Wednesday, March 14, 2012

Figuring out when you need a new set of eyes to look at things.

We've been at this road many times in the past.I always hate it when I'm facing this.Ariel has been my most non-textbook child.

It took us many years to get a proper diagnosis for her.For years I begged and pleaded with doctors to figure out what in the world was wrong with my daughter.How my perfectly healthy normal daughter went from being able to do pretty much all things that a 6 year old could do,to being a child at 9 years old that no longer understood things and didn't even know what shapes were.

She also started having a lot of other medical issues that were odd.Like Osteomyelitis and Tenosynovitis.Anyway it took us many years and many specialists to finally get some proper treatment for her.

Even after Ariel had a horrible Status Epilepticus event in June of 2009 and had 15 convulsive seizures back to back and ended up with a nurse by her bedside for a week in PICU.I finally had gotten to the place of thinking now they will see that there is really something major going on with her.

Then when her Neurologist signed her Make A Wish papers.I thought for sure they will take things seriously,boy was I ever wrong.Shortly after our Make A Wish trip I reluctently allowed them to send my daughter to Children's Hospital for a week of testing.I have never had good care there.Not in the Epilepsy unit anyway.They may be great as far as other services,but Epilepsy no.

Well the Neuro there saw a video of my daughter in a Dyskenesia episode.Ariel gets horrible Dyskenesia from certain meds.Dyskenesia is a movement disorder that normally does not effect your mind,well in Ariel's case it does effect her mind and makes her go into seizures, it's awful.Thankfully after 2 horrible incidents with it,it is well documented.

Well this particular doctor saw the video and labeled Ariel as having Pseudo seizures or psychological ones.I was furious.Every EEG she has ever had has been abnormal except for twice when they did one after giving her 4-8  I.V. loads of medications to calm her brain down and then when it does they say she's faking it.

Her Neuro started treating her funny after that.He ordered a spinal tap,guess what? It was abnormal she had elevated pressure and protein.Then he said run and do all these tests for all sorts of horrible fatal diseases and disorders,when those came back normal he again started treating her funny.

Even though he had been her doctor for many,many years.I finally realized he could no longer treat her objectively.He had been tainted by that Seattle doctor. We left him and went to his partner,well when she started seeing Ariel the first thing she mentioned was the Pseudo seizures.He had made sure to put in his report to her.I was so angry and told her she does not have Pseudo seizures.She said well lets do an EEG for a week.I agreed and guess what? After a week she pretty much said her brain was firing constantly.Then she had second Dyskenesia episode at the E.R. when we were there for an ovarian cyst that was causing her much pain.

They gave her Morphine and Zofran and her eyes immediately rolled back in her head,she started making this weird grunting sound and then started doing all these flailing movements.It was horrible.Then she started seizing.She had to be transported to another hospital by ambulance.In a way though it was a blessing,because it finally put to bed the whole Pseudo seizure garbage.

After that she has been an absolutely wonderful Epileptologist and Ariel's staunchest supporter.Once we ended up going to Harborview in Seattle, one of the top notch Epilepsy centers in the country,and they said her brain was firing constantly, and that they believe she has a devastating Epileptic syndrome, and they pushed for her to have the VNS placed Ariel started getting better treatment.

Now that she is having the situation with kidney stones and keeps getting this chronic bone and joint pain and having other issues I'm feeling like she needs to see a Rheumatologist or another specialist.She has a couple doctors that lately I'm feeling are not addressing the concerns we have.I hate that it often gets to the point of Ariel having to be in dire circumstances for people to listen.

We also have the added stress of her being physically 18,although not mentally.Our children's clinic that we love will not treat them after 18.It's so hard to start over and forge new relationships.The Epileptologist that I really wanted to take her to,our insurance won't cover.That was so disappointing.Hopefully we can find some wonderful new specialists to take care of Ariel's needs.I appreciate the prayers over this situation.


  1. So many decisions and you have got to be so worn out Linn! I will say prayers especially for you tonight. Switching docs, starting fresh, is so daunting, you want to scream, just "training" the docs, you should draw a salary!!! Prayers always for the family! Hugs big time!

  2. Praying that the Lord will show you the direction to go.