Author Topic: Diagnosing Special Needs  (Read 2554 times)

Offline NotLuckyButBlessed

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Diagnosing Special Needs
« on: July 06, 2007, 07:39:57 AM »


I am sure there are others out there with children, friends or family members who have an apparent "special need" but don't know how to go about getting it diagnosed, would like to read about symptoms others have experienced and share their own experience.

I will start with my sister who is 22yo. She is really sharp in alot of ways but one can tell, by looking and by the way she acts, that she is dd(developmentally delayed). She has never been diagnosed with a specific "condition". I would like to find out what it is. I feel we could better address her needs nutritionally. I also feel it would help her out with extended family when she acts certain ways. Sometimes I think it would be easier if people had more of an idea of what to expect or not expect from her.

What does chromosomal testing entail? Is it a blood test? Any other suggestions on how to go about this?
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Offline SC

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Re: Diagnosing Special Needs
« Reply #1 on: July 06, 2007, 12:59:37 PM »
Chromosomal testing is a blood draw where a vial is filled and sent to a lab for culturing. This takes about a week to 10 days or so, depending on the lab. You receive a form that shows a chart of the chromosomes and the technician's notes (well, your doctor does -- the one who orders the test). Detailed questions about what this means as far as heredity and/or the affect on the progeny, of siblings, etc. can be answered by a geneticist, who would review the results with you and discuss the implications.

If the chromosomal testing returns are normal, I would then recommend seeing a developmental neurologist. This person can evaluate at what stage her development is currently resting and detail an effective course of action to help her progress to the next level. These specialists believe that the human brain is plastic and not static. This means that we never stop learning and that an IQ test is not a measure of potential, just the performance of the individual on a certain day at a certain time. So, an IQ test is a snapshot, not a way to determine where a person will end up.

You can do a google search for developmental neurologist and you will find a lot of information on child development. I do know of one organization, The National Association for Child Development, that works with ALL cases of neurological impairment, including adults, accident victims, stroke patients, etc. We no longer go there for evaluations, but I highly recommend them as a very results oriented, positive group of people. They are a secular organization, but family focused. They are expensive and not covered by insurance. We were able to stay with them long enough to learn a LOT about how to proceed in educating our special needs child. I cannot recommend them highly enough. Their web site is www.nacd.org. They hold quarterly evaluation sessions at several major cities across the US every 3 months.

However, even if you cannot utilize their services, you will gain a great deal by listening to a seminar they offer by Bob Doman called, Guide to Child Development and Education - Miracles of Child Development (http://www.nacdbookstore.com/product_info.php?cPath=23_52&products_id=29&osCsid=fde010e4153f13a391fc4702c9e4fe51).
It is $75 and will get your creative thought processes going about the possibilities for your loved one's future.

MoreThanAlive.com has some books by Glenn Doman about teaching babies using the NACD methodology (How to Multiply Your Baby's Intelligence). The application would be different for an older child/adult, but it gives you a pretty good idea of what the hands on day to day would look like.

Bottom line, an organization like NACD can help you with diagnosis, nutritional guidelines, and with a plan of action for more development whether or not the chromosome testing yields conclusive results. HTH
« Last Edit: July 06, 2007, 01:02:04 PM by SC »
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Offline blessedwife

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Re: Diagnosing Special Needs
« Reply #2 on: August 28, 2007, 06:22:54 PM »
Does anyone know of some referral service/website/whatever that could help me find a doctor for my kids?  I would like to find someone who would respect the fact that we do not vaccinate.  I have a daughter who exhibits many signs of autism, but there are other issues as well:  she has a wandering eye and is very clumsy, very delayed speech.  My husband is now at the point where he would like her to be seen by someone, but he (as well as I) is VERY protective of who she will be seen by.

Anyway, if any of you ladies could give me a lead, I would greatly appreciate it :)  (We live outside of the San Diego, CA area)

Offline IMPersuadd

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Re: Diagnosing Special Needs
« Reply #3 on: August 28, 2007, 07:03:29 PM »
BlessedWife,

We found our naturopath by starting with the state association of naturopaths and asking for referrals for NDs who specialized in what we were looking for.  Our ND happens to be a "DAN" doc as well.  So I would start with your local/state organization, DAN, NATHHAN and places like that.  If you have an idea of the "specialty" you are interested in sometimes they can steer you more readily to a good doc.

hth
Lori
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Offline blessedwife

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Re: Diagnosing Special Needs
« Reply #4 on: August 29, 2007, 10:01:11 AM »
Thanks, IMPersuadd!

I don't suppose any naturopath would take PPO (?)

This is the route that we would like to take, but the $$$ is the issue. 
How much does a visit typically cost?

We so rarely go to the doctor.  We don't do well baby visits or physicals, so I'd really just be interested (at this point) to seek some help for my daughter.

Funny I didn't even think about NATHHAN!  ::)

Offline healthybratt

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Re: Diagnosing Special Needs
« Reply #5 on: August 30, 2007, 05:48:52 AM »
I found a doc in our area that is a D.O. but practices many natural healing techniques.  Since she is a D.O. her regular visits & consultations are covered by insurance; albeit, many of her treatments are not.  All this to say, it would most likely depend on what kind of doc (MD, DO, Chiro, etc) and what treatments you opt for on any given occasion.

I don't suppose any naturopath would take PPO (?)
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Offline DebAnn

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Re: Diagnosing Special Needs
« Reply #6 on: February 15, 2012, 06:35:11 AM »
Hello,
It has been a long time since I've posted anything on WellTellMe but I am hoping that someone here might be able to help.  I just received news that a dear friend's new grandson has some unexplained birth defects.  He was just born on Feb 13, 2012.  He has an extra pinky finger on one hand and a partial extra pinky on the other hand.  Neither of these extra digits has bone, they just hang limply.  His breathing is also faster than average.  He is breathing about 70 breaths per minute and the average (according to his pediatrician) is 50.   My friend, the grandmother, happens to work at this pediatrician's office and she said he leans toward conservatism when it comes to tests but he ordered a chest Xray and blood work for the baby which concerns her that there is more going on then just some extra digits.  She and her daughter, the mother of the baby, are all about conventional medicine and doctoring so I am sure that other than the standard pre-natal vitamin and diet, the mother did not give the baby the best possible start through nutrition but of course out of ignorance and trust in the "experts".  If these symptoms bring any certain disorder or syndrome to mind please post and share so that I can narrow down all of the possible research options.
Blessings,
DebAnn
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Offline Precious

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Re: Diagnosing Special Needs
« Reply #7 on: February 15, 2012, 09:29:06 AM »
Tachypnia (rapid breathing) can be a sign of an enlarged heart.  Extra pinky fingers is known as ulnar or post-axial polydactyly.  Could they be related?  Sure.  Could they be completely unrelated?  Yep.

Here are some syndromes that have both of those features in common (this is just a cursory list--it's not exhaustive): Jeune Syndrome, Joubert Syndrome, Trisomy 13, Bardet-Biedl Syndrome, and McKusick-Kaufman Syndrome.

The good news is that pediatricians are very determined when it comes to an accurate diagnosis.  It's great that you are able to be a resource and help support this family.

Offline DebAnn

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Re: Diagnosing Special Needs
« Reply #8 on: February 15, 2012, 09:36:01 AM »
Thank you, Precious, this will at least give me some starting points!
Rejoicing in hope,
       patient in tribulation,
              continuing instant in prayer.
Romans 12:12