Need help asap!!!!!!!

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Oh, good

grief, Joan. That's freakin' NUTS. *eyeroll* Child Services because you have your daughter on a DIET??? How bizarre.... I swear.... *muttering under breath*
 
We were in the ER the other day and the triage nurse said to me.. Shes on MAD? Whats MAD? I told her its a diet they are researching for epilepsy and some folks do really well on. High Fat, low carb, blah, blah blah. That my daughter was doing very well. A bit later she came back to me and said,,, I looked it up, youre right,, it is a diet! oiy* No, it came to me in a dream.

I try looking on the bright side that IF someone really did have thier kid on a weird diet, there are folks that will look into it. I just wish theyd leave me alone : ) I hope after each encounter, Ive educated one more person. IF I didnt kill them : )*

I hope everyone well*
joan*
 
Yes parent police.... if it isn't the Emergency Room doctors and nurses, it is the counselors and administrators at the school. It is other parents that write letters to the school telling them they know better, and I am not getting my daughter the help that she needs. It is family members that question, "she stiiiill is having seizures?..." It is specialists that say I don't know anything about that part of the body. Neuros that don't know about the GI system. Endo's that don't know about hormonal seizures. GI docs that say the gut has no connection to the brain... medical workers that use the old terminolgy and yet we are suppose to follow their guidelines,

Sorry for the rant. Rarely do it... JUST FED UP. I feel it is a scam and there are not many that truely know what is UP with this disorder. I think they are all taking an educated GUESS... and I can do that.
 
Joan - they still give 10% juice with HFCS in the ER and jello. Like this is healthy? They truly are clueless when it is mentioned. They have NO idea what you are speaking of when you say gluten free and casein free. I was asked "So what else is there to eat?"
 
lol.. Im beyond asking anyone else to feed her. Even while in the hospital I run home 3 - 4 times a day to get her the right food. I didnt go thru all this to have someone else misfeed her and send us back to hell. They think Im nuts, well ok, Im the nutz lady that myoclonic daughter is 99.5% seizure free. I can live with that!!

I know most folks mean well but some folks just too nosey and imposing : )

joan*
 
Now see,

I probably WOULD have smacked somebody around!!! Sorry, that's bad side of me coming out!!!
 
The last time she was in ER it was for hypoglycemia and they wanted to immediately get some food into her....
They asked if she had any food allergies and I said she is gluten free and casein free. I think I had to say what casein was.... so two hours later they bring a plate of white flour pasta, with tomato sauce and parmesean cheese on top, can't remember the other foods but it was a joke. I feel we are held hostage at the hospital, have to pay for that treatment, and they just tell me I know more than they do about her condition. Take her home and call the doctor. So now I pay $100 for the transportation and another $100 for the previledge to be "taken care of".

My bad side is also coming out.
 
GRRRR I know JUST what you are talking about. My 7 year old was knocked out in the playground at school yesterday (whole OTHER topic lol) and when he was taken to A&E (ER in US), they wanted him to eat something. Now this was a children's ER, and they said they had no idea what a gluten-free diet was....surely there MUST be other children out there diagnosed coeliac??!! It took me 45 minutes to find there was nothing for him to eat in the whole hospital other than an apple....He is now at home (discharged early as children's ward was full and they're not allowed to keep them in A&E for more than 4 hrs), I've had a sleepless night watching him as he had a severe concussion, and until 3 am he was having what I personally would call absence seizures....He was out for between 10-15 mins after hitting his head at the school before he was noticed by other kids (NOT teachers...am going to sort THAT out tomorrow...), If he now starts having seizures too I think I may just have to go and stand outside and rant and rage at god....I've kept him home and touch wood he seems ok for now....but if he ever needs to go to hospital again, I'm taking a picnic hamper for him!!!
 
lol... Robin, I can so relate.

We knew more about epilepsy and Stacy's options than several of the neuros that she has seen over the years.

The ER folks are not specialists. It's understandable that they aren't up to date on all the latest developments. Still, it's aggravating when the on staff nutritionist doesn't have a clue.

Rae, are you still writing your story? You might get some ideas in these threads:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-myths-992/

http://www.coping-with-epilepsy.com/forums/f23/project-promote-epilepsy-awareness-4761/
 
Loudmouth, I

am soo sorry about that. Have you talked to the school since then? What's happened???
 
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