All Journal Entries Journals

Update on Whitney

Jun 30, 2010 - 6 comments
Tags:

update

,

Pain

,

neurologist



I took Whitney to the pediatrician yesterday because her chest/heart/lungs hurt and she was just plain feeling worse.  And since I was sick, I wanted to make sure she wasn't getting something too.  Good news is that she doesn't appear to have anything I might have.  Bad news is that she said the neuropathy/dysautonomia is making her hurt there.  The nerves in her lungs or chest wall are probably misfiring or hypersensitive.  Nothing she could do, but to call the neurologist today.  Stay the course of the nortriptyline increase set for tonight.  But she did give me a prescription of tylenol with codiene if it gets really bad and we can't get her to sleep any other way - but to hold off for a few days after the nortrityline increase to give it a chance.

So last night Whitney was in terrible pain. Electrocuting feelings from her chin down through her fingers and down through her chest.  Oh she cried. It is just the most horrible thing to hear your child cry for help and you can only hold them.  Why aren't these medications working? Why did this happen in the first place?  She woke up at 5 this morning saying her throat felt like there was a lump in it.  Her throat wasn't red or anything (I don't have a sore throat either).  I gave her some water to drink, that didn't help. She asked for something to eat to maybe get it down, so I gave her a tortilla (her request) and she ate that and drank some more. She said it felt a little better and then she went to sleep.  She is still sleeping.  I have to wake her up soon to eat before physical therapy which I am sure she is not going to want to do, but I am going to try to encourage it...but not going to push it.



Comments
Post a Comment
Avatar universal
by CHRISTYDRAKE, Jun 30, 2010
Poor girl!  It is just awful feeling so helpless and not being able to help them.  When Cody is feeling awful I just start asking him-- Do you want an ice pack, a milk shake, soup, advil, etc..anything that might make it a little more bearable.  Since there is nothing medically we can do, what can I do to give him some diversion.  It is usually of little consolation.  But the other night, I gave him a ice pack for his neck and he put it on and said "AAAH".  It felt good.

We got caught up in biology yesterday.  Hopefully we can get ahead so we don't fall behind again.  

1267372 tn?1317834880
by tdavidson, Jun 30, 2010
I do the diversionary thing too.  Getting her to do the breathing exercises Dr. Thompson gave her for pain management has become useless because it hurts to breathe deeply.  Now what?  

I've got to make Whitney do more math today. I bought her a new book for her birthday that she is reading and going to do a book report on "Sir Fartsalot hunts the booger!" I have a gross daughter who thinks that is terribly funny!  We are reading it together and she can read about 2-3 pages at a time before it hurts to much to focus.  Then I read a few pages and then her concentration goes...She is also enjoying Mad-Libs which teaches her the parts of speech (adjectives, nouns, verbs, etc...). Who knew learning could be so fun!

She's up now and says she is having "agony" pain.  No PT today. But I am having her soak her feet...it's not at nighttime, but she likes it...and it's saving me a few "I don't feel goods."

Avatar universal
by LA1989, Jun 30, 2010
Oh poor thing. Good ideas on trying to keep her distracted.
I have been thinking about the epsom salt soaking. Nick asks to do it whenever he is feeling really bad, too--any time of day.
We like to do mad-libs around here, too. Hope she gets to feeling better today.

Avatar universal
by enzymelover, Jun 30, 2010
Poor Whitney! And poor you. I know what it's like to see your child suffering, and feel like nothing you do is working to fix the problem. It's such a helpless feeling (and it makes you really frustrated with doctors after a while too).

I wish I could think of something that would help with the pain (other than pain drugs, I mean). Was Whitney ever evaluated for a skeletal or other structural problem by a chiropractor? Simple falls, and other everyday injuries that kids go through sometimes cause unnoticed spinal subluxations, which can lead to nerve damage and chronic pain.

I took Casey to an osteopath in March and April, to see if there was anything, such as craniosacral therapy, that would help with his severe orthostatic intolerance. It didn't help, but when I told the doc about his breathing difficulty, he manipulated something in Casey's ribcage, and this DID help with his breathing. Unfortunately, this doc didn't take insurance and was very expensive, so when I broke my ankle in May, we just stopped going to him. But the right osteopathic or chiropractic care may be able to help with Whitney's pain and neuropathy.

Another thing we're trying now is benfotiamine, which is basically a highly absorbable form of B1. I bought the cream for Casey (since he won't swallow pills), and both the cream and the capsules for my mom, who has pain and numbness in her legs. Benfo has been unbelievably effective for many people with neuropathy pain, and my mom said it is helping with her legs. I am using it with Casey because his organic acids test showed a deficiency of B1, and B1 "stands at the gate" of the citric acid cycle. (and Casey's citric acid cycle is all messed up, with many blocked metabolic pathways).

Anyway, if you're interested, look up benfotiamine.org, and read the testimonials. I wouldn't know if this could help Whitney, but it's something you could maybe try.

I sure hope she feels better soon.

1267372 tn?1317834880
by tdavidson, Jun 30, 2010
You know you have a point.  Whitney was very into gymnastics and getting ready to try out for the team until she got sick.  She had no obvious injury, in fact at her last practice in advanced tumbling she felt great!  But who knows, maybe she pinched something.  I am going to try to find someone who takes our insurance or at least someone who will do a payment plan!!!

I'll look up the benfotaimine...sounds interesting.  I'll try whatever to help her...



Avatar universal
by CHRISTYDRAKE, Jun 30, 2010
Cody used to see the chiropractor, my daughter still goes once every other week for her migraines and knee problems.  My daughter gets a lot out of it.  The chiropractor even tried accupuncture on Cody to try to help his nausea, but no luck.  It seems we have a hereditary weak neck, me, my daughter and son.  Which could be part of the cause of our migraines.  Frequently I will have a neck ache with it, but not always.

Post a Comment