January 15 Brady will have his second scope.
Dr. Hart is concerned with Brady's poor growth. Currently Brady weighs 37 pds which is in the 10th percentile. He continually moves down in percentiles. He defenitely has malabsorption issues. He is concerned as I am about his pancreas. He is going to do a pancreatic enzyme stimulation by administering Secretin during the scope. I am anxious to see if Brady does in fact have pancreatic insufficiency. We'll accomplish this by aspirating the intestinal contents and sending them to an outside lab to assess the function and adequacy of his pancreatic enzymes. Brady often has moderate amounts of fat in his stool indicating he's not making enough lipase enzymes. We'll see.
Brady started the GFCF diet March 21, 2006....nearly four years ago. Starting this August we started allowing him to have gluten and casein with enzymes. I am afraid that he's not able to tolerate them even with enzymes. Dr. Hart agreed much to my dismay.
I'm anxious for this procedure.
Monday, December 21, 2009
Friday, November 20, 2009
Seriously?!
I want to blog more often I just often lack the energy but with what I'm about to discuss I might have some early morning time to start blogging.
I'll get to his lab results in a minute but first let me discuss our newest issue. Brady has decided about 1-2 times a week to get up early. Like WAY early. This morning he woke at 2:45 am. So I've been up for a couple hours already and it's only five. -sigh- I'm so tired. It's really going to hurt later. I'm actually scared this isn't a temporary thing. I can't imagine doing this week after week.
Labs...EEG was normal. The mainstream docs called his MRI normal despite some mild abnormalities. Dr. Mumper however isn't going to look over the abnormalities. She things a SPECT scan would be a good idea to see the brain function. We've got to keep looking!
I'll get to his lab results in a minute but first let me discuss our newest issue. Brady has decided about 1-2 times a week to get up early. Like WAY early. This morning he woke at 2:45 am. So I've been up for a couple hours already and it's only five. -sigh- I'm so tired. It's really going to hurt later. I'm actually scared this isn't a temporary thing. I can't imagine doing this week after week.
Labs...EEG was normal. The mainstream docs called his MRI normal despite some mild abnormalities. Dr. Mumper however isn't going to look over the abnormalities. She things a SPECT scan would be a good idea to see the brain function. We've got to keep looking!
Sunday, May 24, 2009
Loving the neurologist!!
Finally a mainstream doctor who wants to find out what the hell is going on with Brady! She said it's not ok that he lost his language and we have to turn all stones to see if we can find why.
She ordered....
an MRI
24 hour video EEG
full metabolic workup
neurogeneticist
I am very interested to see the results. My biggest fear is that they will all be normal. What the heck do you do with normal? You can fix normal. His EEG is scheduled for June 1.
She ordered....
an MRI
24 hour video EEG
full metabolic workup
neurogeneticist
I am very interested to see the results. My biggest fear is that they will all be normal. What the heck do you do with normal? You can fix normal. His EEG is scheduled for June 1.
Saturday, May 2, 2009
Could it be seizures?
Could seizures be the reason Brady is unable to talk anymore? I need to know why he's losing his ability to speak.
Brief history. As a baby Brady babbled but never developed any words. As his autism became more apparent his babbling disappeared. He started ABA at 23 months old. By 27 months he said his first word "go". Over the course of the next year (2-3 years old) he accumulated 55 spoken words. Over the course of the next year (3-4 years) he slowly started losing those words he worked so hard for. Here we are with his 5th birthday just 28 days away and Brady is unable to speak a single word. In fact he can only replicate one sound now "eeeeee".
You would think this loss of language would have someone other than his family up in arms. You'd think they'd want to get to the bottom of it and find out why he's losing all ability to speak. The sad reality is we're the only ones who seem concerned. Everyone else is perfectly content to use other methods of communicating. For now those methods are necessary but I think panic and urgency should accompany them.
Monday I have an appt with Brady's pediatrician to dicuss this complete and utter loss of language. It's NOT normal for children with autism to lose the ability to speak at all. I want to do another EEG to rule out seizures. It's been three years now. What is going on with him?
Brief history. As a baby Brady babbled but never developed any words. As his autism became more apparent his babbling disappeared. He started ABA at 23 months old. By 27 months he said his first word "go". Over the course of the next year (2-3 years old) he accumulated 55 spoken words. Over the course of the next year (3-4 years) he slowly started losing those words he worked so hard for. Here we are with his 5th birthday just 28 days away and Brady is unable to speak a single word. In fact he can only replicate one sound now "eeeeee".
You would think this loss of language would have someone other than his family up in arms. You'd think they'd want to get to the bottom of it and find out why he's losing all ability to speak. The sad reality is we're the only ones who seem concerned. Everyone else is perfectly content to use other methods of communicating. For now those methods are necessary but I think panic and urgency should accompany them.
Monday I have an appt with Brady's pediatrician to dicuss this complete and utter loss of language. It's NOT normal for children with autism to lose the ability to speak at all. I want to do another EEG to rule out seizures. It's been three years now. What is going on with him?
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