Speech appointment today

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donnajane

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Our little man had a very interesting speech appointment today. He has been assessed at just over 6 month delayed with his speech, he's almost 2 1/2. She said this is based on today's appointment which is a good day for him so when he is in his bad periods it would be a much larger delay.
She said she will look at getting us to use picture cards with him for the periods when he is unable to communicate verbally and is also going to come out to his child care and observe him there as she said he may be more or less verbal in that environment. His 45min lasted almost 1hr 45min so I was very impressed overall. He dose have a few autistic traits but as she said so do most 2 1/2 yr olds.
I was very interested in 2 things she mentioned. The first she said it sounded like he may have metabolic issues the second was she asked me re his head size and I showed her the graph and the sudden spike which happened, only in his head size, when his issues really became pronounced at 7 1/2 months old. She then asked has he seen a genetics specialist re this as that can be related to a genetic disorder. A genetics specialist is one of the specialists he hasn't seen.
Like the other specialists who have seen him she said he is a contradiction as he is very low in some areas and fine in areas which are linked.
So the mystery continues with our little man.
It was so nice today though that before his appointment he came into my work for 20minutes and everyone commented on how it was the first time they have seen his eye's so live and him interacting with everyone so much. Usually they see him when I have had a call from child care, at my work, that he is having a bad day more seizures than usual etc and I go and collect him so it was nice for my friends to share in how wonderful a little boy he can be when everything is "ok"
I will make sure I mention the comment re genetic testing to his neurologist and paed when I see them next.
 
That's great that she's taking the time to really get to know him, and has practical suggestions/workarounds for you to try with him. I think it's really interesting that she mentioned the possibility of a metabolic disorder, since some of his other docs have suggested that as well (if I remember right). A lot of the metabolic disorders are genetic in origin, so it makes sense to test for that too.
 
That speech pathologist is a gem!!! I like that she's considering different medical angles and how and why he's on target in some areas and delayed in some that are linked.

We've dealt with numerous speech pathologists, and, ever since he lost his speech at age 5, most wrote Jon off as hopeless and unqualified for speech therapy. I've had to go to war to just get some basic services for him.
 
Thanks for the support. Karen how terrible for you to have to fight so hard for Jon to get basic services.
I know for our little man things seem to take forever. He has been on the waiting list for early intervention since Feb this year and it was taking so long that is why we went with the private Speech Pathologist. The cost is a lot but you can't put a price on your child's health and development. She told me that we would probably be waiting around another 6 months, in other words a year from when he was first referred, for early intervention. It just makes me so sad that everyone knows how important getting on top of things early is yet they don't supply the support frame for this.
We will be going private again for his Occupational Therapist as we really don't want to wait. So glad I am still able to work to help give our son the option of going private.
Thanks again.
Donna
 
Yes, that's what we're doing now -- paying for private speech therapy -- insurance doesn't cover it -- even though his loss of speech was caused by the seizures, not because of his DS (he was speaking in sentences before age 5, when the seizures got bad, and now he's almost nonverbal). And (when we were in the States) the school was the one saying he was hopeless, and didn't want to give him any therapy. The private therapy is expensive, and he also needs OT and PT -- to get what he really needs would be costing us $1500 a month, and we don't have that. So...we have to pick and choose. Fortunately, we have a nice speech therapist who concentrates on training us in what to work on with Jon throughout the week.
 
Its terrible as a parent having to decide which treatment you can afford for your child. I am only continuing to work full time to help our little man get the treatment he needs. Thankfully I am a teacher and I do get quite a few holidays.
He has been in a really bad way for the last couple of days. He is having lots of periods of being manic, then periods of having trouble with his legs, what look like headaches, crying agitated etc. I took him to the GP this morning as he was really struggling they told me to bring him straight down. He was in such a state when we went in they put us in an area away from the other people waiting to see a GP. Of course by the time a GP was free to see him he had calmed down and was walking again, just so glad i had footage.
All we got out of the appointment was he is not ill? But has a slight temp 37.7 (his usual temp is 35.2 but for the last 2 weeks it has been sitting around 37.8 to 39.4) We are going away to see my parents in a few days, its a 3 1/2 hr trip each way so at least I know he has no "visible" infection. My mum is then coming back with us so she can look after our 3 and 5yr old while I took him to his Neurologist. GP said to make sure I mention his manic states, huge mood swings and his temp. I swear I felt like so silly today as he was so different in the GP's office. I am well aware that some of what he does will probably be behavioral but he is so different to our older kids and the GP assured me at his age he can't fake eye's rolling up and trouble walking.
Sorry had to vent. All I want is what we all want help for our kids to be the best they can be.
Donna
 
Hi Donna --

Karen posted in another thread about a rare (only 25 cases in Britain) genetic metabolic disorder called Glut-1 deficiency. They've been able to make progress in one case using the ketogenic diet.

I realize it might not be a match for your son, but some of the details sounded familiar. Here's a link to a description of Glut-1: http://childbrainfoundation.org/g1d.html
 
Thank you so much for bringing this to my attention and Karen thank you so much for posting it. Don't know how I overlooked this post.
It was quite a weird sensation reading about Glut-1 deficiency as often out little man ticks a few boxes but there were just so many this time. There was only one thing out of the list which didn't fit and that was being born with normal head size then signs of delayed brain growth and development, our little man was born with a just below normal size head then suddenly had a large growth spike when his condition first became worse and he was rushed into the ED at 7 1/2 months it has had another growth spurt recently.
One thing reading about GLUT1 deficiency has made me think that his issue is definetly metabolic/genetic before it was always a strong suggestion but now after reading the information I am convinced it is metabolic even if it is not GLUT1 deficiency.
Thanks again. I think this forum is going to help his specialists work out his condition.
 
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