Hands too sore to open a bottle of anything???

susiestar

Roll With It
Jessie has been complaining that her hands are too sore to open bottles of anything. Her keppra (even in a bottle that is not child proof), canola oil, milk, shampoo, almost anything. She doesn't really complain, she just brings them to me to open.

This has been going on for months - since summer. It finally hit me that it has been going on so long. I didn't catch on because she doesn't really complain, she just brings me things to open and says she can't seem to open them. But I started asking questions about WHY she can't open things in the last few months.

I looked at her hands the other day. Her knuckles were BLUE. Not the whole hand, just the knuckle. Almost looked bruised, but not quite. When I GENTLY touched the joints I could tell that it was very painful. And they were clearly swollen.

This is in addition to the back, knee, shoulder, and neck problems we have been dealing with for years.

Do I start looking for a pediatric rheumatologist? Ask my rheumatologist what to do? Start with the pediatrician (who ends up blowing me off as "looking for problems in a healthy kid" when SHE brings these to me, and she ISN"T a "healthy kid").

Suggestions?

Thanks.
 

Hound dog

Nana's are Beautiful
Susie, whatever you do I'd skip any doctor that blows you off. You'll be ignored again anyway and waste your time and money. How about perhaps starting with a 2nd opinion with a different pediatrician doctor? Find one that comes highly recommended by both nearby hospitals and other parents. You could also ask your rheumatologist for suggestions. But I wouldn't skip a pediatrician doctor altogether. Blue knuckles incidcate poor circulation, might just be the swelling......but I'd think her hands would have to be mighty swollen for her knuckles to be blue.

Hugs
 

artana

New Member
Susie,
Find another doctor. I know that I stuck with a pediatrician I didn't like far longer than I should have...better the devil you know than the one you don't. But, trust me, there are people out there who listen and take things seriously. Find a good general practicioner and s/he will be able to guide you.
 

TerryJ2

Well-Known Member
She's definitely got something. Depending upon your ins. I'd skip the GP and go straight to a rheumy or at least an internist.
Good luck!
 

susiestar

Roll With It
We only have 2 pediatric practices in town. One is very high tech but they are very sloppy and I don't trust them. The other has 7 pediatricians. The male docs think every female old enough to have a period is only having problems because her period. The female docs vary. We have seen them all at one time or another, but they don't put much stock in a child having arthritis type problems.

The pediatrician rheumatologists won't see anyone with-o a referral. I am not sure I can get a referral, even though our insurance does not need one. I don't think any of the peds will give a referral.

Part of my worries over this stem from a very very strong family history of arthritis and other problems starting at about the age Jessie is now. And a number of these relatives are my age and have been in wheelchairs since they were 10-14 years old. JEssie LOVES sports and being active. So I am worried.

Thanks for letting me know I am not exaggerating things. Because my hands are NOT strong and if I can open a bottle Jessie cannot, well, to me it signals a real loss of function.

I will keep you posted as I learn more.

Susie
 

Lothlorien

Active Member
Call your local childrens' hospital and get an appointment with a pediatric rheumy. You won't need a referral if your ins doesn't require it. You might have to wait a while to get an appointment, though.
 

artana

New Member
I think what Lothlorien says makes sense. If you are that worried about her, you should definitely make the appointment. I don't know how long a drive it might be, but it will be worth it to get someone to take this seriously. You need to trust your gut instinct, because if you're wrong it will just be an annoying drive. If you're right, you might be able to get some medicine and advice for her to make things bearable.
 
Susie,

I also agree with Lothlorien. I'm glad your insurance doesn't require a referral when you need to see a specialist. If you have to wait a long time for the appointment, ask if you can be put on a list to be called in case of cancellations. If they won't call you, I would call them about once/week to see if there is a cancellation available. At the same time, I would also call your rheumatalogist and ask for some advice.

In the meantime, even though your pedi will probably want to blow you off, I would get Jessie in to see her. Your pedi won't be able to ignore her swollen blue hands. Maybe, she'll be able to prescribe an anti inflammatory drug Jessie can take until you can get an appointment with a pedi rhuematologist.

It really bothers me that pedis won't consider the fact that children can have arthritis. I'm sorry there aren't any more enlightened pedis in your area.

Please update and let us know how things are going. This has me very concerned. As always, you and Jessie are in my thoughts.... WFEN
 

dreamer

New Member
EEEeeeeeeeeekkk !! Im so weary of dismissive docs. Grrr. My son has CP and seizures and I KNEW it when he was a newborn....acctuallly at delivery his delivering doctor said it BUT......somehow post delivery, ALL the docs "forgot" and dismissed MY concerns? ANd it took till Shriners permitted me to come without a referral to get him formally diagnosis'ed in spite of my monthly calls and apppts etc to his pediatrician and whatever. GRR. By then he was 8 years old! The docs here actually did blame it on me seeking something wrong in a heaalthy kid and my crummy parenting permitting him to "get away with his actions"? and yeesh.they included my son in difficult children home behav mod and all to try to correct things? Yeesh YUK. ACK! I wanted to take his ugly MRI films to those people and.......um, ok sorry, nevermind.

A new doctor. I vote with the others, another opinion, new doctor.
I took myself in early on in m disease process.with similar symptoms..and I was dismissed......and soon I wound up a quadriplegic-------and lived as one for 3 long years.......becuz docs just keep dismissing me.
Then I spent 2 more years vastly undertreated.......
and now finally......I am doing much better, I once again walk and bathe myself, brush my own teeth, dress myself, and yes, open bottles myself again. and I have been working hard the last 2 years to regain these abilities and strengthen them and whatever.
Yes, please.another opinion. Poor child, poor you. Horrible dismissive docs. ACK grr! Gentle hugs to you guys!
 

dreamer

New Member
sounds like your local docs are like mylocal docs. sadly when my son was tiny, I was so busy with difficult child stuff and husband stuff and their docs and symptoms, it never occured to me just how bad our local docs were......(now ALL our specialists are 3-5 hour drives away to the city)

Not to scare you BUT when I had son in city with his eye......and we stayed in the ronald mcdonald houses? there were several children with rheumatic diseases in the hospital, their moms at RMH with me......and...very sad. one young teen girl wound up on Hospice due to rheumatic illness.

I have a friend whose first child is bipolar, then her child 15 years younger than her first child was 3 months preemie and profound CP......and a year later, another child.....they assumed at first (they being docs) was only mimicking her older sister..nope, by age 5.......serious symptomatic RA.
Yes, call a childrens hospital. I know first hand how awful hard it is to have docs so far from home.we use RMH a LOT. and it was a hardship for me cuz husband could not watch the other kids alone, and I had noone to help....and the travel was so hard for me due to MY illnesses.......but........it made all the difference in the long run. For difficult child and her city specialist psychiatrist at a childens hospital/teaching hospital......for my son with his CP and later for his eye.....for me and my Rheumatic illness.....and I am sure it would have been helpful for easy child and her complicated pregnancy.
 
Susie,

I don't know why I didn't think of this yesterday, but could you insist that she have x-rays taken of both of her hands? Hopefully they won't, but if the x-rays show proof of arthritis, then the docs will have to take you seriously.

Thinking of you and Jessie... WFEN
 
F

flutterbee

Guest
What Loth said. Also might want to try an Urgent Care doctor. When my repeated kidney infections were being treated, but otherwise ignored, it was an Urgent Care doctor that ordered medical tests.
 

susiestar

Roll With It
She has had repeated Xrays, including some of her hand because she landed on her wrist when she fell once. The "radiologist" who looks at Xrays here just says they are "normal". Even with a clear break a friend's son was sent home because everything was "normal". So apparently this child had an extra joint in the middle of his forearm, b/s the doctor said it was normal and his arm was bent at a 30 degree angle between the wrist and elbow!

I have found 3 pediatrician rheumatologists on our insurance in our state. I am trying to get an appointment for her. Sadly, even with-o the lack of referral needed, I am getting the run-around by the person who books the appts. We are going to see the pediatrician next week and I will have THEM schedule, even if they don't want to. I just get sick of all the doctor visits.

Sigh.

Thanks for being so concerned and having so many ideas and suggestions for us. i really appreciate it.
 

eekysign

New Member
Could be Reynaud's. If they're regularly/sporadically swollen and/or blue, that kinda sounds autoimmune. Good for you with- the pediatrician rheum's. :)

My best friend's got a autoimmune cluster, Reynaud's is just a part of the fun. She also has trouble opening stubborn jars and has blue/gray knuckles, mainly in the winter.
 
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