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.
Well today was another procedure day for Ariel.She had another Endoscopy one of many she's had.We went in the procedure room where they covered her with hot packs trying to plump up her veins and waited.
She is such a champ barely even flinches when they poke her.Thankfully it only took once to get the i.v. in her.We had wonderful ,kind, caring nurses today.They even gave Ariel a stuffed alligator.They took her back I stayed until she was out.She put up a bit of a fight,but then zonked out pretty quickly.
She was only in for 15 minutes when they brought her out.She was sleeping pretty deep,because she was alarming pretty good.The doctor said her stomach was pretty red and inflamed.They did Eosinophil tests,tests for H-Pylori,Celiac and several other things.The doctor said she thought she might have h-pylori or it could just be all the meds irritating her tummy.
She's now home feeling a little icky laying in bed resting.Hopefully she'll be feeling better later on.
Just when I think we have things semi settled down with Ariel then Daniel's starts up.Saturday night he was in the bathroom when we hear the all too familiar moan.We had a hard time getting the door open because he crashed behind it.When we did get it open he was laying in a pool of blood.Mainly coming from his nose.
We ended up calling paramedics that took forever to get here.But they finally did and we managed to get them into the bathroom.He was very tachycardic with low 02 sats and non-responsive when they got here.He started perking up little by little in the ambulance.We finally arrived at the E.R.
Sorry for the blurry pics my phone doesn't take the greatest ones at night.Once we got into the room and I saw the name of the physician on the board Dr.S,I knew it was not going to be a good night.We have had this guy before.He is not a nice person.He always has this look about him like he just smelled cabbage cooking or something.You know how they say body language is like 80% of communication,well this guys demeanor and body language just exudes arrogance and a God like attitude.
He comes in and says "What's the problem why are you here." the parmedic preceded to tell him what was going on.He knew who Daniel was.About a year ago we went in there for a dislocation Daniel had.We told him the way to put his arm back in.He refused to listen,because of the God like attitude.He spent over 40 minutes yanking on my son's arm unnecessarily.We were furious and then the guy totally flipped out started wringing his hands and running them through his hair in a very unstable type manner.We ended up having to go to a whole other hospital and he had to be taken to the O.R. to put it back in.
I also saw him recently when I took Ariel up there for that severe kidney stones pain.Thankfully a very kind lady doctor came in first,but then he walked in gave me the same line Ariel was doubled over and crying hysterically and he's asking her all these questions I started answering and he was very snappy with me I finally raised my voice and said"look she's in too much pain to answer your questions and she's impaired." He then looked at the chart and saw the other doctor had been in so he left.There is no reason for medical people to be rude,condescending and cruel.If it wasn't for us they wouldn't have a job.
Poor Daniel was looking so bad.His face was all swollen,especially his nose.His shoulder was dislocated and he just felt terrible.They asked him his pain level he said 7 and yet they gave him nothing for pain.They started an i.v. they did nothing with, didn't even give him fluids despite Daniel telling them he felt dehydrated and was getting a headache.
The nurse he had was rude and not helpful in the least.Finally after getting a ct scan and x-ray showing of course his dislocation the doctor wanted to ship him to St.Joes.We told him look give him something for pain to relax him and he probably can pop it in himself.Every other physician there would have given him something for pain ages ago.
So he finally does and Daniel gets it back in partially.He had to do it a couple of times,but finally it was back in.Three x-rays later and we were ready to leave.The doctor wants to send him home him with nothing for pain at all.It was ridiculous.They act like everyone is a drug seeker.It's disgusting.He finally gave Daniel 6 whole pain pills.My goodness.If he would have treated Ariel he probably would have given her Tylenol for kidney stones.
I hate to come off sounding bitter and like a complainer,but my kids suffer through enough and when we finally have to break down and get medical help the least they could do is show some kindness and compassion.I'm going to call the Orthopedic Surgeon today and get an appointment going and get a set protocol for the E.R. I'm sick of this kind of stuff and am just not going to put up with it anymore.
Thankfully Daniel is doing a bit better.His eyes aren't as black as I thought they might be.He's pretty sore and we've been giving him a bunch of Gatoraid,since the nurse was not with it enough to inform the doctor of our desire for i.v. fluids.Another thing any other doctor would have given him instantly.I'm sorry I am upset.I've been dealing with so much medical stuff,especially since January and I just get tired of seeing my kids get treated so badly,especially since their conditions are through no fault of their own.Thank you everyone for your prayers and support.
Here is my other blog post:http://marrerofamilymakingthemostoflife.blogspot.com/2011/11/doctor-headaches-and-hassels.html
