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.
Did the speech path offer any suggestions for regaining the movement? One possibility of an exercise is to put a dab of something he likes (icing, ice cream, honey) just at the limit of where is able to move his tongue right now. I'm not sure if this would help,….
I pray you will find a solution.
Is he on anti-psychotics, like risperidone or risperdal or something like that? They do cause problems with movement, muscle control, I don't know about the tongue specifically but that could be something related to it. We're constantly checking our son for movement problems/muscle problems because of it.
Gavin has been on every single anti-psychotic. He is currently on Clozapine, the most tightly controlled medication in the US. Gavin did develop movement problems about 1 year ago and actually had to be admitted to the Cleveland Clinic for a week. It was something to do with the changing from one to the other. That was very scary. Now with Clozapine, he has to have bloodwork every week. He only gets 7 days at a time and the pharmacy has to receive lab results first. Then they fax them to the manufacturer and then they release the weeks supply to us.
I think the issues is tied to the overall neurological regression.
Just to give you some piece of mind. The movement issues associated with anti-psychotics are pretty obvious. Gavin looked as though he was in late stage Parkinsons. It started off small but quickly got so bad that he had to be rapid detoxed. Great idea to keep an eye out though. The longer they are on the meds the less likely there is to be problem. 🙂
i'm so sorry to hear that . may God help you and Gavin . my son is asperger as well .he lost his reflexes as well but I think that he can move his tongue so far. he has speech problem but I don't think that he can not move his tongue . the younger son is pre- verbal has problems with moving his tongue. I feel that my kids and yours are on the same track !!!!
it's so sad that you work hard with your kids to achieve certain points and then you watch them regressing and you can not do any thing to prevent it…
Israa,
Thank you. My heart goes out to you as well. It's one of the most helpless feelings I have ever experiences. Thank you for sharing a bit of your life with me. If I can ever help, please let me know.
Information is power and the more you know the closer you are to finding out the answers to whats going on with Gavin. By the way it would have made your day if you could have seen me rolling my tongue around up and down checking it out while I was reading. (Who thinks of these things? I would never suspect someones tongue to not work!)
You are so right. The frustrating part is that each step leads us to more questions rather than answers. Thanks for the visual, it made me laugh. You're right, who would think of something like that. Thanks 🙂
I am so sorry to hear the worrying news. I so hope you will find the answer to your son’s problems. All I can say is that a huge hug and my thoughts are on their way to you.Please keep us updated.
Thank you for the kind thoughts. 🙂