I have been documenting our journey with Gavin. This journey has recently taken a dramatic turn towards the more complicated. For those of you that are new to this blog and subsequently our story, and here is the cliff notes version.
Gavin was diagnosed with Aspergers in 2005. However, since then, the he has experienced continual regression. Its been a slower process but we have reached a point where it’s pretty obvious something is wrong.
About 2 months ago we discovered that Gavin had basically no immune system and now needs monthly infusions in order to keep from getting sick. We also found out that he has lost his reflexes as well.
We have been everywhere in search of help, including the Cleveland Clinic and Akron Children’s Hospital. However, despite our best efforts and an army of experts, we are left with more questions than answers.
We have one last option and that takes us back to see a Dr. Cohen at Akron Children’s Hospital. He is internationally known as the leader in his field. He specializes in mitochondrial and metabolic disorders. He is a neurologist as well and used to be at the Cleveland Clinic prior to moving to Akron.
This will mark the end of the road as far as a search for a diagnosis goes. There really isn’t anything left that we can do if we don’t find answers here.
Now your all caught up.
This past week, we finally got Gavin back into speech, as he has been on a waiting list.
In true Lost and Tired fashion, what was supposed to be a simple speech evaluation turned into much more than that. We discovered that at least part of Gavin’s speech regression is being caused by a loss of movement in his tongue.
He can move his tongue out, side to side and down. However, he cannot move it up. He can’t touch his tongue to his nose or even him top lip. His tongue no longer has the ability for upward movement.
This causes his tongue to muffle the sounds he makes, especially his “R’s”.
We don’t know how long this has been the case and whether or not everything is related. My guess is that it’s relatively new, as his speech regression is also relatively recent as well.
It also interfere with him eating and so that explains why he has become so messy.
I honestly don’t know what to make of this because…..well I just don’t know. This is very concerning to me as I fear this means that neurologically things have progressed even further than we were aware of.
Anyone have any experience here? I know not everyone can touch their tongue to their nose but to not be able to produce anyupwards movement is not normal.