I don't remember him having lots of pain and needing meds after the first few days. He definately did get fussy, but I think it was from the splint being uncomfortable. My son was a very active boy too and I worried about the 2nd six weeks as well. Its so funny we just got through it, not sure how. He was even in nursery school for a few hours in the am. My son with his splint on rode his scooter. It was amazing, one handed. I definately could not slow him down. He was running a few times and fell with the splint on. He even scraped up the chest part a bit (It was hot a few days and he didn't wear shirts). I know it is a very stressful time, but have faith you will get through it. Take one day at a time. Hope I helped, good luck.

Thanks for the insight...also thank you so much for your web site, I printed out several pages and brought them to TX with me. It is always so much easier when you have an idea of what to expect.

Nicole, Thank you for taking the time to reply. I would love to be in contact too. Feel free to e-mail any time. It sounds as if your little one is doing well post-op... so glad to hear that. It breaks my heart to see these little ones in any pain. I would appreciate any advice you find useful.
Stephanie B.

Thanks Adam,
I'm glad to hear that Alexandra is doing so well...what a little beauty she is! If you get a chance, would you be able to post the name and contact number of the person you contacted regarding the special children's fund... I know several families here in OR. that could benefit from such a program if it exist locally.
Stephanie B

Thank you! Your little boy sounds alot like my Grant. No fear...nothing is going to slow them down! LOL
Stephanie

HI Stephanie,
I'm glad you are back safe and sound. I hope that Grant is feeling better soon. I called last night and left you a message... please call me if there is anything we can do. Take care,
Sheri