When we went to Amanda's neurologist appointment, I was curious to find out what stimulant medication he would want to try her on. I was a little frustrated and maybe a little upset that he DID NOT give us a script for a stimulant. He told me that he wanted to wait for reports from School before deciding IF she needed on a stimulant at all. He obviously DID NOT read the reports from her psychologist. So, I guess we will just wait it out a couple months. But, I won't let Mandi's academics suffer either. He is keeping her on the same dose of Keppra; since she seems to be doing very well on it.
Both girls had their Echos done on the same day. Rebekah was 18 lbs. 12 oz. and 29 inches at her 18 month well check and cardiologist appointments. Bekah's Echo went very well; just the slightest change. And, she got new doses of 1 ml Lasix a day and 2 ml of Captopril 3 times a day.
Mandi's went OK as well, but Dr. wanted to have a Heart CT ordered. She will have to get an I.V. because he wanted to do it with and without the dye contrast. That is scheduled for Tuesday, 8-9-11. I hope it isn't to traumatic for Mandi with her anxiety. But Mommy will be right there with her and of course she will be entitled to a new gift as well.
Tuesday, August 2, 2011
Saturday, July 16, 2011
Some New Issues
We have been noticing some new behaviors from Amanda the last few months. And not just us but her teachers at school and my parents. She would have these "staring spells"; so my Mom suggested it wouldn't be a bad idea to see a neurologist. When we went to the doctor and discribed her behavior, he seemed concerned and from there set up to have an EEG and MRI performed. He also referred us to a psychologist for our ADHD concerns.
Amanda had her MRI on April 25th and her EEG on May 5th. She was very good on both accounts; I was very proud. And, we went back to find out the results on May 9th. She does have seizures and we got her onto a medication called "Keppra" twice a day. I feel like "oh great something new" but at the very least we caught the seizures before they were worse.
We had her psychology testing done May 17th and May 24th., but had to wait for the results until June 23rd. She told us Amanda is just below average intellegence so that was good. She said with the high stress level in the family, she diagnosed Amanda with Adjustment Disorder which is the cause of her Anxiety Issues. IF they don't go away in a few years then she will be diagnosed with Anxiety Disorder. At this point, I am not sure she will. She gets anxiety in public places. She is also diagnosed with Cognitive Disorder which is treated exactly like ADHD but with her having seizures, she didn't classify it as ADHD. She gave us some book titles to help with parenting ADHD kids. She is leaving the medication choice up to her neurologist for the seizure and stimulant so they don't have adverse effects to one another. We won't go back to discuss the medications until July 27th.
Amanda had her MRI on April 25th and her EEG on May 5th. She was very good on both accounts; I was very proud. And, we went back to find out the results on May 9th. She does have seizures and we got her onto a medication called "Keppra" twice a day. I feel like "oh great something new" but at the very least we caught the seizures before they were worse.
We had her psychology testing done May 17th and May 24th., but had to wait for the results until June 23rd. She told us Amanda is just below average intellegence so that was good. She said with the high stress level in the family, she diagnosed Amanda with Adjustment Disorder which is the cause of her Anxiety Issues. IF they don't go away in a few years then she will be diagnosed with Anxiety Disorder. At this point, I am not sure she will. She gets anxiety in public places. She is also diagnosed with Cognitive Disorder which is treated exactly like ADHD but with her having seizures, she didn't classify it as ADHD. She gave us some book titles to help with parenting ADHD kids. She is leaving the medication choice up to her neurologist for the seizure and stimulant so they don't have adverse effects to one another. We won't go back to discuss the medications until July 27th.
Friday, July 1, 2011
6 Month Hiatus
Well, A.J. got about 200 miles away, to Mayo Clinic in MN. He got a phone call saying there were issues with the insurance and his condition wasn't "unique" enough.?? What did "THAT" mean? So he turned around and came home. I was happy that he was coming home But also had prepared myself and the kids that he would be gone. We thought Everything was Good to Go, apparently not.. This was in November 2010. There were questions about "WHAT" exactly needed to be fixed. And, there were 3 different opinions from 3 different Doctors. And, Should AJ go back to Work OR Stay Home?
He tried to go back to work and after 2 days back he ended up in the hospital for a week. After getting released, he was ordered to have oxygen at night for sleeping or as needed and to Stay Home until Fixed and Recovered. By this time, he was Off of Work for about 6 weeks.
After 4 months at Home and feeling HORRIBLE every day; he had his Open Heart Surgery Scheduled for March 14, 2011. Due to that being a Monday, he would have to go to MN the previous Wednesday, 3-9-11 for Pre-Op testing. So, I was forced to prepare myself and my kids to say Goodbye a second time to A.J.
He did great in the hospital and was HOME by Friday night, 3-18-11; 4 days in the hospital.
He is healthy and has the best Energy Level ( more than Me). He feels like a NEW MAN. And, he does feel and look Happier.
He tried to go back to work and after 2 days back he ended up in the hospital for a week. After getting released, he was ordered to have oxygen at night for sleeping or as needed and to Stay Home until Fixed and Recovered. By this time, he was Off of Work for about 6 weeks.
After 4 months at Home and feeling HORRIBLE every day; he had his Open Heart Surgery Scheduled for March 14, 2011. Due to that being a Monday, he would have to go to MN the previous Wednesday, 3-9-11 for Pre-Op testing. So, I was forced to prepare myself and my kids to say Goodbye a second time to A.J.
He did great in the hospital and was HOME by Friday night, 3-18-11; 4 days in the hospital.
He is healthy and has the best Energy Level ( more than Me). He feels like a NEW MAN. And, he does feel and look Happier.
Saturday, May 21, 2011
Family Motto
I just came up with a new motto or saying that represents my family pretty well.
IT IS WHAT IT IS!!! OR IIWII
DiGeorge Syndrome and all the symptoms that is associated with it are so complex and we are continuing to discover new symptoms with the kids. We cannot CHANGE the fact the DiGeorge is a part of our every day lives so it is what it is and we can just conquer all the issues that arise together as a family and together we can find the best solution for anything and everything.
What do you all think??
IT IS WHAT IT IS!!! OR IIWII
DiGeorge Syndrome and all the symptoms that is associated with it are so complex and we are continuing to discover new symptoms with the kids. We cannot CHANGE the fact the DiGeorge is a part of our every day lives so it is what it is and we can just conquer all the issues that arise together as a family and together we can find the best solution for anything and everything.
What do you all think??
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