Jonah had an appointment this morning that I was very anxious for. Anxious in a good way, not a freaking out kind of way.
After being given the runaround by various people about what to do about his "possible" apraxia, I got in touch with a professor at the university who is regarded for her work. Amazingly, she called me back and even more amazingly, wanted to meet.
The appointment was 2 hours long, and my boy did so well. I don't know how he made it through all of the tests, he was so patient. This doctor was the first one to ever look in his mouth, ask about how he slept and how his voice sounded, amongst other things. She was the first doctor or teacher to care about the fact that he lost all his sounds and words at 15 months old. She cared more than any other person has thus far. Don't get me wrong, I am grateful for the programming he has received the last 2 years, but many times I felt like there was more to it and that something more could be done. Obviously, I didn't know what.
This afternoon, she called. We spent an hour on the phone talking (I am so thankful that mom #2 was here to watch the boys then!). She gave me more information, pretty much all new, than I've had in awhile. I will get the full report in a few weeks, but here is the gist:
-Jonah does NOT have apraxia. He has characteristics of dispraxia that have resolved
-Jonah has a mild motor speech disorder and mild dysarthria
Her biggest clues were his denasal/hyponasal voice, him sleeping with his mouth open, his low pitch and sound patterns, and his rate of speech. His rate of speech is 96 words per minute. Average for a 5 year old is about 131wpm, and with children with speech sound delays (like he has), it drops to 120wpm. So he is quite low in relation. This is not something she wants to change. It works for him and changing that could be a mistake.
Much of this is to do with a possible airway obstruction as well as his tongue not being able to make the movements it needs to. There is a therapy solution available, which didn't tolerate well due to his gag reflex (he also has hyperactive bite, gag and tongue reflexes). This will take some imagination to find something he can tolerate that is successful at the same time.
How he came to have this is still a bit of a mystery. There is the genetic component, but the red flag was that he lost his sounds. It could be one of many things - something like a virus, bacteria, or other organism could have damaged part of his brain, or it could be another form of brain damage. She even questioned if he may have had a stroke that we didn't know about. Oy, my heart would have sank if I wasn't so sure that this didn't happen. Obviously, we aren't aware of anything that could have caused this, so who knows. And he has no brain scans to see, so a mystery it will remain.
She did mention that he is a bit of a puzzle to figure out with everything going on. That said, I am elated about today. We have a plan for him in the fall thanks to her. We have a true diagnosis with answers.
To say today was a good day would be an understatement.
After being given the runaround by various people about what to do about his "possible" apraxia, I got in touch with a professor at the university who is regarded for her work. Amazingly, she called me back and even more amazingly, wanted to meet.
The appointment was 2 hours long, and my boy did so well. I don't know how he made it through all of the tests, he was so patient. This doctor was the first one to ever look in his mouth, ask about how he slept and how his voice sounded, amongst other things. She was the first doctor or teacher to care about the fact that he lost all his sounds and words at 15 months old. She cared more than any other person has thus far. Don't get me wrong, I am grateful for the programming he has received the last 2 years, but many times I felt like there was more to it and that something more could be done. Obviously, I didn't know what.
This afternoon, she called. We spent an hour on the phone talking (I am so thankful that mom #2 was here to watch the boys then!). She gave me more information, pretty much all new, than I've had in awhile. I will get the full report in a few weeks, but here is the gist:
-Jonah does NOT have apraxia. He has characteristics of dispraxia that have resolved
-Jonah has a mild motor speech disorder and mild dysarthria
Her biggest clues were his denasal/hyponasal voice, him sleeping with his mouth open, his low pitch and sound patterns, and his rate of speech. His rate of speech is 96 words per minute. Average for a 5 year old is about 131wpm, and with children with speech sound delays (like he has), it drops to 120wpm. So he is quite low in relation. This is not something she wants to change. It works for him and changing that could be a mistake.
Much of this is to do with a possible airway obstruction as well as his tongue not being able to make the movements it needs to. There is a therapy solution available, which didn't tolerate well due to his gag reflex (he also has hyperactive bite, gag and tongue reflexes). This will take some imagination to find something he can tolerate that is successful at the same time.
How he came to have this is still a bit of a mystery. There is the genetic component, but the red flag was that he lost his sounds. It could be one of many things - something like a virus, bacteria, or other organism could have damaged part of his brain, or it could be another form of brain damage. She even questioned if he may have had a stroke that we didn't know about. Oy, my heart would have sank if I wasn't so sure that this didn't happen. Obviously, we aren't aware of anything that could have caused this, so who knows. And he has no brain scans to see, so a mystery it will remain.
She did mention that he is a bit of a puzzle to figure out with everything going on. That said, I am elated about today. We have a plan for him in the fall thanks to her. We have a true diagnosis with answers.
To say today was a good day would be an understatement.
July 8, 2011 at 9:45 PM
great to have a diagnosis.
you know, my friend has a 'mystery' son too and someone finally (after 9yrs) gave him an MRI and they had LOTS more answers. i think you should push for that in light of the 'possible' stroke etc.
but this lady sounds good--- i hope she'll answer lots for you!
July 9, 2011 at 1:23 AM
So happy you got some answers.