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Special needs kid but no diagnosis
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#1 Posted : Tuesday, March 02, 2010 12:32:26 PM(UTC)
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We have a daughter, Abigail, aged 8 who stopped breathing when she was born despite the fact that she was delivered at 36.5 weeks. Hyline membrane disease is what they called it. She's been tried and tested for 8 years now and still no-one can tell us what her diagnosis is. Abigail has low muscle tone and because of this tires easily and on top of this has a developmental delay (very broad spectrum). She struggles to cope academically. Currently she attends Eros School in Athlone. She is repeating Gr 1 this year again which wasn't easy but she's realising the benefits. She struggles to concentrate and we have tried every natural product under the sun but nothing works. Now we are retrying her on ritalin which doesn't seem to be making any difference. Abigail doesn't look any different from any other child so its difficult for people to understand her. She's extremely temperamental and very clingy. But we understand her. Once she gets to know you and takes a liking to you, she loves you with her soul. Abigail has taught my husband and I to appreciate the smaller things in life. Her strength and determination is amazing. Her love is pure and unending and for this we are truly grateful. She has brought us so much joy and we would trade all the anxiety or feelings of frustration in the world for what she gives us.

We would be grateful if anyone who has experienced the same or a similar situation can give us some more insight.

regards
Barbara
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#2 Posted : Wednesday, March 03, 2010 5:57:01 PM(UTC)
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Barbara,

Your not alone, there are many whose children have no diagnosis. We call it Syndromes Without A Name, www.undiagnosed-usa.org. My daughter is 13 and still no diagnosis.
Guest *Sarah*
#4 Posted : Monday, April 05, 2010 9:30:56 PM(UTC)
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Is the Ritalin for the concentration concerns? You mentioned low muscle tone, I'd think that this would be more likely the reason for the concentration problems. I assume the low muscle tone is being addressed with OT? Perhaps you can speak to the therapists and teachers involved with your child and see if there is a way to allow her to rest during the school day as this might help with the concentration.

HUGS
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#5 Posted : Tuesday, April 06, 2010 11:54:50 AM(UTC)
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It has been suggested that Ritalin is only correctly prescribed (as in, the correct medication for the problem) at MOST around 3% of the time. It is MASSIVELY overprescribed. Generally, it's more for the teachers than for the children.

O.T. is the way to go - but real results will take over a year to manifest.
Guest *Sarah*
#6 Posted : Tuesday, April 06, 2010 9:20:08 PM(UTC)
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I'm a teacher and see SO often how Ritalin is overused and abused. Too often it is seen as the easy answer and actually does nothing. For those children it is truly needed for, it works wonders, but so many are mis-diagnosed. Having gone back into mainstream teaching from special needs, I have more kids on Ritalin this year in mainstream than I did last when majority had some or other form of learning difficulty. And the worst part - teachers 'diagnosing' kids. UGH.

JohnS
#7 Posted : Sunday, August 14, 2011 9:14:47 AM(UTC)
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My daughter Lauren now 24, was born with her umbilical cord around her neck. 6 months later after her 3 in 1 vaccination began siezuring. No-one has been able to specifically daignose whether her condition is as a result of the umbilical cord incident at birth or the reaction to the 3 in1 vaccination. This problem of unclear or no diagnosis is a major problem. Have you been to the St John's Red Cross hospital ? They have some excellnt people there. Research diet as well, we used the Ketogenic Diet for our daughter, it was difficult but it worked well.
So much of your daughter's qualities are what I have experienced with my Lauren. Is Abigail in mainstream school ? If not investigate getting her into a school of inclusion, it is costly but worth it. Contact Sun Valley School of inclusion in Cape Town - Noordhoek.

Don't give up.
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