United Brachial Plexus Network, Inc.

my daughter anna (19 months) is 4 weeks post mod quad.
tuesday for the first time we took off her splint in a big tub of warm water.. it lasted ten minutes before she started to cry and my husband said enough.. yesterday (wednesay) was better, while watching disney yesterday morning we had it off for about a half hour, then again in the afternoon watching a video, and again in the tub last night, so total it was about a hour an a half yesterday..she actually used her hand in the tub, i have this thing we keep her tub toys in she loves drinking water while in the tub she got some water in the container picked it up with both hands and drank from it.. I was encouraged she was using her arm.. from what I've read on here i guess it takes time to work up to a entire day.. anna seems to find security in us supporting her arm, when ever she seemed really distracted I would let go slowly but when she realized I wasnt supporting it she would fuss.. I do have a question, last night before anna's bath she took off her last two stripes on her incision.so do i start scar massage now??whats the best cream for it? also has anyone else noticed their child getting really dry skin patches after surgery?? after we got home she started to develop dry skin patches all over.. her incision looks pretty good..
sorry for the long post.. any tips or suggestions greatly appreciated..
marg

It is definitely time that all the steri-strips were off. Usually, that's 10-14 days post-op.
Has the incicsion been checked by your pediatrician to make sure there is no infection? If not, that needs to be done first.
Pure Vitamin E or pure coco-butter is good for scar massage. Remember to start off very gently; do not apply deep pressure when starting scar massage.
Good luck!

Peggy

Hi Marg,
I've been meaning to write to you! We have just been so busy with holidays and other activities, I've kind of blown off everybody. Sorry! So, how are you guys? We took off Hannah's splint too and we are having the same issues. She had it off and on throughout the day yesterday. She only lasted about a half hour at a time as well. She is now getting her arm almost all the way down. She has been to the PT and we go 2X's a week now. The stretches they showed us really help to loosen her up. She hates every minute of it though. Yesterday we had it off 4 times and a total of 2 hours. Our PT told us it might take a good week or so before it is off all day. They told us to put her in an exersaucer so she won't be putting any pressure on the arm but still try to use with the toys on it. We have started scar massage with vitamin E lotion. She still looks like she has a stitch stuck in her incision. I'm about ready to have that looked at. But otherwise she looks ok. Her scapula seemed to have become a lot more pronounced since surgery, but they say that after strengthening it, it should stay in place. Hannah only had some irritation in the creases of her arm. Glad Anna is doing well. Continue to update me on her progress. X-mas day will be special for us, won't it!
Take care, Nicole

Hi! We also took off Addyson's split about 2 weeks ago. She too had a suture left, but the other day I rubbed my finger over it and it just fell off. I never did call anyone about it, but her incision is fine. I bought some cocoa butter lotion that has vitamen E in it. Do you think that's ok? Also I wanted to write that I think Addy's scapula is more pronounced since the surgery. It must be pretty normal for that to happen I guess. Her range of motion has definelty increases. But Addyson is giving me alot of trouble with her exercises. I am trying not to be so structured in her routine. She hates for me to start messing with her arm. I have been singing songs that she has to move and extend her arms with my assistance. Do you think that is enough of ROM for her? I just have the feeling that she is NOT interested in sitting down with me and doing 10 bicep curls, touching the top of her head 10 times, ect.... So I am trying out this.

Plus my OT will not see us until she has written permission from Dr. shenaq's office that it is ok to start her therapy again. I need to call them, but I just think it's weird that they wont go ahead and see her. It really frustrated me. I have gone once since it was ok and the only things they did with her were playing with bubbles and playing with the ball. I just feel there is something we are missing. I feel like my ot doesn't know anything about Erb's palsy and the Mod Quad. Should I ask to see someone else or is this normal "therapy". These are also the people who wanted to discharge totally before the surgery came up. SOrry I went a little off subject . Forgive me. Thanks Laura and Addy

Hi Laura,
Nice to hear from you. Nancy Conte is one of the OT people we saw in Houston and she told us to have our OT call her for a regimen or prescription they would give to your OT as far as what they want your child to do. We were told to go twice a week for therapy and then we do ROM 3-4 times a day right now. Her appointments consist of a lot of stretching. I believe we are to do ONLY passive and active range of motion exercises. Try going to your local drugstore and getting some MOIST-HEAT. It does wonders for loosening the arm and the tolerance level. Our OT suggested it for us. I think once your OT gets the regimen you will be set. Keep me updated on your little one. Looks like baths help too with the patience issue. Hope to hear from you soon!

I understand why they won't treat without a new prescription - it's because every time there is a surgery it's considered a new diagnosis.

peggy,
she saw her pediatrician ten days after her surgery, she said her incision looked really good.. she goes back for her 18 month shots on monday, I put them off until after her surgery... her incision does look good..
thankyou for your reply..
marg

nicole,

we are also busy with holidays and family visiting..anna did great yesterday,she had her splint off four hours (in two, two hour periods)it was interesting watching her play and even at one point attempting to climb..also noticed she would rest her arm on something anytime she had the chance, other wise it was straight out. she actually pushed her splint away last night and ran crying down the hall..
X-mas day wil be very special for us..
will e-mail u..
take care,marg