Archives for April 2009

At the suggestion of Hannah’s developmental therapist, I called and got Hannah signed up for 3 Texas-based support programs.  The waiting list is incredibly long for these programs, but at least Hannah will be in the system. 

* CLASS (Community Living Assistance and Support Services):  Provides home and community-based services to adults and children with related conditions as a cost-effective alternative to ICF-MR/RC institutional placement. People with related conditions have a qualifying disability, other than mental retardation, which originated before age 22, that affects their ability to function in daily life.  Hannah’s place in the waitlist – #25,849 (approximately 12 years!)

* MDCP (Medically Dependent Children’s Program):  Provides services to support families caring for children and young adults who are medically dependent and to encourage de-institutionalization of children in nursing facilities.   Hannah’s place in the waitlist – #12×799 (approximately 9 years!)

* HCS (Home and Community Services):  Similar to MDCP, but more community based. 

The good thing about these programs now is that she will be in their system.  There will be other services that she will be or may be eligible for  that we could obtain much sooner (months rather than years) that would be very helpful, but we need to get “into the system” first!

We had Hannah’s NeuroOpthalmology appointment yesterday.  The appointment was at 11:45 am downtown.  Daddy showed up from work to wait with us because he wanted to hear what the doctor had to say.  At 12:45 pm, he had to go back to work.  We didn’t initially get to see the doctor until 1:30 pm!  I was getting so pissed.  Then, we saw her for about 3 minutes, and she had her nurse dilate Hannah’s eyes.  So, we had to wait ANOTHER 30 minutes, and we then saw the neuroopthalmologist for for another 5 minutes!  I felt like we were there all day! 

We didn’t learn anything new, but it was a good idea to get set up with a neuroopthalmologist on Hannah’s team beause we know how seriously the eyes can be affected by her disease.  She basically confirmed everything that Dr. Schiffmann, Hannah’s neurologist and GD expert, had diagnosed her with 3 months ago. 

Supranuclear gaze palsy and lack of saccadic eye movements, which she called by a new term.  But she did call it a new term.  Ocular Motor Apraxia.   I found this information on a Scottish medical site which helps explain it.  I posted bits of the article below.

Medical Information on Ocular Motor Apraxia
What we see is made in the brain from signals given to it by the eyes.
What we see is in fact made in the brain. The brain makes sight from signals given to it by the eyes.

What is Ocular Motor Apraxia?
‘Fast’ eye movements are called saccades. We use saccade eye movements to quickly change the direction that our eyes are looking. This helps us look at something that has suddenly moved near to us. This is so the eyes can focus sharply on an object. The eyes can then give clear signals to the brain to make clear vision. It also helps us quickly move our eyes across a page of writing while reading. Saccades are important in many other visual tasks. Ocular Motor Apraxia is a condition where a child has a breakdown (failure) in starting (initiating) fast eye movements.

How is Ocular Motor Apraxia diagnosed and how does it affect the way a child sees?
Ocular Motor Apraxia is often diagnosed by doctors asking parents questions about their child. Children often ‘thrust’ their head from side to side to change the direction they are looking. ‘Head Thrusts’ are a typical movement that helps a child overcome their difficulty in moving their eyes quickly. Children may also blink to start a fast eye movement. Parents will notice this. These children often tend to have difficulty reading. They may also dislike travelling in cars, as they will have difficulty seeing things passing by outside of the car.

During an examination of the child’s eye movements an eye doctor can confirm the diagnosis. Sometimes other tests are also done. This may be to see if there is a cause for the condition. Often no cause is found. This is called idiopathic.

Does ocular motor apraxia get better?
The lack of eye movement in ocular motor apraxia is first seen during the first few weeks of life. The movements of the head develop later. During this early stage the baby may wrongly be thought to have poor vision because moving targets can’t be followed by the eyes. Quick side to side head movements called head thrusts may then develop. Long term follow up has shown that these head movements decrease gradually over a number of years in many children.

How can parents, family, friends and teachers make a difference?
Ocular motor apraxia may develop on its own. It is however more commonly seen along with other conditions. These conditions might cause slowing of some aspects of development. As far as vision is concerned there are a number of things to think about.

We use our vision to get around, learn new things and to meet other people and make friends. Most children with Ocular Motor Apraxia have few problems getting around. The way they act can give the impression that their vision is normal. It is important however to be aware of their own special problems with vision.

It can be difficult for the child to choose to look in a particular direction. This means that the child may not look at you. This does not mean that the child is not paying attention.

The child may find it difficult to follow moving objects, especially when they are small. Television programmes with fast movement, such as cartoons, may not be seen easily, and the child may choose to watch programmes in which there is less movement, like panel games. Children with ocular motor apraxia may choose to get close to the television. This does not cause any harm.

Some things, which are moving quickly, may not be spotted because the ability to locate and follow moving targets is reduced. It is important to teach how to cross roads safely. Ball sports can also be difficult. When a child is old enough it is worth practicing throwing and catching.

A child who chooses to use head thrusts should not be made to stop doing this. They are trying to improve their vision and are often doing it without knowing it.

Difficulties at school may be due to some of the reading books being hard to see. This often means it takes longer and more effort to do the work. If the size of print is increased most children find schoolwork easier. They may also benefit from using a computer software programme while reading. The programme only shows one word of a sentence at a time. It is in the middle of the computer screen. This reduces the need for fast saccadic eye movements. It can increase reading speed and reduce tiredness.

I started going through all my emails from the past couple of days, and I came across one from another mom which had some great ideas on it.  These are some great community-based charity fundraising suggestions.  She gave me permission to share it with all of you. 

Some of these look like a lot of fun, and I can see them being done here!  (We had put our big fall fundraiser on hold, but this could kickstart it!).  If you have any more ideas to share, please add them here, and I’ll add them to the list!

* community walk
* golf tournament or minature golf tournament
* carnival/faire with local companies who want to promote to families
* special “night” with local high school sports event,
* “game show” night which is like a theatre performance with locals as participants with prizes
* Local teams or running groups to take on child as other non-illness related events (ex:  “we are running for child’s-name at URL.com”)
* Local school calendar/neighborhood calendar (candids are good) to sell
* comedy night with local comedians
* concert with local musicians
* Community book sale/flea market with all proceeds going to child (can be online as well)
* Talk to local corporations about taking on child as their “inhouse” charity for the period
* Parent/child community dance/evening at local rec center
* Child Art Show with luncheon
* Sports tournament with local children/families
* Community-wide scavenger hunt with local businesses to donate to draw customers in plus participants pay an entry fee
 
* silent auction/raffle with any of these
* Tshirt sales with any of these
* Bracelet sales with any of these
* Food sales with many of these
 
* Talk to local school booster clubs for ideas
* Talk to local churches for ideas