NOAH AOC

New to all this...and still learning so please excuse any ignorance or naievity from my silly questions but I have two OA boys - one 22months and one just four months... my older son, Dean screamed up to eight hours a day between 4 weeks old and 9months (until diagnosed) because we had no clue about light, sensitivity, nystagmus causing tiredness, etc... now im able to manage my second son, Drew much better but i still find him very hard to put to sleep. unfortunately both my boys have lactose intolerance too so I have had colic added to all this..

I want to ask is there any validity to the theory that when they begin to relax and they shut their vision down for a rest, that the other senses overcompensate and they are much more sensitive to sound, touch, etc?  It seems to be the case - we cant play music in their rooms, cant be around too noisy areas, need to make the room as boring as can be so that the boys dont get too distracted by curtains blowing in the wind etc... this of course, i have been told could be the reason for very sensitive to their tummy pain of bowel spasms that they are experiencing as part of colic too... true? Any good strategies for sleep times? Between these two I am losing too much sleep than I care to think about and need to find a way to improve my situation.

at 22 months i still have to put dean to bed two to three times a day due to tiredness and Drew goes down eight times a day he is only awake for about 35mintues and he is tired again - he has a very slow nystagmus and i would imagine a lot of his day is blurry and he gets tired of trying to focus when we have a little play.  it is sometimes so hard to get them to sleep because of the noise the other is making and this leads to hypersentivity and hyperactive behaviour that gets a little out of control and they are even harder to settle... i would love to know some strategies that other parents use if they find the same.

Another question is about Kinesiology. has anyone done these kinds of exercises with their children and have they found it made a difference. I have seen a dramatic improvement in the size of Deans null point but with so many factors it is hard to tell whether kinesiology is the thing making the difference.

Speaking of the little clip on koalas... they just woke up... i was enjoying a quiet moment to myself.

Thanks for your responses! 

 

 

 

 

 

 

My son Michael has albinism and when he started early childhood his VI teacher told me t watch out for unknowlagable people ( such as teachers) who might try to diagnose him as ADD or ADHD. She told me that it is common for a child with albinism to have those traits but it is usually ( not always ) due to the visual impairment and they tend to be a bit eccentric. All children especialy babies tend to get overstimulated. That could be an issue for your kids right now. Michael to this day does not like loud music but other than that he is not overly sensitive. I believe I was told a long time ago that your other sences getting better per say is a myth. However it does seem that Michael  ( and other VI  people i have met ) do learn to use them more as well as more fully. Michael relies heavily on his memory which I do think is better than most because he "exercises" it so much. I hope this helps and you are of course more than welcome to email me anytime.

Nikki

nikkib0414@yahoo.com

 

Thanks Nikki for your response. My little Dean is such an active boy I had a feeling it might be just his way of coping with overtiredness. I'll have to somehow split the house up for a while so that one can have a break from the others noise while sleeping. I have been given a ton of strategies for over stimulated babies from a sleep clinic in Perth but none of them seem to work on my boys which is why I was curious if it had anything to do with albinism. Thanks again!

Emerson has OCA1a and very bad nystagmus and strabismus. He does seem to tire more quickly than other babies and at 18 mos old still takes frequent breaks throughout the day to suck on his bottle for comfort and "zone out." I know this is late for a bottle, but it seems to comfort him and help him recharge. He was difficult to get to sleep and keep asleep as a little baby, but not really due to oversensitivity. Once I weaned him from breastfeeding at a year and let him hold a bottle as he fell asleep, he started sleeping much much better. Now he takes one nap and sleeps through most of the night.

 It seems very possible that the oversensitivity is related to OCA, but I would ask your pediatrician for other suggestions if you haven't already. I wish I had better strategies to help you!

What are the kinesiology excercises? I've never heard of those...

Best of luck...I know there's nothing worse than being sleep deprived!!

Cassi

I was told that b/c of Bryns pale optic nerve and the optic pathways to her brain being underdeveloped that she didnt really see the sublte changes between  light, slightly dark, Dark, Really dark, therefore her brain didnt release enough Melatonin. Plus, its always  too light to her b/c of the transilliumination. Right now she is always up by 5 am b/c thats when the sun starts brightening her room, even with dark blue sheets over her window.

We see a sleep clinic at Sick Kids b/c Bryn also has Obstructive Sleep apnea and they moniter it with frequent sleep studies.

One of the things they mentioned was longer lasting Melatonin. But I would never give it to a child w/o a sleep dr reviewing his case.

Bryn has been on Melatonin for years. We are seeing the developmental ped soon and the long acting Melatonin was something we were going to talk about apparently.

That is very interesting about the melatonin.  My son had such a difficult time with sleep.  He only slept 20 to 40 minutes at a time.  He did not sleep through the night until 3 years old.  Both of my kids had colic my son we said had the colic that never ended.  My son has to have a pitch black room with a sound machine still to fall asleep. We used to face him in a dark corner and simulate fake steps to make him fall asleep as a baby.   I think my daughters eyes just got tired and she would close her eyes.  The both slept a lot in the baby bjorn.  My daughter is still in a sling when she is not feeling well.  We lost electricity this month and they knocked right out at a normal time.  It was amazing.

 Jenna I am so glad you are back!!! 

Hi chartley, thanks for your response.

Kinesiology is a theory (very brief version) involve fixing your nerve pathways between your eyes and brain. In OCA/OA ppl the pathways take a dfferent route and/or longer to connect the eye to the brain. By placing a hand over the eye and the opposite hand at the back of the head on the opposite side, your own electromagnetics causes the persons pathways to be interefered and tries to rectify itself strengthening pathways as it practices better routes.  thats the theory - a lot like reiki but uses the own persons energy, not trying to draw it from somewhere else. If you hit the right spots on each side of the head it does become quite warm for the person, but not for your hands. Same for anypathway of the body.  If I lay Drew on his left side and hold hands either side of his bowel, it helps his colic/wind pass easier. But left side, warm hands, etc, who knows if it due to pathways etc. Whatever works for us! If it isnt invasive and just might ease their discomfort - i'll try anything!

 

 

Thanks for your response Jenna - thats so funny you should mention up at 5 am b/c my son is up at 5am on the dot, without fail every single morning even with blackout curtains and as much as I have spent the last 6 weeks trying to make him stay in bed till at least 5:30 I think I might as well give up the battle. Very interesting stuff about the melatonin... Luckily, I know a good sleep dr... on top of all these colic critters and albinism issues, I have a husband with sleep apnea and snores like a truck who is a regular at the sleep dr...  I look forward to when the kids are at last 7yrs old or so and i might get some sleep one day!   

 

 

Aww, Thank you sweetie! Nice to see you too. Your little princess is so beautiful!!!!

My son is a year old, and at 6 months after screaming all day being over sensitive to somethings and under sensitive to others, he was diagnosed with sensory integration dysfunction. Often mis diagnosed as ADD or autism, though kids with those can have sensory issues. you should definately look it up. It saved us. OT can really help. It's a spectrum thing and so it's hard to find everything that works, but once you get a handle on it, your kids can learn to cope. Please look into it. THere's a couple of national sites, and a really good book that is recommended by EVERYONE with sensory integration kids. it's called "The Out of Sync Child". It really helped my husband and I understand elliott so much more. It was like finding out about albinism, that same feeling of "finally an answer".