More Jessie

[susiestar]

I am sad to say my daughter is NOT getting better. She shakes more violently and it is almost constant. She can suppress it for very short times, but it is very painful when it comes back. We have been able to get a few nights where she slept most of the night, but very few.

She is usually in with me needing something about every hour or so at night. I have been sleeping most of the day because of this.

The neuro who prescribed the lorazepam gave us 30 pills with 1 refill and directions to take 1 every 4-6 hours. When we called for refills he again gave 30 pills. Then he YELLED at me over the phone about how she should only take 2 pills a day and I am turning her into an addict!!

I am furious. Lorazepam makes the shaking less severe. It is a very low dose - the lowest them make according to the doctor. It is also one of the treatments for movement disorders - but NOT when taken just 2 times a day.

There was email from the superintendent that we are working for with Jessie's school. She is going to try to do just math this semester. Next semester she will finish up this one and then she can use summers to catch up or add a semester to high school. She is set to graduate before age 18 as it is, so an extra semester won't mean much.

If it turns out to be too much we will do a 504 and have her sit out the semester.

Anyway, we are waiting for the endocrinologist appointment.

She HAS gotten in touch with a few friends on facebook and with KT (who's mom is on this board!). It has lifted her spirits a lot.

Thanks to all of you for your help and prayers and good thoughts. They mean the world to me.

 

[everywoman]

Susie---as you know my Jana has had her share of medical issues over the years. The poor girl had 4 surgeries during 9th grade. And then the knee issues as well. She is older than Jess---but may be a good "big" sister role model. She has a fb page as well, and I'm sure she would love to "mentor" Jess from afar if you would like her too. If so, pm me and I'll give you our info. If you want to check out her page first, feel free to do so. But I can promise you it is very sedate for a young lady of 20 (well, 20 on Monday, Nov. 1)

 

[susiestar]

Just an update - I have been extra frustrated with the pain that she is feeling, as I know you all understand.

I finally found a listing of pediatrician pain management docs in my state! I am going to call them in a few hours and see what I need to do to get her an appointment.

I was floored to find out we HAD pediatrician pain docs, much less 3 of them. I might call my pain doctor also, but I don't think he does kids.

Hugs to all!

 

[graceupongrace]

Susie,

Every time I read one of your posts about Jessie, I get so mad at the docs who try to brush it off as "just" anxiety or imply that there really isn't a problem. I ache for Jessie -- and for you.

(((Gentle hugs)))

 

[trinityroyal]

Susie, I'm so sorry to hear about Jess's continued suffering. It makes my blood boil that the docs are not taking you and her symptoms seriously. When they can see her shaking uncontrollably how can they assume it's just emotional? Honestly!

I hope the pediatrician pain management docs are able to give you some answers and treatments that work for Jessie. In the meantime, know that you're both in my thoughts and prayers daily.

Hugs,
Trinity

 

[Shari]

I am so sorry for Jess.

Its not much, but tell her the board auntie's are praying for her. This seems too urgent, to me, to justify the wait she's having to endure.

 

[mstang67chic]

I don't really have any advice but sending hugs to you both.

With my attitude, the only thing I can think of is when they find out what's going on...go back to the idjit doctor and throw it in his face. Hard. I know docs are human and make mistakes but as other's have said....for this guy to just blow it off is completely unacceptable. And even on the off chance that it IS some manifestation of axiety...LOOK AT HER! SOMETHING needs to be done about it!!!! (*&)*%$ nimrod morons.


Hugs.

 

[susiestar]

Thanks to all. Jessie really does appreciate all the prayers. She says she has Aunties all over the world praying for her.

Today is yet another battle. I need the pediatrician to write a note saying she needs to only have 1 class. doctor can't see why, just because seh is shaking so much, that she cannot do bookwork. Gee, how do you write out math problems, etc... if you are shaking so hard that you end up in extreme pain.

Tomorrow I will flatten the doctor. I think it may be a tough battle but I will do what is needed.

Thanks again. I have a feeling that the urgency is growing also.

 

[Steely]

I just can't imagine what you are going through. I am so sorry.

Please know many prayers and hugs are being sent Jessie's way.

 

[KTMom91]

Sending prayers and hugs.

Glad Jessie is enjoying her chats with Miss KT!