stupid nursing staff interfering with treatment decisions

[Guest guest]

ok, I'm very sorry, but I need to vent, & I figure that you are the only people

who truly understand our situation.

Both my girls have LD, as do my husband & I (I gave LD to my daughters before

they were born - I was bitten by a tick in Japan in 1987 - we don't know how my

husband got LD). One of my daughters is sick, but is able to go to school part

time (we homeschooled them for 8 years, but she is at college now - our yr 11 &

12 is called college here), and has a part time job - but she rests a LOT (she

came home from Girl Guide camp half way through this weekened because she needed

a day's rest & then went back out to camp - it's a 6 day camp).

Our sicker daughter has been in a wheelchair for 15 months. Both my girls got

LD from me before they were born, but this daughter has had it tough all the way

through - seizures, ADHD, dyslexia, hearing impaired, bowel problems, CFS etc.

Last October we had to stop her abx because she was having too many

complications - she switched over to the limited Cowden Protocol that had worked

so well for her sister & my husband. Unfortunately it didn't work for her &

within 3 weeks she was completely paralysed, & unable to swallow & having

trouble breathing. After fighting really hard, H had a picc line put in & we

started daily Rocephin (the nurses come in each day to do it). (I should say at

this point that even though we are in Australia, we just spent a year in the US

getting treatment - my husband is American - & we do phone consults with Dr H in

NY state, & he & his NP have been fantastic).

H has been on IV Rocephin daily for the last 10 weeks. She is doing really

well. She was completely paralysed, but can now walk & often without a stick

(although out of the house she is still in her wheelchair). She is starting to

do things for herself - like get lunch (hurray). She's doing physio ( &

improving a lot) & is about to start brain rehab (neuro-feedback).

OK, that is all the background. Yesterday in our review with the Dr who is

supervising her treatment (H is his first case of LD, as we don't really have a

lot of it in Australia) we were told that the nursing service want to move H on

to somewhere else (although no other service will take her on because she is

under 18) because we are costing them too much money (they are providing her

meds) & because they don't see that H is getting any better (which is absolute

garbage). Because they are putting pressure on the Dr, he has decided that H

has to get a 2nd opinion from an Infectious Diseases Dr (who has no experience

of Lyme Disease). gaaahh. We are all pretty stressed about this situation.

Our problems with the nursing service started when we had to constantly ask 1

particular nurse to wear gloves (all the other nurses do). She then started

being petty & causing problems, and this is the latest of her attempts to have

H's treatment stopped (she tried before Christmas to have H's IV treatment

stopped because " I don't see why she can't be on the oral abx? " ). We call this

nurse, Nurse Ratchett. Of course she has no experience in treating LD, but

see's herself as an expert on it. grrrr

It is so frustrating that we have to fight for treatment and fight for services

- we should be just left alone to have the Dr make the clinical decisions about

what treatment my daughter needs, & focus on getting well. My daughter's

comment was " if I had cancer, I wouldn't have to put up with this garbage "

(actually her phrasing was more colourful than that, I've paraphrased).

Anyway, that is my rant - I feel better now for letting that out.

Thanks a lot

Nikki