[blindkid] Questions About Adopting Blind Child from India

Mon Mar 19 01:56:05 UTC 2012

Richard,
Thank you! This has been very helpful.
Mariana

On Sun, Mar 18, 2012 at 2:11 PM, Richard Holloway <rholloway at gopbc.org>wrote:

> There are health risks associated with the melatonin which are not
> associated with a light box. I would discuss these concerns in detail with
> a doctor before trying melatonin. (Maybe even seek an alternative medical
> opinion.) Given that there are are really no risks with using a light box,
> I'm always frustrated to hear how many doctors don't even suggest them
> first. They can be pretty quick to suggest a pill. My suspicion is that
> they feel more control over the treatment with a pill than to suggest
> sitting in front of a light or out in the sun.
>
> Alaska Northern Lights made our box. Their URL is below:
>
> http://alaskanorthernlights.com/lightbox/#!prettyPhoto
>
> The sleep center we used was in Atlanta. I think this is their current web
> site:
>
> http://www.choa.org/childrens-hospital-services/pulmonology/sleep-center
>
> Most of what they deal with has nothing to do with blindness which makes
> it even more interesting how quickly they solved our situation.
>
>
> Richard
>
>
>
>
> On Mar 18, 2012, at 1:26 PM, Mariana Mitova wrote:
>
> > Hi Richard,
> > What is the brand of the box you are using for Kendra?
> > Alex was seen by a doctor who keeps insisting on Melatonin and I would
> gladly abandon it.
> > Mariana
> >
> >
> > On Mar 18, 2012, at 12:15 PM, Richard Holloway <rholloway at gopbc.org>
> wrote:
> >
> > I would avoid the melatonin if possible. Maybe save that for a last
> resort. Our daughter has no light perception at all. At one point, for
> nearly two years, she was on roughly a 25 hour day. (Every day she would
> wake and go to sleep close to an hour later than the previous day.) After
> roughly 3 weeks, she'd have had one fewer day than her mother and I had,
> schedule-wise. Then the cycle would repeat. It was rough, and this went on
> for over a year-and-a half!
> >
> > We finally learned of a sleep disorder clinic. The had us keep a "sleep
> diary" to chart her sleeping hours. Only after seeing the information
> collected did we really understand what was going on. We had been so
> confused and sleep deprived we had just never seen the pattern. All we knew
> was she would seemingly never sleep. The clinic suggested a light box, like
> what it often used in extreme northern locations like northern Alaska &
> Canada, for S.A.D. (Seasonal Affective Disorder). This condition effects
> typically sighted individuals durning times of the year when there is
> virtually no sunlight causing some people to stay sleepy and depressed.
> >
> > The doctor suggested using a light box for 30 minutes each morning. I
> refrained from telling the doctor he must be completely out of his mind for
> suggesting we put a light box in front of a child with no vision
> whatsoever. Turns out I'm glad I kept my thoughts to myself. We saw a huge
> change the first day we used the light box. That was nearly 8 years ago and
> we still use the box daily. Our sleep issues are gone.
> >
> > Several times, we stopped for a few days or a week to she if it
> mattered, or when we went out of town and thought we could get by without
> it. Every time we try that, sleep issues seem to return. Apparently the
> light causes the pineal gland to produce more of your own melatonin
> naturally. It seems it can do this even if you have no light perception. In
> fact our daughter wears scleral shells. She has virtually no eye on one
> side and a fully detached retina on the other, with both of those fully
> obscured by her prosthetics, so there's just no way this works in our case
> because of light getting to her eyes.
> >
> > These boxes can be prescribed and insurance may pay for them, but we
> learned after we got ours through insurance that you can order them on-line
> (no prescription needed) for a fraction of what they are sold by medical
> supply companies. Seems like ours cost about $600 through insurance and
> then we found the exact same box, as in same company and model number, for
> under $200 later. That company had apparently bought the same box and
> charged the insurance company over $400 to deliver it and plug it in.
> That's all the did!
> >
> > I can't speak highly enough about what this did to help us and how easy
> it was to start using. There seems to be no real down-side apart from the
> expense of the box, and if you have a very bright sunny location you can
> get to every morning, you may be able to produce a similar result for free!
> >
> > Good luck,
> >
> > Richard
> >
> >
> >
> > On Mar 17, 2012, at 7:42 PM, Merry-Noel Chamberlain wrote:
> >
> >> Arielle,
> >> We adopted a little girl from China who is blind - she has some very
> low vision.  We just kept her up during the day and soon she was on the
> right schedule.  It took a few weeks, though.
> >> Merry-Noel
> >>
> >>
> >> ________________________________
> >> From: Arielle Silverman <arielle71 at gmail.com>
> >> To: blindkid at nfbnet.org
> >> Sent: Saturday, March 17, 2012 5:32 PM
> >> Subject: [blindkid] Questions About Adopting Blind Child from India
> >>
> >> Hi all,
> >> I saw this on another list and I know several of you have experiences
> >> with adopting blind children. If any of you have answers for Lisa and
> >> Gordon you can write to them directly at the email addresses they give
> >> in their signature. Or, if you prefer to respond on-list I can forward
> >> your responses to them. I did advise them to join the Blindkid list,
> >> but I think they ran into some technical problems.
> >> Thanks for helping them out!
> >> Arielle
> >>
> >> ---------- Forwarded message ----------
> >> From: Gordon Shattock <gpstraveller at gmail.com>
> >> Date: Sat, 17 Mar 2012 13:10:49 -0700
> >> Subject: [LCA] Re: Jet-lag and LCA, assessment errors made due to
> >> vision impairment and our daughter is now home and settling in
> >> To: LCA at yahoogroups.com
> >> Cc: Gordon Shattock <gpstraveller at gmail.com>, "Lovely Lisa Lloyd
> >> (home)" <LisaCLloyd at gmail.com>
> >>
> >> Hi Everyone!
> >> We are home from Bangalore, India with our beautiful daughter, Ana
> Reshma,
> >> who we just adopted. She has LCA. She is 4 1/2 years old. We have
> noticed
> >> that she is having a difficult time sleeping at night and seems to not
> have
> >> fully switched over to CA time, even though the rest of the family has
> done
> >> so several weeks back now, including our other 4 1/2 year old daughter.
> I
> >> have heard that due to her very limited vision (which seems to be only
> some
> >> light perception) that it is more difficult to get over jet-lag. Another
> >> adopting parent suggested we give her melatonin. Does anyone have any
> >> suggestions?
> >> When we took Ana Reshma to an audiologist in Bangalore the day after we
> >> took her out of her orphanage, she was diagnosed with a 40% hearing
> loss.
> >> We took her to an audiologist at Lucile Packard Children’s Hospital and
> she
> >> diagnosed her with the same level of hearing loss. We then thought she
> had
> >> ushers syndrome and not LCA. Well guess what? We had her sedated at the
> >> children’s hospital only to learn that both of her ears were so totally
> >> impacted with wax, and once that was cleaned out they tested her
> hearing on
> >> the ear drum itself and discovered her hearing was perfectly normal!
> What a
> >> relief that was! We are wondering if the fact that she is visually
> impaired
> >> made it difficult for them to access her hearing, and if her visual
> >> impairment might be challenging for other specialists to access her as
> she
> >> has a whole round of assessments coming up through the school system
> next
> >> month. In her hearing evaluation it seems that there must have been some
> >> assessment error due to her vision impairment as we were told that the
> wax
> >> impaction could only account for about 10 –15% of her hearing loss in
> >> total.
> >> Looking forward to hearing your thoughts...
> >> Warm regards,
> >> Lisa & Gordon
> >> lisaclloyd at gmail.com
> >> gpstraveller at gmail.com
> >>
> >>
> >> "I cannot do everything
> >> but still I can do something
> >> and because I cannot do everything
> >> I will not refuse to do something that I can do."
> >> Helen Keller
> >>
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> >
> >
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