We been going through a roller coaster (little one) for the last couple of weeks. I was so excited when Benji's pediatrician finally saw what we were talking about with Benji that I lost my mind. Okay, maybe not completely... but I did forget to follow up with the developmental pediatrician.
I found myself a week after the appointments, with no follow ups scheduled. So of course, I had to start emails and phone calls.
Benji goes to the Food Allergist on April 16th. It's in Franklin, but I figure if we can get answers it will be good. It would be great to know if he is outright allergic to things. We know the digestive problems with cows milk. We know the hyperactive reaction to anything with red 40. We avoid high fructose corn syrup due to his hypoglycemia, we also try to limit other sweeteners. I still have pages to fill out for that appointment. (I love paper work, at least I make copies after I feel things out now.)
Finally got the call back yesterday about developmental testing.. It won't be until June 16th. That has it's pluses and minuses.... I am suppose to have his teacher fill out a questionnaire on him close to the test date. We get out of school at the end of May... hopefully it will be good enough.
I believe Benji is about to hit a growth spurt, his moods are erratic and he is sleeping alot more than normal these last couple days. He just got off of antibiotics too... He had strep. Little guy always keeps us busy.
Thursday, April 09, 2009
Friday, March 27, 2009
Another Domino
So.. Benji went to physical therapy today. He has made lots of progress. So much so that for him to continue therapy would be almost a waste of time.
I knew this, but his PT also helped with the sensory stuff to a degree.
So.. we are going to go about a month and see how he does without the PT. I can call or email at anytime or even bring him by without a problem. (This is really good because his PT is in charge of him getting his inserts in his shoes for the pronation)
While I am so glad that Benji is making progress, I am having a hard time letting go. He was discharged in January from OT, now PT. This means I will have to work harder with play dates and all.
Looks like I will be the scheduling queen for the summer... and I will HAVE to have back up plans. :o)
I knew this, but his PT also helped with the sensory stuff to a degree.
So.. we are going to go about a month and see how he does without the PT. I can call or email at anytime or even bring him by without a problem. (This is really good because his PT is in charge of him getting his inserts in his shoes for the pronation)
While I am so glad that Benji is making progress, I am having a hard time letting go. He was discharged in January from OT, now PT. This means I will have to work harder with play dates and all.
Looks like I will be the scheduling queen for the summer... and I will HAVE to have back up plans. :o)
Wednesday, March 25, 2009
The Good, The Bad, The Stimmy! Pt 2
So... the last post was about our visit to Vanderbilt Children's CDC and seeing the developmental pediatrician Friday. This post is about Monday's visit to our regular pediatrician for Benji's well check.
I feel I need to note that at the CDC Friday, Benji was VERY well behaved.
Obstacle #1 Monday.... "I wanna stay home and play Batman."
Obstacle #2 ... "I don't want to go to doctor, I wanna stay home."
These were the first two hints that I was going to have a very enjoyable morning.
Loaded the young master into the Expedition and buckled him in. Hopped in myself and we began the 24 mile trip to the pediatrician's office. (We live in the sticks... to get a doctor with permissions at Vanderbilt, he's the closest.) The trip in was rather uneventful until we got in close the the office... then it starts.
"I wanna go home." "I wanna play batman."
I had forgotten that a few weeks ago they had a lesson week on doctors and dentists. I had forgotten the relief on his face when he accepted that Dr. Cooper wasn't that kind of doctor... you know, the kind that give SHOTS.
We get in and we check in. Uneventful. Then nurse Tammy comes and gets another child and it starts...
"I dun wan shot momma."
Of course, I came up blank and couldn't remember if any were due. (I am one of those mom's that don't believe it was the vaccinations that caused Benji's problems... with everything else going on, I think it was always there.) So I told him he probably didn't need any today. I had even resolved it in my mind that we wouldn't get them then, if he needed them we would come back another day.
So that was the waiting room.
Then they call us back. It was a different nurse that we didn't know, but Benji seemed okay at first. It was time for a hearing test. I laughed inside as I realized what he was doing. See for the hearing test he had to wear the headphones and have the button to push in his hand. He would hear the sound and push the button but then keep pushing the button like he was flying an airplane or a fighter jet. It was cute. The nurse didn't appreciate it.
Next was height and weight. The young Benjamin is 39 pounds and 41 inches tall.
Next was vision. This was fun. He couldn't stand still... He was wiggling everywhere. He was still able to read the chart though. I finally got him to stand at the right spot (still wiggling) and he told the nurse every single shape on the next to the last line. And the first 4 on the last line.
Once we got into the exam room we did the blood pressure which was 94/60 on the right arm. (Arm is important since he had the surgery on his aorta.) We went over his history and concerns and then waited for the doctor.
While we were waiting, we had to strip down to undies. He wasn't too crazy about that. It was then that he decided to jump... off the exam table to the floor. I caught him just as the doctor and a fellow came in. Benji was wild. Got him back on the exam table and he grabbed the 'flashlight' from Dr. He started examining himself... It was funny until he dropped the light.
Dr was asking about the concerns with Benji's eating (lactose/casein intolerance, red 40 sensitivity, MSG sensitivity/intolerance, the hypoglycemia) his pottying (even though I try to keep him in undies we do have a lot of accidents.) and then Dr brought up about the CDC and such. I explained how that went.
Through the conversation Benji would interject random things about Batman and shots and siblings, and school, and.... you get the picture. He was also being wiggly and giggly.
When it came time to the exam, I actually had to hold Benji so that Dr could do the exam... Mr Tickles...
Physically Benji is doing great. His height has jumped up to above 95% and his weight is right at 90%. Which is good considering his heart and then the hypoglycemia. He is growing, and thriving.
So... as we were talking and Dr saw this wild thing in his exam room he asked me similar things as Dr. Cooper. And came to pretty much the same conclusion. We may be looking at a 4yo with Asperger Syndrome. This is the first time that Dr has entertained the thought. It may have to do with the existing diagnosis of Sensory Integration Disorder.
So we are waiting for an appointment referral to a food allergist/nutritionist.
All and all the visit was good. Benji has progress. And we are taking steps to narrow down what is going on.
I feel I need to note that at the CDC Friday, Benji was VERY well behaved.
Obstacle #1 Monday.... "I wanna stay home and play Batman."
Obstacle #2 ... "I don't want to go to doctor, I wanna stay home."
These were the first two hints that I was going to have a very enjoyable morning.
Loaded the young master into the Expedition and buckled him in. Hopped in myself and we began the 24 mile trip to the pediatrician's office. (We live in the sticks... to get a doctor with permissions at Vanderbilt, he's the closest.) The trip in was rather uneventful until we got in close the the office... then it starts.
"I wanna go home." "I wanna play batman."
I had forgotten that a few weeks ago they had a lesson week on doctors and dentists. I had forgotten the relief on his face when he accepted that Dr. Cooper wasn't that kind of doctor... you know, the kind that give SHOTS.
We get in and we check in. Uneventful. Then nurse Tammy comes and gets another child and it starts...
"I dun wan shot momma."
Of course, I came up blank and couldn't remember if any were due. (I am one of those mom's that don't believe it was the vaccinations that caused Benji's problems... with everything else going on, I think it was always there.) So I told him he probably didn't need any today. I had even resolved it in my mind that we wouldn't get them then, if he needed them we would come back another day.
So that was the waiting room.
Then they call us back. It was a different nurse that we didn't know, but Benji seemed okay at first. It was time for a hearing test. I laughed inside as I realized what he was doing. See for the hearing test he had to wear the headphones and have the button to push in his hand. He would hear the sound and push the button but then keep pushing the button like he was flying an airplane or a fighter jet. It was cute. The nurse didn't appreciate it.
Next was height and weight. The young Benjamin is 39 pounds and 41 inches tall.
Next was vision. This was fun. He couldn't stand still... He was wiggling everywhere. He was still able to read the chart though. I finally got him to stand at the right spot (still wiggling) and he told the nurse every single shape on the next to the last line. And the first 4 on the last line.
Once we got into the exam room we did the blood pressure which was 94/60 on the right arm. (Arm is important since he had the surgery on his aorta.) We went over his history and concerns and then waited for the doctor.
While we were waiting, we had to strip down to undies. He wasn't too crazy about that. It was then that he decided to jump... off the exam table to the floor. I caught him just as the doctor and a fellow came in. Benji was wild. Got him back on the exam table and he grabbed the 'flashlight' from Dr. He started examining himself... It was funny until he dropped the light.
Dr was asking about the concerns with Benji's eating (lactose/casein intolerance, red 40 sensitivity, MSG sensitivity/intolerance, the hypoglycemia) his pottying (even though I try to keep him in undies we do have a lot of accidents.) and then Dr brought up about the CDC and such. I explained how that went.
Through the conversation Benji would interject random things about Batman and shots and siblings, and school, and.... you get the picture. He was also being wiggly and giggly.
When it came time to the exam, I actually had to hold Benji so that Dr could do the exam... Mr Tickles...
Physically Benji is doing great. His height has jumped up to above 95% and his weight is right at 90%. Which is good considering his heart and then the hypoglycemia. He is growing, and thriving.
So... as we were talking and Dr saw this wild thing in his exam room he asked me similar things as Dr. Cooper. And came to pretty much the same conclusion. We may be looking at a 4yo with Asperger Syndrome. This is the first time that Dr has entertained the thought. It may have to do with the existing diagnosis of Sensory Integration Disorder.
So we are waiting for an appointment referral to a food allergist/nutritionist.
All and all the visit was good. Benji has progress. And we are taking steps to narrow down what is going on.
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