I wanted to let you know how our visit to the Kluge Center went...

Jennifer Miller - posted on 02/25/2009 ( 4 moms have responded )

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Hi everybody,

I wanted to let you know how our trip to see the doctors at UVA went. Hopefully this information will help you and there are links at the bottom for more information on these diagnoses...

We first saw the developmental pediatric doctor. We went through previous history paperwork, had him go through a series of tests and he could tell immediately that he had severe Sensory Processing Disorder. We knew he had it, but not the severity. He also discovered low muscle tone (not lack of excercise, but its the opposite of Cerebral Palsy patients who can't lower their arms, he is too loose), Bad Motor Planning, which again we knew, but not the level. He is concerned and says he needs OT badly.

He told us that we need to get him involved with a motor and social activity that's not a team sport, especially as he gets older. Like swimming, its a team, but you race against the clock. Its on your level. If we was on a soccer team, he may be with the same age group but its harder for him. There is nothing wrong with his muscles, its nurological.

Kids with SPD are very innefficient with their bodies, they fatigue faster at the same activity that's normal to us (their brain has to work harder to sequence all the movements etc) and can easily develop anxiety and fear and discouragement, give up and end up a couch potato watching video games).

And He said he had 3 or 4 of the 12 signs of Autism, but he hesitated to label him with Autism. He says he has mild case. With what he was a year ago, (bearing in mind he'd have to have seen for himself) he probably would have been fully diagnosed with Autism. But he said that those on the low end of the spectrum with high cognitive ability can compensate and move further down the spectrum level, which he suspects is the case with Logan. He also said he has hard core Apraxia.

We saw a speech therapist, occupational therapist and physical therapist. They all agreed on the diagnosis. The speech therapist first tested him on his receptive language and and after about 15 minutes she stopped and said, "I guess we can stop now since we just finished and he succeeded with the 5 year old level... (bear in mind he is 3 years old.) But he is classic apraxia. He has severe delay there and could needs hard core therapy.

It's not something he will "grow out of". It is very similar to a stroke patient. Their brain comes up with something to say, but they had damage that destroyed the nurological pathways to produce the speech. His brain is not damaged, but the pathways act the same way. He needs hard core therapy to create new pathways in the brain to speak. We are looking into Augmentative Communication Devices to lesson his frustration at communicting.

Sign Language is hard with his hands and his word book is too limited and slow. Its not a fix to the problem, but the ST was adiment that expresive communication and learning to speak are too different areas. We need to work on speaking but not at the cost of him not being able to express himself somehow.

Logan walks like a 2 year old, and has trouble with stairs and balance. It is very hard to coordinate movements and balance to go down the stairs, especially not holding on to anything. He overcompensates and trips, he is not sure of where his body is (spacial relations). The PT thinks he would benefit very much from OT weekly with monthly bursts of PT.

The OT agreed he needed help. He only does activities that he is familiar with because he doesn't know how to deal with the new "thing". The food eating resistance is another issue along with the skin sensitivities. He said its very taxing to have SPD, its like one of us walking around all day with someone next to our ear scraping their fingernails on a blackboard.

I could go on, if you're interested. My brain is on overload. Here are some websites for more information if you are interested in learning more about these conditions.

Thanks to those who knew of this visit for the thoughts and prayers! God is in control and good will come of all this!
Jen

http://www.spdfoundation.net/

http://www.apraxia-kids.org/

http://dejean.net/motorplanning.html

http://www.ninds.nih.gov/disorders/autis...

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4 Comments

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Wendy - posted on 02/26/2009

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That is a lot to get in one day. We just went through the same things almost 3 weeks ago! Just know that there is a light at the end of the tunnel and now that you have a plan of attack life will get easier for him and you!

Janie - posted on 02/26/2009

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Hey Jen! Our 6 year old has a lot of the same muscle/proproceptive and vestibular issues. We put him in swimming and in gymnastics. He is definitely weaker than others his age but he loves the activities and the sensory input. We have OT every other week and once a week, he has a short session at school. It sounds like a lot but he's really benefitting from it all. I hope you are able to find the activities that work best for Logan and your family!

Niki - posted on 02/25/2009

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Wow did you guys gets lots of info. My brain would be on overload too. Hang in there... I hope that he can get all of the help he need now!

Niki - posted on 02/25/2009

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Wow did you guys gets lots of info. My brain would be on overload too. Hang in there... I hope that he can get all of the help he need now!

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