Dr availability

First of all, your child’s health is the most important thing here, not school attendance. By law they have to provide your daughter’s schoolwork for when she was out. They have to accomodate her. They are there to serve you not the other way around.

I have had the same kinds of problems with appointments. My wife has to drive me to the doctor if I take my medication but she burned up most of her time off early in the year, so that left me not taking my meds just to see a doctor. That way of doing things also had me missing many appointments.

I have gone through 6 neurologists since February 2005. The last one was a good one from Emory University but with one serious problem. I was a guinea pig for their fellows to test out all the previous tests I already had, which left me with scratched up vertebrae from botched spinal taps. So they wanted to have a radiologist perform it – OK. I waited a week and no one called with the appt so I called up. They said talk to radiology- I did, they never got any order – called back – they said they faxed it.
I had to stop taking my meds just to keep track of that bs and it took me a month of calling for them to fax one sheet of paper to another office in the same hospital. I dont have a neurologist right now.

The good ones are bound to be backed up for at least a few months and there is no way around it. There just aren’t that many skilled people who are able to treat these complicated illnesses. I have had to wait months to see docs and most of the time it wasnt worth it.

I think you have your priorities mixed up and Im not trying to be insulting here. I understand the work-appt conflict thing but schools deal with ill children all the time and have set ways to accomodate you and your needs without comprimising your child’s education.
I’d suggest calling your school’s principal or nurse and telling them that your daughter will need her schoolwork for days she has to be gone.
You aren’t “taking advantage”. Your daughter is seriously ill. You aren’t keeping her out to watch tv and play games.

That process you described about school reports after a certain number of absences is not about the school caring about you or your daughter, its about them trying to get children in class so they get more money. They get paid from the federal govt based on attendance- butts in chairs. If they even begin to try to harass you after they are told about your daughter’s condition- get an attorney and sue them. Then maybe you could afford a personal teacher who can work around your schedule 🙂

I agree with you! the nueros work on their own schedules my nuero only takes appointments until 12 noon mon through friday, I have begged for a late appointment on friday so ,my ride, my husband dont have to miss a whole day of work. we usually have to be up by 5 am to get to the appointment. When we get there the doc says wow you had to leave early to get here because we travel 3 hours to get there. yes I said it would be great to get an late afternoon appointment so he could work till noon of course the subject is now changed and we dont bring it up again. see at my hubbys job if you work through 12 pm you get paid for all eight hours just a little perk.

I am sure that everyone could really use their vacation time for a vacation to relax with the family that time is very important. this is why I think we really need to get local organizations in our communitys that can help us all out. there are MS organizations that help people in many ways from driving them to dr appointments to giving them a vacation, handicapp ramps etc and even help them buy a home that will be compatable for all. I would like to be able to help everyone in need.

Kelly,

I’m sorry for making you feel that way and for misunderstanding a little bit of where you’re coming from.
I’m just being realistic here. CIDP/GBS is not asthma or eczema, its serious. We’d all like our lives to be what we perceive to be “normal” but at least part of the time that just isn’t possible right now.
I totally understand your frustration with condescending docs who are oblivious to you. I guess it comes down to what you value more, his or her specific abilities or your schedule/piece of mind.
I’d just find another doctor if possible since you dont seem thrilled with this one’s habits or manner.

IMO most doctors are pathetic hacks. I distrust them until they prove worthy of it. That has left me apologizing a few times but it also has prevented my being permanently harmed by idiots with degrees. Shop around. We pay them for their services, so if you don’t like them find another and file a complaint with your insurance company against them for whatever slight occurred. Would they sit still for the same ? I doubt it.

My main point was if your daughter is doing well with your current doc even though you have to make changes to your lifestyle you wouldnt normally accept, isn’t it worth it to you? I think we all have way more uncomfortable stories of how our lives have been changed, even devastated by CIDP. I apologize again if my response is too abrupt, I mean no ill will whatsoever, and if it was within my power to do so I’d make that doc give you afternoon appts or even cure your daughter.
I worry that one of these idiot doctors will not have me around long enough to watch my son go to kindergarten so my perspective is in a different place.
Have you searched anywhere for a new doctor?

Hi Kelly

You are new to the school system, so let me share my experience. What grawpyr is advising about the school’s ability and willingness to accomodate kids with medical issues is dead on. One of my kids had a period of serious illness in 7th grade (he’s in 9th grade now). As a result, he missed 6 weeks of school over one semester visiting drs, etc. We kept in touch with his teachers and the school’s administration, and assignments were routinely sent home. Throughout this stressful period in our lives, they were completely supportive, and the disruption didn’t affect his academic performance in the least. Or his standing among his classmates — kids can be quite kind and understanding. They even have a program where teachers will come to your home to provide academic support, or you can assume a home school approach, which is what we opted for.

I can relate for your desire for Emily to be completely “normal”, and you obviously understand that her health comes first. My experience after 14 years of parenting and 42 years of life is that “normal” is pretty subjective. It seems like everyone I know is dealing with something in thier lives that isn’t, in fact, normal. One of my kids has type 1 diabetes, so he’s routinely testing his blood sugars and shooting insulin. Not a normal activity, and yet he’s perfectly normal kid, if that makes sense. Well, actually, I think both of my kids are exceptional… 😉

You asked what do people do who work. Well, we take off when we are sick or we have dr appointments. Our health comes first. And we’re protected by federal laws. When I finally started telling the “big guys” at work about my CIDP/CMT, to the last they asked what accommodations would make my life easier, telecommuting regularly, devices, etc. I’m sure that thier inital reaction was probablly “oh no I need this employee at 100%”, but I never heard it, and I’m equally sure that they will be satisfied that my work responsibilities will still get done. Its going to be harder for me to perform at my old level because I am weaker and tire more easily, but thats just the way it is.

Wow, I’m a little long-winded today! My suggestion to you is to make an appoint with Emily’s teacher and the school principal and discuss your concerns with them. Thats what they are there for — they do work for you, as someone else mentioned.

Best wishes,
Helen

One more point I missed: doctors. I’m sure that there are doctors that are both brilliant and accessible, but I’m not sure where they are!! Hopefully Emily is almost done with tests, so the inaccessibility of her doc soon won’t be such a big deal. Do you have a pediatrician that can serve as an intermediator for you, who will have more time than her neuro to walk you through this? This is how we handed my son’s illness — our trusted pediatrician consulted with the multitude of specialists and translated for us. And we talked alot — hours and hours, lol. He’s become a good friend.