OFIH Posted July 9, 2010 Share Posted July 9, 2010 Our older son has Autism, SPD, hypotonia, and some other issues. Our younger son has SPD, hypotonia, developmental delays, tons of allergies, and other things. Today we had our follow up with his neurologist about his Fragile X testing. After a very long meeting (he doesn't have Fragile X), we finally got down to what's going on. He has Autism as well. Sigh. This isn't anything we didn't expect. We have been surprised he wasn't DX'd sooner. He hasn't been "normal" since the day after his birth. This has been the longest 29 months of our lives. But to hear someone finally say it officially really hits home and makes it all the more real. Quote Link to comment Share on other sites More sharing options...
sleepymommy Posted July 9, 2010 Share Posted July 9, 2010 Our older son has Autism, SPD, hypotonia, and some other issues. Our younger son has SPD, hypotonia, developmental delays, tons of allergies, and other things. Today we had our follow up with his neurologist about his Fragile X testing. After a very long meeting (he doesn't have Fragile X), we finally got down to what's going on. He has Autism as well. Sigh. This isn't anything we didn't expect. We have been surprised he wasn't DX'd sooner. He hasn't been "normal" since the day after his birth. This has been the longest 29 months of our lives. But to hear someone finally say it officially really hits home and makes it all the more real. :grouphug::grouphug::grouphug: I'm sure this must be a very long and difficult journey to go through, my thoughts are with you and your family. Quote Link to comment Share on other sites More sharing options...
Guest Posted July 10, 2010 Share Posted July 10, 2010 :grouphug::grouphug: Yes, having it made official somehow seems to put a burden on your shoulders that wasn't there before. I'm so sorry. That's just such a lot to deal with. Quote Link to comment Share on other sites More sharing options...
chiguirre Posted July 10, 2010 Share Posted July 10, 2010 I'm sorry to hear about your sons' special needs. I have 2 on the spectrum as well. It can be very stressful to deal with more than one child's sn. It can also be easier sometimes because you do indeed kill 2 birds with 1 stone. My ds2 has made great leaps and even my oldest who is severely affected by his autism is much more independent than I though he'd be when he was younger. Autism is a tough road, but it doesn't have a definite destination. Quote Link to comment Share on other sites More sharing options...
RamonaQ Posted July 10, 2010 Share Posted July 10, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
sbgrace Posted July 10, 2010 Share Posted July 10, 2010 :grouphug: It's so hard to hear the words even when you see it coming. Side note: Are you aware that hypotonia, developmental delays, autism are flags for metabolics. If not, would you like information about that area? My son's issues are similar and metabolic treatment has really helped him. Quote Link to comment Share on other sites More sharing options...
OFIH Posted July 10, 2010 Author Share Posted July 10, 2010 I am always, always interested in any information to help our kids. Please, pass that information on to me. :001_smile: Quote Link to comment Share on other sites More sharing options...
Ottakee Posted July 10, 2010 Share Posted July 10, 2010 I was also thinking about the possibility of a metobolic disorder or mitochondrial disorder---esp. with 2 children with multiple issues. I would ask your neurologist to run the blood tests for these. My older dd ended up with a muscle biopsy as well but I think they can now run the tests using just a blood test---lots of blood but still easier than surgery. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted July 10, 2010 Share Posted July 10, 2010 (edited) Here is the information I put together for mitochondrial/metabolic signs after my son was diagnosed. http://www.mothering.com/discussions/showthread.php?t=734501 hypotonia and developmental issues/autism are very common with mitochondrial disorder and also seen in other metabolic conditions especially those affecting fat metabolism. If you see signs and want to know what testing options you have please let me know. In the area of mitochondrial especially who to see and etc. is tricky as many doctors (including genetics and even metabolics) still don't have the awareness of the condition to see the signs and expertise to test and treat despite it being one of the most common if not the most common metabolic conditions. I'm happy to help you. Treating my son has made a lot of difference. You've got at least some of the most common warning signs (how is energy?) and two children affected so I would definitely encourage you to look into this if it seems to be a possible explanation. I always worry I'll overwhelm people! But if you want any more information please let me know via pm or email or whatever! I'm happy to help. Edited July 10, 2010 by sbgrace Quote Link to comment Share on other sites More sharing options...
Geo Posted July 10, 2010 Share Posted July 10, 2010 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
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