Wednesday, December 3, 2008

We Have a DIAGNOSIS!!!!!

For those of you who have children with special needs, you probably understand how important and exciting it is to have a diagnosis for your child to explain why things are going the way they are. I have been praying for the day we can pretty much know what is wrong with Josh and the best way to handle it. He has more than one thing going on, but there has been alot of issues going on that aren't explained. So when his toe walking came out this week, I started doing some more research on it and what can cause it. When I typed in all his symptoms, one thing kept coming up. It was something I think I may have heard about, but knew nothing about it. While reading it, I found out it is diagnosed by a therapist and there is a profile you fill out to help you determine if this is what is indeed wrong with your child. So today when his OT therapist came, we started talking about these issues, and she told me she met with his PT therapist and they had come to a conclusion about a diagnosis for him. Some things that have came about the last couple weeks have made that diagnosis very apparent. So when I told her what I have come across in my research and what kept coming up as a possibiltity, she got a huge smile on her face. She told me that without a doubt, that is what he has. It's called Sensory Integration Disorder or SID for short. She said she didn't even have to do the profile to see if it was SID or not. She had us do the weighted vest, certain excersizes, ect to see how he reacted before she talked to me about it. So after this weeks developments of his toe walking, not climbing and afraid to walk on surfaces ect.. she was finally 100% sure he has SID.

So you are probably wondering what it is exactly. I sure was! Basically it means that the 5 basic senses, smell, touch, hear, taste and sight, are all integrated in your brain to give you the information of where your body is, what is going on around you, ect. SID is a neuroligical disorder that means the brain is not able to put the senses together on it's own. That is why his balance is so bad... he truly does not know where his body is in space. He won't walk on new surfaces because his body can't process it. The weighted vest gives him more sensory input to help him, but he still has to learn out to make sense of what is going on. His brain doesn't motor plan well, so that is why he can't gauge how fast his hands are going and why he seems to only have a hard, go for it all reaction to things. He can't soflty pat my face.. he slaps me cuz he can't figure out how to slow it down. So alot of his issues are making sense now! He is going to have to learn how to process the things going on around him.

This is a lifelong disorder, there is no cure, but it is manageable with therapy. It will get better eventually and as long as we are willing to help and be patient, he can do most anything. He still has other issues going on, like feeding problems and his microcephaly, but this explains alot of the rest of it... and that is so good to hear. So if you have any questions let me know. He has an appt with his Neurologist down at Primary's again next monday, so I will get an update up after that. But I think we have gotten to the bottom of all the problems he is facing now. Yea for Josh!!

5 comments:

Tanya said...

Wow. But that does sound optimistic, so that is great! I'm so glad your therapist was already aware of what is going on! This does all sound good. Glad you're excited!!!! :D Very happy for you!

Heidi said...

Great news. I hope now that they know what is going on they will be able to move his therapy in the right direction. Good luck with everything. You and Josh are in my prayers.

Desiree and Lars said...

So glad you got some explanation to what is happening. Really helps to understand. I think it will give you patients and love for him. So happy for you to find out. Love ya guys.

Chan said...

I'm glad you have a diagnosis. That will make it easier to know how to deal with it! Hope all is well in UT! ( :

Lori said...

You know, it is relieving to have a diagnosis, even if the diagnosis is overwhelming. I am a true believer in therapy, I'm so glad you have awesome therapists that are keeping an eye on him. You're a good Mom too.. keep working on it. Some things they told me with my oldest would be a "life long problem" have became nearly extinct after years of therapy. (she's almost 6 now) yay for a diagnosis and good luck with everything!