[blindkid] our introduction

Sun Oct 7 21:15:30 UTC 2012

Hello Tuesday

Welcome.

You sound so frustrated I really just want to hug you.  You sounds like a
wonderful mother.   I imagine the biggest issue needed to knowing your
child's official diagnosis is to know the prognosis and if there is a
treatment.  Sometimes the known can be a lot worse then knowing.

When we didn't know what was going on with my 6 year old daughter it was
very frustrating the first two vision professionals decided she must be
faking. The few weeks i spent questioning what my daughter could and
couldn't see breaks my heart now.

Maybe you should try a go to another pediatric ophthalmologist and get a
second option?  Not because you don't trust the other doctor but because
all doctors have a bit of a bias to what they have experienced in the past.
Doctors discount 'mommy gut' even though sometimes mommy's end up being
right in the end. I know I was.

My 8 daughter is blind with little to no central vision(but lots
of peripheral vision) so the reverse of what your son is experiencing.

You have come to a great place and there is lot of people here that want to
support you and your son.

I don't know if it would be any help to you but my daughter
was diagnosed two years ago and I wrote a letter to that crazy mom two
years ago in my last blog post.
http://visionfora.blogspot.com/2012/09/a-letter-to-myself-two-years-ago.html

-Penny

On Sun, Oct 7, 2012 at 3:11 PM, *2sday* <tuesday0728 at yahoo.com> wrote:

> Hello all ...
>
>    My name is Tuesday and I am from Cincinnati,
> Ohio. I am 30 years old and have four amazing children. Joey (7), Carson
> (5),
> Landon (4), Summer (2) These little people are my world! Our oldest Joey
> has
> always been hyper and struggled socially and in school. He was 4 when he
> started
> preschool and mostly just had behavior issues stemming from him being so
> hyper.
> Kindergarten was a major struggle, Joey was behind and we noticed that he
> couldn't see all that well. He failed his school eye exams so we went to
> the
> local eye Dr. which he passed. His vision was fine. It was in Kindergarten
> when
> we started his IEP for behavior and being so behind. Things that we would
> notice
> were Joey doing what seemed like adjusting his eyes. He would widen them
> and
> look to the side. His pupils were also VERY dilated! My mom would question
> this
> all the time. When we went to the regular eye Dr. we mentioned this but
> nothing
> ever came from it. Kindergarten and 1st grade he was seeing the same
> intervention specialist who was always keeping in contact with me because
> she
> just HAD to know what was going on with Joey. She had been working with
> kids
> with disabilities for 30 years and Joey just caught her attention.1st
> grade was
> challenging. Joey was so behind that he would just cause trouble in class
> and be
> sent to the principles office a lot. Up to this point we had tried several
> ADHD
> medications for his behavior and attention with not much success. We were
> also
> going through Cincinnati Childrens Hospital for some physiological
> testing. I
> had told the psychiatrist about Joeys vision and how we hadn't gotten many
> answers. She told me to call Childresns and set up and appointment with
> the ophthalmologist there. I did, & it took 7 months of waiting to get in.
> We saw her April 26th, 2012. She said right away that there was some
> issues with
> his retina. His central vision was good so there was nothing that
> prescription
> glasses would do but she wanted us to see a Retina specialist. We saw Dr.
> Sisk
> with the Cincinnati Eye Institute on May 1st 2012.
>
> This day ... I remember oh so well. After some
> testing we met with Dr. Sisk and this is when he told me that Joey was
> legally
> blind. The way that he said it "Joey will never be able to drive a car or
> fly a
> plane, this will limit a lot of things in life for him" As a mother I
> was devastated. I broke down. After getting myself back together to listen
> to
> the Dr. we were told that Joey possibly has one of two diseases. Leber's
> congenital amaurosis (LCA) or Retinitis pigmentosa. We did blood work and
> had samples sent to both Carver Labs and igene labs. Dr. Sisk wanted to do
> an ERG as soon as possible but their machine was broken and we had to wait
> until the new one came in. waiting for that felt like forever! When we did
> finally go in to do the ERG it wasn't working properly so it felt like we
> had Joey put under for no reason. We did get to talk to the Dr. a little
> better that day and he was very certain that what Joey was dealing with was
> LCA. He had never told us that he was leaning more towards LCA so this was
> news to us. so now, we were just waiting for test results to come back.
>
> Watching Joey we did notice more loss of peripheral vision. Over the
> summer it seemed to get worse. He started tripping over things and holding
> on to me whenever he walked. He did fall a few times and you could tell
> that we was scared. Last week we received a call from the Dr. that the
> testing from Carver lab came back. Out of the 14 genes that were tested for
> LCA they were all negative. ?? My initial thought was "WHAT?! you were so
> sure!! you told us it was...." both his father and I were confused. If it's
> not LCA then RP? is it RP? so here we are, back at square one. In the dark
> and no closer to knowing what it is that Joey has. Dr. Sisk recommended
> that if we could afford it to go through with the phase 2 testing so we
> could see if it is LCA. He said we need to trust him with this. He still
> thinks it's LCA. I asked him why he wasn't leaning more towards RP and he
> said RP is normally in older people. Everything I've read on RP though
> sounds like
>  Joey.
>
> Joey also had his first seizure in June and another in September. We have
> had an MRI and EEG which both came back normal. Joey's behavior has been so
> bad that no one wants to be around him. We have started with a therapist
> and are scheduled to see the psychiatrist in November. He has ADHD, ODD,
> ADD, and is Bi-polar. Atleast that is what they say...
>
> What scares his father and I is, what if it's not LCA or RP and it's
> something else that also includes his behavior and seizures? We had
> discussed Battens disease with Dr. Sisk in the beginning and again when he
> heard of joey's seizures but with a normal MRI and EEG it's not likely. I
> am a member of the LCA boards on yahoo and they had reffered me to this
> group. I'm just at a loss as to what to do for my child. I feel helpless.
>
> Thank you for listening to my long story :)
>
> Tuesday
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-- 
-- 
--Penny
----------
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