I really need to remember that I set this blog up and get back into the habit of blogging.

Just when you think everything is good and you have all of your major issues solved, life throws you a curve ball.  We found out why my husband was still sick despite being on meds for everything wrong with him (severe vitamin B12 and D deficiencies) and we discovered that a number of the kids have vitamin D deficiencies and it’s something genetic causing their bodies not to process it right.  We are in the middle of testing our youngest for ADHD and he just had his sleep study and we found out he has low thyroid levels.  In the process of getting him an appointment with an endocrinologist for that.  It’s a huge pain in the ass.  Now we have another problem.

My 16 year old daughter, Savannah, has lost the use of her legs and is in a wheelchair.

Sunday we were getting carpets cleaned and she was cleaning around her desk when she started having problems breathing and her hands cramped up into fists and she couldn’t straighten them.  Next thing we knew she couldn’t walk.  Well, she could but it was horribly uncoordinated and dangerous for her to do so.  One trip to the ER later reveled…nothing.  Urinalysis was clean, blood work was clean, EKG was normal and nothing showed up on her CT scan.  We were left with a very frustrated doctor and put him in contact with our neurologist.  Our neurologist told him to discharge her with directions if she got worse we were to go to another hospital and she would be admitted there.  We were also told to show up in her office the next day.

At the doctors office on Monday orders were written for a MRI (head, neck and spine) and EEG.  The EEG was scheduled for Wednesday.  When we got in the car I started calling places to get her MRI done only to find out we needed a pre-authorization.  I called the neuro’s office and got the receptionist/office manager.  This woman makes me mental.  She has always made me mental.  This woman is the reason that the pharmacy has to send over FIVE requests for a rx refill before it’s done.  We let her know that we need the pre-authorization.  She tells me that it isn’t going to get done that day.  Okay…

Tuesday morning I have my husband call them back and check on the pre-authorization.  He gets the nurse that has to do that and she tells him she never got the message.  Sigh.  I also call and make her an appointment with our GP for Wednesday after the EEG.  Two of her siblings (they are 12 and 13) keep telling her she needs to get in her pokeball where they can take her to Nurse Joy to get healed.  At least it made her laugh.

Wednesday when we go in for the EEG the nurse is still working on the pre-certification.  Problem #1: the insurance can’t find her in the system because they have her birthday wrong.  Problem #2: after they find her they decide that they will only cover the MRI if it’s downgraded to without contrast.  Doesn’t matter that the doctor is checking for MS, they want to try and save $3000 by denying a procedure her doctor needs to find out what is wrong with her.  You can’t look for MS without contrast.  I even know that.  They do tell us if something shows up on the MRI they will cover the cost of a second one with contrast.  Seriously?   The MRI that the insurance says we can have gets scheduled for today.  We are also given a slip for blood work.

Dr. Sammi was in the office we had the EEG scheduled at.  This guy reminds me of a senile Dr. Brown from Back to the Future.  He even looks the part.  The one time I seen him I wasn’t impressed however I think that part of the issue was he didn’t know my medical history.  Still, he didn’t really listen to me.  I do know that there are people who go to the practice that really like him.  Anyway, when he seen Savannah walk (and she needs help) he asked the tech there if she had Cerebral Palsy.  That is what it looks like when she walks.

Leave one doctors office and go to another.  Dr. G is given all the tests from the hospital and the neuro’s report.  Choreiform movement throughout her body, dystonia and ataxic gait.  He looks at the blood work from the ER and says in Dr. House fashion, “This is interesting, her biliruben is low”.   He pointed it out on the blood work, not only is it low, it’s non-existent low.  Biliruben is that stuff they worry about with newborn babies that causes them to look yellow for a bit.  It’s a normal by-product of hemoglobin degeneration as the red blood cells die and make new ones.  It’s normally removed by the liver.  The doctor said something to the effect that it could mean that her liver isn’t processing it properly.  He told us he wants an ultrasound done of her abdomen, pelvis and kidneys (it’s scheduled for next Tuesday).  He also drew the blood work that the neuro wanted done and adds about 30 more tests to it.  They ended up taking out seven vials of blood.  I was also given a cup for her to provide a stool sample (that sent her into OCD fits).  He also gave us a slip where our insurance would cover a wheelchair.

Getting the wheelchair proved to be challenging.  I ended up calling every place listed in our insurance provider directory that carries durable medical supplies in the DC Metro area.  Surprisingly out of all those numbers only one wasn’t working and one was a wrong number.  Our insurance company is very bad about keeping the provider directory updated.  I found ONE place out of about 30 or so that had a wheelchair in stock.  Apparently every wants motorized scooters and wheelchairs so that is what everyone carries.   We have to drive into Springfield, 3o mins away without traffic, to get it.  We get up there and we have to wait an hour for them to put her name, address and insurance information in the computer (yes, it really took them that long and it’s not that much information – it takes CVS less than 5 mins to do that stuff with a new script) and bring out the wheelchair.  As much of a pain in the ass as it was, at least she has it and is happy not to have to ask everyone to help her get from point A to point B.  She got the hang of using it pretty quickly and gets around well.

We got up butt-ugly early to go into Arlington to get her MRI done.  We were sent home with disks for both the doctors if they wanted to see the films.

Now we are just waiting to get the ultrasound done and for test results.  I really hate not knowing what is wrong.  I am well beyond the grieving for “normal” children and feeling sorry for myself and the depression that a lot of parents go through when they find out something congenial wrong with one of their kids.  We have been dealt autism, celiac disease, sleep apnea, asthma, central auditory processing disorder and life threatening food allergies.  In some way this seems like a natural progression that was bound to happen.  We have already adapted to life with a wheelchair.  Savannah had the top bunk and we switched beds around last night where she didn’t have to keep sleeping on the futon and we can get the thing in and out of the car quickly, like we have been doing it all our lives.

I really hope that the doctors figure out what this is and that it’s only temporary but I am preparing myself for the worst that way there are no surprises.

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