United Brachial Plexus Network, Inc.

Ok We are having the bent elbow problem too. They made him a new splint today at therapy. It is lighter and is bent more to what he can tolerate. But we still have the problem of his arm being so tight. He is 9 1/2 months almost 10 months. He is 41/2 months post primary surgery.His skin is breaking down under his arm and in the crease of his elbow when the therapist rubbed his elbow it started bleeding. I cried because I have been putting baby powder and massaging his arm every day. What else can I do They talked about casting and I was against that don't want any futher damage. They talk about Botox but they have never used it on a baby.
So I don't think so. I have Called TCH and No one has returned my call. I did not see Dr. Nath. Shenaq and Laurent were his Doctors for Primary surgery.Any one know there e-mail address? I feel helpless. He still is not sitting. I just want to help my baby. If any of you know of anything or anyone who can help please let me know you can e-mail me. Thanks reading Carron

Carron - talk to Dr. Shenaq. I don't have his office number but here is Dr. Nath's secretary's number- her name is Brenda and she will get you to Dr. Shenaq's secretary... 1-832-824-3193

Here is Lisa T's email & phone number: lisat@bcm.tmc.edu 1-888-638-8215

Lisa Davis's email & phone number: lkdavis@texaschildrenshospital.org -1-800-634-5437 x3290

I don't mean to cause a problem, but I think you just need to take a step back and talk to Thomas' doctor before your therapists send you further on this whirlwind path.

Botox is something you need to research first yourself - there are many risk factors that you need to be made aware of. I personally don't take it lightly.

Maybe the best thing for you to do is take a video tommorrow and Federal Express it to them. And call down there and tell them you are doing that so they can look out for it.

About the skin breakdown - try desitin. It works really well for Maia's skin breakdown. You might try wrapping his elbow in some soft gauze too so you are creating an air layer in between and keeping the desitin on. He could also be having an allergic reaction or a yeast reaction to the baby powder (don't know if you are using powder or cornstarch) - so I would stop the powder for now and switch to the desitin and see if that takes care of it.

good luck and let us know what pans out,
-francine

Carron,
Have you tried to use baby lotion under the arm a couple of times a day? We also use a ginger/sesame oil to rub on Matthew's arm and shoulder area to keep it loose. All of his therapists notice a difference when it's applied. We haven't had to use it before therapy in a long time, but if he's not loosened up we'll put some on, rub it in and it does the trick. The OT at TCH advised us to use oil instead of lotion to massage because the oil doesn't get as sticky and will heat up a little bit when you're rubbing it in, and your hand will glide better. Have you tried any alternative treatments. Before Matthew saw his new chiropractor/reikki energy therapist he was not sitting up on his own or pulling himself up. He now can do both (well he uses his legs to push himself up rather than both arms to pull) He also is walking better (with our help of course). Anyway just some suggestions.
Cindy

M&M..... the 'ole macro remedy...ginger/sesame oil huh? LOL LOL the stuff is great - do you make it fresh all the time? or is it pre-prepared? Wish we could use it here - Maia is severely allergic to sesame unfortunately...and all other nuts/seeds too.

So does anyone want to know how to make this themselves?? here is how:

Go to a dollar store and buy yourself a cheese grater. You know those four sided graters with the handle on top...that before food processors came around, you would use it to shred cheese and make coleslaw??? Well a cheese grater is just one side of that with a handle and it's small. The grating part looks like a tiny replica (small holes) of what you would have used to shred the coleslaw. Are you with me? LOL I get them at the dollar store and give them to my clients so they can make this oil mixture.

So here it goes - take a little piece of fresh ginger (one inch or so) (not candied ginger! and don't peel the ginger) and use that grater thing to grate it. It only takes a second- it will grate down surprisingly easy! Do this on a plate or bowl.

Put the pile of ginger in your hand (or you can be fancy and get a piece of cheese cloth) - and squeeze the juice out of the pulp. You'll get a lot of juice out of that one inch! It's surprising!

Put the juice in a bottle (like a salad dressing bottle) and add some sesame oil. Shake it up and apply. Since you are using fresh ginger, you will have to refrigerate it and then chuck it in a couple of days. Best to make as little as possible so that you just use the fresh juice but I know this is time consuming. Using it fresh really grabs the energy of the ginger - it has tremendous heating energy.


YUCKY NOTE: do NOT use the toasted DARK sesame oil...YUCK!! for skin care! great for chinese food hehehe

HEALTH WARNING: NEVER put anything ginger on the head or face or near carotid arteries (side of neck)

ALLERGY WARNING: both ginger and sesame are common allergy foods. You may want to test some on the skin in a tiny area first and see if there's a reaction before just sloshing it on!

PS - if you want to make it fresh every time you use it and you have too much ginger juice around - dont' put it all in the oil... put the juice in your next hot bath!! mmmmmmmmmmmm

or you can put some in your next cup of herbal tea - very warming (not too much... it'll be spicy...unless you like it spicy!)

or put it in your dinner....(stirfry anyone?)

or you can make a ginger compress.....

hot water / ginger juice / washcloth
put it on your shoulders? on your tummy?
just keep on dipping the cloth into the ginger water and wring it out...
you can make the washcloth stay warm for a long time by putting a hot water bottle on top of it

The ginger compress IS NOT recommended for someone with a bpi unless they have no problem feeling the heat.... it's an easy burn situation so please be careful with this.

Sorry , kind of went off on a tangent here...

How is Thomas? Any news from the docs?

Keep us updated ok??

big hugs,
francine

Carron

Hope you hear from the doctors soon...

My Mom used warm olive oil on me for massage.

When I had babies she insisted I use cornstarch in the diaper area... said it was better then powder...

Desitin is great for sensitive skin...since my grandkids are all fair like me... it works wonders on lots of things...

Francine

I want to try that ginger oil on the unaffected arm that is driving me crazy with stinging and burning and pins and needles - WILL it help ---???? I think it sounds like it might reduce swelling too????

I hope so sent hubby to store already for the stuff...
thanks
Kath

Kathleen- the ginger oil bring heat to an area. When I use it on a client and get it on my hands I feel it go through my body.... I have this visualization of little tiny heating pads running through my body and it settles in all the areas that are stuck and they just sit there until it's well heated and relaxed. It is a macrobiotic remedy that is often used for muscle tension, muscle spasm, things like scoliosis, etc...to 'melt' down an area... hope you like it and hope it helps you in some way. (or you'll just be smelling like chinese food for a while! LOL)
-francine

kathleen - when there's redness caused by an area not getting air because it's not moving or because it's contracted ...in bpi's in the fingers or in the elbow crease or in the armpit.... the redness (which may also be damp and smelly) is usually yeasty. Cornstarch makes this yeasty stuff worse...it feeds the little yeasty buggies. Just an FYI.

We have the oil prepared by the acupuncturist - he is also a master in oriental medicine. It's awesome when you can get an ear infection cleared up in four hours. I feel so fortunate that my kids aren't alergic to anything so far (keeping fingers crossed).
We're probably going to start making the oil ourselves so it's more fresh.
Hope Maia is doing well.
Cindy