New Neurologist

You know I LOVE our neurologist Dr. Tuxhorn. But she's leaving Cleveland Clinic! Boo Hooo!

But word is she's going to be the new head of pediatric epilepsy at Rainbow Babies Children's hospital. Which is on Euclid Ave. in Cleveland just like Cleveland Clinic!

When I first found out she was leaving I was just really hoping she'd stay in the U.S. and not go back to Europe. So to think she's just going down the road is great news.

I still don't know if she'll take patients at her new position. Rainbow Babies is part of University Hospital, which I think is part of Case Western University. BEAUTIFUL campus by the way!

Naomi has a routine EEG on Tuesday then sees Dr. Tuxhorn later in the day, so we'll no more then.

I really hope we can just move with her! We've seen her since November 2007 and I really don't want to switch. Just in case I've already decided we will see Dr. Deepak Lachhwani if we HAVE to stay at Cleveland. He did rounds once when she stayed in patient at the pediatric monitoring unit and had a very nice bedside manner. So I'd be comfortable with him. But still really hate to think of loosing Tuxhorn.

To the Clinic

We went to Cleveland's Cole Eye Institute today to have Naomi's eye's looked at. Last time we went it was because she was acting like she couldn't focus. That ended up being Depakote. Once we weaned her off the Depakote that behavior stopped.
But when she was on absolutely no medication she was flinching. She would close her eyes and turn her head quickly like something was flying at her. So I figured, lets rule out vision!
Two years ago when she had her last eye exam she was supposed to see Dr. Traboulsi but he was called out of the country for some reason. She was seen by a resident and another Dr. came in and double checked and she was fine then too.
So today was our first visit with Dr. Elias Traboulsi . In true Cleveland Clinic fashion, he was wonderful! Again we were first seen by another Dr. and he thought every thing was fine but Traboulsi came in and wanted to double check.

I'm so used to holding Naomi down. I held her in my lap and when he was trying to look in her eyes she was screaming. I held her chin and at the same time reached up and pulled down her eye lid with my thumb, with out him asking me to do so. He moved to the other eye and I did the same. He stood up looked at me and said "you're hired!". That made me and Bill laugh.

After he told us everything was indeed fine he asked me if they'd found an underlying reason for her seizures. Was it mitochondrial? I said no we'd had testing done. He asked me if something had been done and I said I wasn't sure but she see's Dr. Parikh and he has ran all the metabolic and mitochondrial test. He said the test he wondered about would be called a metabolic panel. I remembered that one, and assured him it had been done. He said he's a geneticist. I love how their Dr's double check everything.

Who thinks they'll go to the eye Dr. and get a suggestion about neurology?

He said the flinching could be part of her seizures. I definitely think it's something neurological or maybe a better way to say it is it's part of the sensory issues she has.
I think it's interesting when she was taking no drugs she was doing this. At the same time she was seeming to be picking up more things. Then we started the Zonegran and lots of things seemed to slow. So maybe it slowed something in this too? Who knows. It's all a mystery!

I do know that other times when she's come off of meds I have seen her look at things she views every day like she has never seen them before in her life!
I'm ready to stop the Zonegran, her seizures are predictable right now. But there's a few things about the meds I hate. One just being getting her to swallow them! It's a fight!

Well that was my day. Hope everyone else did something other than go to the eye Dr.

Good News

We seem to have some good news from the oncology doctor at Cleveland Clinic.
My dad has to take hormone shots every three months.

The cancer is in his bone and lymphnodes in his stomach (?), but the hormones will slow or stop the growth of the cancer. The doctor drew an illustration to show my parents that the hormones block the brain from sending messages to what ever produces what we don't want produced.

Also he is eligible for a clinical trial at the clinic. They've always done the hormone treatment then if that doesn't work they do chemo. The doctor said the thought now is going towards, why wait until you're sick. So if he takes part in the trial he will not only take the hormone shot but will take 2 hours of chemo, one day a month for six months! My Dad said he was just doing the shots at firsts, then I got on the phone and said "Dad this is a no brainer! Why wait!? Go after it now!" So he said Ok, he will go ahead with the trial. They won't even have to pay for it! The doctor said all they'll pay is their $25 copay. So all in all it will cost them $150 over the 6 months! Like I said No Brainer!

I'm so happy they went for a 2nd opinion at Cleveland! Those doctors are wonderful up there! Dad said he sat and explained thoroughly everything and answered all their questions. The doctor even told him if he decided he didn't want to do chemo any longer he could stop at anytime. They wouldn't use him as a guinea pig.

Dad's PSA was low. That is a protein produced by the cells of the prostrate gland. They take a blood sample and measure the PSA and they can mark the disease by the levels rising, or something to that effect. There is no "normal" PSA, but generally when it rises above 4 they do a biopsy to check for cancer. Well Dad's was only 2 something. Apparently Dad's body doesn't produce the protein. So it would never have been detected that way.

Also, not about my Dad, but about the clinic. Last week a local news was doing a story about the proposed universal health care. They interviewed one of the heart specialist at the Cleveland Clinic. He said if they can come up with a good plan he's all for universal coverage and we should be ashamed that there are 76 million in this country with no coverage. But then they were talking about why Cleveland has such good care and relatively low cost. Here's why, and I don't know why every hospital couldn't adopt this!! Cleveland Clinic doctors work on salary. The heart Dr. said whether he does surgery or angioplasty he makes the same amount of money. Plus Cleveland has all it's specialist under one roof so there is better communication and a group effort in treatment. There is very much a focus on wellness also. This made so much sense to me! It also made me feel like our Dr. wouldn't order unnecessary tests just because his house payment is due (know what I mean!?).

Well, I'm happy, so very happy and thankful! If not for Akron Children's making me so mad when I went there for Naomi I wouldn't have taken her to Cleveland. If not for the excellent care we've gotten there I may not have insisted my Dad go there for a second opinion. If I hadn't he'd be going through radiation right now that would be doing NOTHING for him!

Everything happens for a reason!

Visiting the Clinic

I've been to Cleveland Clinic quite a few times now over the last nearly 2 years. My parents went up for tests and had time to kill and a volunteer asked "Have you visited the rooftop?". I've never been to the roof top!!!! I want to go now! You can bet I'll be visiting it my next trip there! Mom and Dad said it was lovely. There were indoor and outdoor observation sites and you could look right down Euclid Ave. to downtown Cleveland, which is over 2 miles away. They said you also could see out to Lake Erie. We have to go back in August I'm hoping to be able to take Isaiah and we can visit the roof.
Last week was the first time my parents had been to the clinic and so I went to show them how to get where they were going. It is a little overwhelming at first. Then you get the hang of it and it's easy peasy to get around.
My mom said "how much ground do you think this place covers?" Well, she asked a volunteer that on their most recent visit.-- 140 acres! --We were way off! I knew it was big but my goodness!!!!!! 4 doctors started the clinic after WWI and wanted to serve humanity and never turn anyone away. It's just amazing the talented doctors they've attracted. Everyone is so nice there!
If a family member has any problems I couldn't even begin to tell you how much I would recommend them!
It's always nice to leave a doctor appointment and even though you're not cured you feel hope and know you're in great hands.