Always More(whiny ramp re: Jess)

[susiestar]

I swear that my daughter is just being picked on by the universe. No other reason makes any sense to her unending problems.

She was in the restroom for a while. Combo of cramps and a good book.

Her leg felt a little numb so she got up, washed hands while leaning on the counter, and tried to walk into the living room. thank you saw her stumble and went to help, but, well, by now you have guessed it:

She fell again. Messed up her wrist but not sure how bad. The doctor would say to go home and ice it and if it swells up a lot or doesn"t get better than to bring her in to be seen.

WHEN is she going to stop getting hurt like this??? The docs are very little help so far.

in my opinion the keppra isn't doing anything right now. She is just "blanking out" and falling way too often. And the lamictal is only at the beginning of week 2.

I wrapped the wrist in an ace bandage. When they did the MRI they put a padded thing on her arm to make sure she didn't pull the IV out. We took it home and she has that over the ace bandage so it doesn't get too banged up.

Isn't it a good thing I went online to a hospital supply place and bought 50 3" ace bandages? Yes. 50. I split 10 between my bro and parents. We are now on the 3rd box that Jessie has needed.

I even carry one in my purse at all times.

How do I find bubble wrap to wrap around her and keep her safe?

 

[Momslittleangels]

How do I find bubble wrap to wrap around her and keep her safe?

That is too funny - - but a mighty good suggestion. Has she always had these issues, or is it something recent? If recent, maybe she has an inner ear infection or something that is affecting her balance. Poor thing.

 

[susiestar]

Thanks, MLA.

This has been going on since early July. No one wants to give answers, treatment, or even medications to ease the pain of having your body shake uncontrollably for 20+ hours a day.

I am just extra frustrated with it tonight because she is taking a sewing class and was in such bad shape that she couldn't go. she LOVES it.

Sigh.

I will stop whining now. For a while, LOL.

 

[klmno]

((HUGS)) How are the relaxation techniques working out?

 

[susiestar]

So far they give her something to focus on when things are horrible. They are not stopping or lessening the movements, but they DO help her force her mind to relax and let the pain go.

She was always athletic and graceful. I was so terribly awkward and shy and inept at any game played with a ball that seeing her run and play with such effortless grace really made me get that warm glow in my heart. She played soccer starting at just barely 4. A year later she had a little friend in school and on the team. The girls looked almost identical and more often than not they pretended they were ponies from "My Little Pony". ROFL!! The two of them usually scored most of the points in the game.

It was just so great to see her be so full of joy as she played games and did other active physical things. I admit to a bit of motherly grinning when, at about 6 MONTHS old she would take her pacifier out and throw it at the 2 little boys who were always squabbling. It was a family and they were awesome with her. THEY thought it was a riot that a 6mo old could throw a pacy across a room and hit her target!

Seeing her shaking and having a hard time walking and doing things makes me want to start screaming. I cannot just let go and scream or cry here at home. It is the LAST thing Jessie needs to worry about.

Thanks for asking, and for letting me vent and rant and whine here. Without this I would be a total whacko.

 

[klmno]

I know you have had her to several experts and testing- do you think there is any chance that this is primarily anxiety?

 

[KTMom91]

Sending hugs and prayers that you can find an answer soon for Jessie.

 

[SRL]

The docs are very little help so far.

If nothing seems to help and doctors are little help, maybe it's time to seriously consider a trip to a hospital like Mayo.

 

[GoingNorth]

I'm thinking Mayo or Cleveland Clinic. Both have top flight neuro and endocine clinics

 

[susiestar]

I do not think this is primarily anxiety. I think anxiety plays a part, but not the primary reason.

We still have a couple of appointments here, endocrine and pain management, but I am looking into how to get evaluated at Mayo, Cleveland Clinic, or even a more established children's hospital like Cincinnati Childrens. There is also one in Missouri that is dedicated to neuro and movement disorders from all sorts of causes (autoimmune, rheumatoid, etc that present as neuro problems) specifically in children.

the ideas are appreciated. So are the hugs and support.

 

[klmno]

Ok, then I place another vote for one of the better hospitals. Just keep in mind, many people have shaking/trembling and no cause can be pinpointed. It's the pain In Jess that goes along with this that has me worried- as I'm sure is one of your primary concerns.

 

[SRL]

I do not think this is primarily anxiety. I think anxiety plays a part, but not the primary reason.

We still have a couple of appointments here, endocrine and pain management, but I am looking into how to get evaluated at Mayo, Cleveland Clinic, or even a more established children's hospital like Cincinnati Childrens. There is also one in Missouri that is dedicated to neuro and movement disorders from all sorts of causes (autoimmune, rheumatoid, etc that present as neuro problems) specifically in children.

the ideas are appreciated. So are the hugs and support.

A primary care physician can make a referral to any of the clinics or hospitals.

 

[Steely]

OK, I am done with these doctors Susie. Seriously. If I was still in TX I would be up there and we would be kicking some booty.

So tell me what the next step is with the doctors. Are they giving you what you need? Or do you need to find another one?

My Dad works at SWMedical in Dallas ~ PM me if you want me to have him set you up with someone there. There are supposed to be the best. And Jess deserves the best.

This has got to stop!!! And I think as warrior Moms if we all band together, we could help you get answers. Just let us know what you need, and we will make it happen.

Hugs and support are being sent your way.