IEP results today

Today was the IEP review with Colin's Psychiatrist.  She is in the process of setting up another full clinic once again to gauge more activities and help for her clients.  We all feel very comfortable with her care and will continue on seeing her in conjunction with the Neuro Psychiatrist that I was able to not only get the insurance to approve with the help of the Psychiatrist but also the one we could get normally doesn't accept our insurance at all but he approved this one due to Colin's rare CDD possibility.  Such a huge relief after fighting the Pediatricians office yet mostly the insurance declining it for the past 2 weeks over as they "didn't see it necessary" for his care.  I've had enough of the Dr's saying no to me, and no will not be part of their vocabulary when it comes to something so important!

Moving on, the diagnosis is pretty much as discussed with her over the phone.  As mentioned she says he is within the Aspergers criteria thus diagnosing him with that.  I can't recall what the name of the 'scales' of 'criteria' from the questionnaire was. However, he did rate 139/150 [75 being the entry for the Aspergers criteria requirement which shows how high on that he lists] for one and 24/30 with 12 being the minimum requirement for diagnosis [?12? I think..].  She believes he might just have mild Aspergers and wants to observe him in a school setting to see how he social response and academically responds to the environment.  If it doesn't, or further regresses that would indeed start to show that he just has the average but very high functioning healthy socialization with his Aspergers or he might have CDD as things could further socially decay.  He has a diagnosis now, however, he is due to have a change in his Diagnosis within time.  As they say, only time will tell.  It's so hard waiting it out and at this time I find myself just enjoying those small things that used to occasionally bother me and even the repetitive discussions he rambles forever about just to carpe diem as who knows what the future might hold.  Enjoy it now, as no one is guaranteed tomorrow or to be guaranteed it to be the same as their yesterday. 

He also has Sensory Processing Disorder which obviously our next step we've been putting off is Occupational therapy and Physical Therapy.  We've completed most major diagnosis so now we're working towards the daily maintenance within our schedule since our schedule is less intense with appointments as it's been.  I would love one week with out 1-2 appointments or the need to speak with a medical professional.  My phone is always off the hook now!  Even while I was in NYC I was reciving inbound phone calls from school about my son Logan sticking his tongue at the bus driver to insurance declined the Neuro Psychiatrist.  My job is never done. 

She further discussed that he is looking to have signs of not only anxiety due to his Aspergers, vision problems, and Sensory Processing Disorder..but also he's showing signs of parent attachment disorder.  The Psychiatrist acknowledged my healthy attachment with Colin [well, cosleeping, long term breastfeeding, and attachment parenting has been a huge involvement with Colin in every aspect since birth, and taking time off from not working has been a blessing towards giving my son this deep base to life. Because of this, he responds to touch well as soothing which is rare to have within Aspergers children or even adults.  Thank God for all that time to 'attach' with my child!  I will have plenty of time to return back to working once this important basis in my kids lives is established. College or now!].  She as briefed on the situation between Mike and his parents and how they're towards me.  She is going to see both Colin and Mike to work upon attachment parenting and reconnecting and hard-wiring those connections of parent to child before further damage or the same path laid before Mike continues on between Mike and the boys. 

Fathers relationships between children is so important.  It's even more important for a father to be a positive mature example to their kids and know the detailed in's and out's of how to approach their kids in many aspects.  What more of a challenge than a special needs child with Aspergers plus all the rest going on with him?  Our family needs any healthy aspects as possible, not destructive or history to repeat itself again. Attachment Parenting Disorder If you think your family might have a problem with this as well, it's important to seek help and have your child be reassured.  The Psychiatrist even informed me that no matter how deep of a bond or attachment I have with my child, it won't make up for the detached other parent half.  Mike is open about this and excited to get started in reconnecting with his son.  He has been slaving away at college to score many 4.0's or make income that his relationships with his kids have slipped.  The more outside lack of support the further his presence with them has decayed.  I'm happy to see this possibility for that to be restored after all we've all been through.  If you think your family has something like this, get it checked out the sooner the better.  Healthy connected attachment parenting is so rewarding and will end with positively confident children not insecure false confident children. 

On other news, I have a 4 chapter midterm test on Monday along with 6 other pages of homework that I'm 4 pages into at this time.  I need to cram more information back into my brain and hope it sticks until I take my test on Monday!  I'm returning back to work on my Business Degree that I took a break off.  The last time I attempted to return to college was the same day I found out that I had placenta previa with Colin.  I was about 13 weeks along in his pregnancy, just laid off of work a few weeks prior to becoming pregnant with him, sitting down to discuss with a college advisor about transfers from previous college I've been attending and the degree of choice to attend classes.  I was receiving unemployment so my attempt was to score the free college tuition while on Unemployment.  That option fell through once I left the advising appointment I had bleeding for the evening and off/on for the next week that placed me on bed rest for about a month.  It was scary, but things turned out safely as my placenta 'migrated' out of the danger zone and bleeding stopping.  It was traumatic enough that I've took that time off from returning back into college. 

Once I had him I knew it wasn't time to return back to work yet as there was something 'special' about his learning abilities as he'd suck information in super quickly.  For example, by the time he was 16 months he'd say large words like umbrella and be able to tell you and point out what is upper case or lower case A-Z letters as well as sounds! Now with college, it's very refreshing to be back to work towards the ultimate life changing..and challenging goal!  This time with no pregnancies, but just kids medical problems to juggle now.  I just hope to find, afford, and juggle colin attending Pre-k now prior to Kindergarten to determine how everything will work out for him in Kindergarten.  

I'm off to study now.  Everyone have a wonderful evening and adventure filled Halloween week!  I know we will here.  We just visited our local pumpkin patch today.     





   

ERG test results are in, a week later!

ERG RESULTS ARE finally IN!
This evening I finally received a long waited for results to ERG results. It has been a rather impatient week regarding the lack of results from the tests last week.

Colin at his recent dental exam.  He was totally relaxed with his Hiro & Thomas in hand for the appt!



Daily I've been reaching out to them as I get transferred around on average to 2-4 people who each tell me something different.  Only to reach some one who finally says they're not qualified to offer the results of the ERG study and not even a tech [who normally offers us the info] can not offer us the info.  To me, this has been a red flag all week.  Call it a mothers intuition, if you will, but something is going on with these results as a simple "everything is okay" I'm sure would be answered by a technician as it has been leading up to this point.  But patiently just tried to take day by day and medicate upon patience and within time the answer would come sooner or later.

That day was today. 
I've had other appointments for myself, other kids appointments calling in as a constant tease leading up to it.  Thinking..is this the call?! Nope, another appointment confirmation.  Or a rescheduling another kids appointment. So on and so forth.

Today was different.
It was near the evening and finally his Neuro Ophthalmologist contacted me directly with an apology for the delays but she just wanted to get a definitive answer from the Eye Geneticist and technician that handles the ERG results.  She is such an amazingly sweet articulate and intuitive woman.  Really, the medical industry needs more people like her.  As mentioned in previous blogs, if it wasn't for her we wouldn't of already had a clinical diagnosis of Stickler Syndrome perhaps for years with Colin before it was too late and things were worse off than it could of been otherwise.  She is such a blessing!

DISCUSS.
She proceeded to discuss the final results from the Retina scan.  He appears to have a deficiency in both Cones and Rods within his Retina.  What does this mean? These are the cells that make up the Retina.  In his case, his 'cell's are stretching because of the lack of normal cells that should be there instead. But not having enough, it's been creating a light sensivity problem during day light where he literally can not see a thing.

Imagine when you set your camera incorrectly with the ISO and all the settings are off to allow as much light to come in like you would for night. Instead of that he has that bright saturated image constantly that doesn't allow him to see during the bright sunlight-at all. This is why he does better in darker environments. It's not just a cone, but also a rod which means no matter which direction you go this standing in the way can create a barrier from him having perfect 20/20 corrected vision.

The good news, however, is that there was no signs of potential tears in the retina or holes that might suggest he was getting close to having his Retina detach.  Retina detachment is highly common among Stickler Syndrome children at a very young age.


Here is what is going on..we have 2 means in which he will potentially go completely blind.
1) Retinal detachment
2) IF he has a progressive loss of vision and function of these cells with future ERG's to help determine this, then he can either have Cone Dystrophy OR Achromatopsia.


What are these?  You might ask.  
Great questions.  I've researched them before, completed pathology tests and such on these common vision problems.  However, a refresher is great to help answer this question.
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Cone Dystrophy is:  
SOURCE
A cone dystrophy is an inherited ocular disorder characterized by the loss of cone cells, the photoreceptors responsible for both central and color vision.
The most common symptoms of cone dystrophy are vision loss (age of onset ranging from the late teens to the sixties), sensitivity to bright lights, and poor color vision. Therefore, patients see better at dusk. Visual acuity usually deteriorates gradually, but it can deteriorate rapidly to 20/200; later, in more severe cases, it drops to counting fingers vision. Color vision testing using color test plates (HRR series) reveals many errors on both red-green and blue-yellow plates.

Watching some video's on this condition to get a better grasp on what this is: 

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Achromatopsia is: 
SOURCE
A condition in which objects appear to be abnormally colored or tinged with color. Also called chromatic vision. 

1 an abnormal visual condition that makes colorless objects appear tinged with color.

2 a form of color blindness characterized by the imperfect perception of various colors. It may be caused by a deficiency in one or more of the retinal cones or by defective nerve circuits that convey color-associated impulses to the cerebral cortex. The most common defect in color sense is the inability to distinguish red from green, a defect evident in about 10% of men and 1% of women.
2nd SOURCE  [this website is extremely helpful with visual examples of what these eye conditions each look like!]

Achromatopsias are more of a colour distortion than an outright deficiency. Patients suffering from chromatopsias simply do not perceive certain colours as well as others. Chromatopsias take two forms. One of these is distinguished by the colour that predominate in vision (cyanopsia or xanthopsia); the other is even more rare that is experienced by some blind people (phantom chromatopsia).

ACyanopsia is characterized by the patient's illusory perception of a penetrating blueness in the scene. It is frequently observed in patients who have had recent cataract surgery in which the natural lens is replaced with a clear plastic implant. After living with the yellowing filtering effects (i.e., xanthopsia) of cataracts for so many years, the visual cortex apparently compensates by adding blue to the visual scene. This mechanism may be similar to the those that underlie colour constancy. The bluish tinge may persist for weeks or months but gradually it gives way to normal colour vision. The following image is a simulation of how cyanopsia may affect someone's colour vision.

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In my own MAMA words.
As they say all you can do is just take it one day at a time and manage the things that you can manage and let go of the things you don't have control over.  All I can do is research studies on these conditions, ways to help it, and more.  Despite the potential that this might be or lead up to becoming I can say that I'm committed for Colin.  To offer him the best visual options now before things start to get worse.  Explore and 'see' things he's never seen before. Enjoy life to the fullest!

Also, his 4th birthday is on the 18th.  This little guys body goes through so much and almost too much but yet he is still the most happiest, cheerful, bubbly, intelligent boy you'll ever meet.  He can pronounce dinosaur names better than I can!  Or name all of the Thomas the Train characters and what their function in the TV shows is.  He also hums cute little tunes for everything.  Like opening and closing the fridge he hums a quick little "do do dooooooo...." which really reassures me his niche for music.  One of the things I want to get him going on so that when things potentially progress he ca have something to fall back upon and rely on.  The ipad has offered plenty of piano lessons with free apps!