United Brachial Plexus Network, Inc.

Hi everyone. I just wanted to give an update...Cole had botox (internal rotators) on July 25th. Before then, he could not get his hand to his mouth, his flexion was plateaued at 90 degrees (with compensation) and no supination or external rotation was even noted. 3 weeks later, when the cast came off, we saw his arm do things it never had before! Of course, we cried. Now Cole's flexion is to about 160 degrees with very little (if any compensation) and he is supinating slightly past neutral. We are still waiting for that Ex. rot, but still has full passive range of motion. It has been 3 months now and Cole continues to progress. How long will the botox last? I have another appt. scheduled in December. I'm just wondering...what will it be like when the botox "wears off". I know each child is different, but what might I expect? (Always worrying)
But for now...we have great reasons to be so thankful.
If you celebrate it... Have a safe and spook-tacular Halloween!
Nicole (Cole's Mom, 18month ROBPI)

I cant tell you what to expect because Maggie hasnt had anything other then primary done so far but I just want to tell you how excited I am for you and Cole that is totally awesome.

Keep up the improving and keep us informed on how hes doing. Thanks again for sharing.

Hi, Nicole! Congratulations on all the "new" stuff! We also are having great gains with the help of botox. We had our second round in July. It takes about 6 months to completely wear off. It's not like it just suddenly stops, so it's hard to explain. Basically it peaks then slowly declines. You are already in the declining time period. The fact that Cole is still progressing as the botox wears off is really good news! Keep me updated, please. The biggest thing (as I'm sure you know) is keeping him stretched out well as the botox wears off. Keep me updated (you can e-mail me if you want to). Also, as we all know EVERY child is different and recovers differently even with the same interventions. I can tell you that for US, Titus did not gain ex. rotation until his second round of botox. I don't want to give false hope, but for us, that's what it took .

Jamie (mom to Titus 14 months old LOBPI)

HOOOORAY, COLE!!! & Mom too!
Celebrate all milestones...let's have a parade all around the house, banging pots & lids, it is f-u-n & the children love being celebrated and work harder for the next one (milestone).

Hugs all around your house
Gramma Carolyn J
LOBPI/70

Hi Nicole,

Yaritsi had botox injections in July and still continues to progress with the external rotators. I was told it would wear our from 9 months to 1 year but every child is different.

Happy for Cole!!!

I thank all of you for sharing my joy!
Jamie, did your Little Titus have to be casted after the 2nd round of botox?

Gramma Carolyn...you are right! Cole just loves the whole banging the pots thing...at least they get use for something !

Nicole,

We did not cast after his second round because we had it done locally (with a doctor who doesn't cast afterward). At first I was relieved to not have to deal with the cast, but now looking back I wish he had been casted! Titus still did gain the movement we were hoping for. I wonder, however, if it would not have come more easily had he been casted in that position for awhile first! Instead, I was frantically trying to stretch him out ALL THE TIME (much more so even than usual) for those three weeks following the injections... alas, now I will never know how much, or even if, it would have helped .

Jamie