Wow... it has been a long time since I have updated here.
We are coming towards the end of our Summer Break. We have a little over a week to go and then everybody goes back to school on August 3.
Benji is moving up to the 4 year old class room in the developmental preschool. He has made much improvement in all areas, although he is still considered globally delayed.
In June we under went standard developmental testing along with autism screening. The doctor believes that Benji is more at risk for ADHD combined type than anything else. As the primary caregiver and mother of Benji, I disagree. The doctor believes it's the ADHD because Benji's attention span lasts about 20 minutes. Also because Benji has a hard time adjusting to schedule change. And when Benji is over-sensitized he gets hyper and has meltdowns.
Benji has sensory integration disorder. He is very tactile defensive. He is also sensory seeking. Examples... eating pancakes and Benji gets syrup on his hands, he has to get it washed off as soon as possible. Benji enjoys 'crashing' into the wall, or falling. We handle his sensory stuff by doing exercises. He jumps on the mini-tramp, swings in the sling swing, swims in the pool, body massage, bouncy ball, and stretching exercises. When doing things that will set off his tactile defensiveness we keep it to a minimum and at meals keep a damp wash cloth handy.
Benji also has food intolerances. His is VERY lactose intolerant tot he point we avoid lactose, casein, whey and anything that hints of having to do with cow's milk. Benji can not tolerate food dyes, specifically red 40 but others are suspected, we just discovered another chemical that sets him off too. (azodicarbonamide) His reaction is extreme hyperactivity and moodiness.
It has been known for quite some time that food intolerances can mimic ADHD. So why, when a child has known food intolerances are they still quick to point to ADHD?
I am disheartened right now when it comes to doctors listening to parents. I know my child. I also know that there is something going on. For now his labels are global developmental delay ~ NOS ... The Sensory Integration is I suppose an informal diagnosis now.
Our other concern with Benji right now is that we notice while he is sleeping there is a lot of restlessness. Normally that wouldn't bother me because I know little ones can be active in their sleep. But that combined with moments throughout the day where he just stares off has me concerned. Working on getting in to the doc... again. Praying the suspicion is wrong.
Showing posts with label lactose intolerance. Show all posts
Showing posts with label lactose intolerance. Show all posts
Thursday, July 23, 2009
Sunday, October 05, 2008
Please??? Please Mom?
Monday, September 22, 2008
So, Mom is thinking...
I was thinking about Benji's diagnosis' here lately. And it's not that I am worried, more so concerned and there is a difference. Something in my gut is telling me that we are missing something. Let me explain.
Benji was born and at about 18 hours we got the notion that something was wrong with his heart. The resident pediatrician at Baptist heard a murmur and was concerned. He wanted to have it checked immediately instead of waiting a few days. That led to the craziest week I think I have ever had in my life. Within 10 hours Benji had his first of many echos, the cardiologist discovered that Benji has a bicuspid aortic valve which resulted in the murmur. That in an of itself is not a red alert, people live their entire lives with the malformed valve and are okay. His has stenosis too so that gives him yellow to orange alert. It has to be monitored. The red alert was his aorta as it come out of the heart, he had what was called a CoArctation of the aorta. The aorta was too narrow to allow the blood to flow to the lower extremities. So at one week of age Benji had closed heart surgery. The surgery used a process of subclavian flap to fix the aorta. They also closed the patent ductus arterious. So... symptom one, Heart defects.
While he was in childrens it was suggested that he be monitored for hypotonia especially with his hips. His first pediatrician didn't think anything about it. But we got hooked up with Early Intervention and Foundations and they were concerned with it. Kept referring to him having low tone. I have just recently come to understand this. It doesn't mean that he's not strong. It means that neurologically the muscles aren't working the way they are suppose to. So.. symptom two, hypotonia.
Once Benji was home and settled, we noticed that if I nursed him after drinking milk or eating cheese, or ice cream little guy would get really bad gas and sometimes throw up. So we removed milk products from my diet and he did great. He nursed for 14 months after the doctors told me that he probably would have to be a bottle fed baby. But, he was definitely allergic to milk. So... symptom three, lactose & casein intolerant.
We also noticed Benji was particular about fabrics. He loves satin and smooth fabrics where the rough fabrics upset him. When he was little little he LOVED going to the store and such, you know when babies typically get overwhelmed? Now he gets overwhelmed... now that he is 3. A few months before his third birthday he was diagnosed with Sensory Integration Disorder and borderline PDD-NOS or Asperger's The problem there is that he matches AS except that he also has Speech Apraxia according to the SLP. So... SID, possible autism, and Speech Apraxia.
Then to make things fun last December we got the dx of ketotic hypoglycemia after he had a hypoglycemic seizure when his sugar dropped to 22. They at first thought that maybe his propranolol could have contributed to it but he's been off since May and over the summer we had two incidences where it dropped to the 60s after play outside in the heat.
And the last thing is he is flat footed and bow legged. LOL... seriously now... his ankles pronate and he is to wear inserts that help him ALOT.
Anyhow... my concern is with all of this going on with him and all the therapy he is getting, are we missing something? Is there a bigger dx that includes all of this? And no, he doesn't have Downs Syndrome and it's not Cerebal Palsy. My concern goes along the lines of it being something neurological. My dad has progressive super nuclear palsy (Parkinson's Plus), my great aunt had MS, and my grandmother has essential tremors.
Anyhow... I am going to get him back into the peds here within the month to push for neurological testing. I think that is the next best step. I know when we went through the genetic testing they had asked if neurology sent us to them.
Gotta go... gotta leave in 15 minutes...
Benji was born and at about 18 hours we got the notion that something was wrong with his heart. The resident pediatrician at Baptist heard a murmur and was concerned. He wanted to have it checked immediately instead of waiting a few days. That led to the craziest week I think I have ever had in my life. Within 10 hours Benji had his first of many echos, the cardiologist discovered that Benji has a bicuspid aortic valve which resulted in the murmur. That in an of itself is not a red alert, people live their entire lives with the malformed valve and are okay. His has stenosis too so that gives him yellow to orange alert. It has to be monitored. The red alert was his aorta as it come out of the heart, he had what was called a CoArctation of the aorta. The aorta was too narrow to allow the blood to flow to the lower extremities. So at one week of age Benji had closed heart surgery. The surgery used a process of subclavian flap to fix the aorta. They also closed the patent ductus arterious. So... symptom one, Heart defects.
While he was in childrens it was suggested that he be monitored for hypotonia especially with his hips. His first pediatrician didn't think anything about it. But we got hooked up with Early Intervention and Foundations and they were concerned with it. Kept referring to him having low tone. I have just recently come to understand this. It doesn't mean that he's not strong. It means that neurologically the muscles aren't working the way they are suppose to. So.. symptom two, hypotonia.
Once Benji was home and settled, we noticed that if I nursed him after drinking milk or eating cheese, or ice cream little guy would get really bad gas and sometimes throw up. So we removed milk products from my diet and he did great. He nursed for 14 months after the doctors told me that he probably would have to be a bottle fed baby. But, he was definitely allergic to milk. So... symptom three, lactose & casein intolerant.
We also noticed Benji was particular about fabrics. He loves satin and smooth fabrics where the rough fabrics upset him. When he was little little he LOVED going to the store and such, you know when babies typically get overwhelmed? Now he gets overwhelmed... now that he is 3. A few months before his third birthday he was diagnosed with Sensory Integration Disorder and borderline PDD-NOS or Asperger's The problem there is that he matches AS except that he also has Speech Apraxia according to the SLP. So... SID, possible autism, and Speech Apraxia.
Then to make things fun last December we got the dx of ketotic hypoglycemia after he had a hypoglycemic seizure when his sugar dropped to 22. They at first thought that maybe his propranolol could have contributed to it but he's been off since May and over the summer we had two incidences where it dropped to the 60s after play outside in the heat.
And the last thing is he is flat footed and bow legged. LOL... seriously now... his ankles pronate and he is to wear inserts that help him ALOT.
Anyhow... my concern is with all of this going on with him and all the therapy he is getting, are we missing something? Is there a bigger dx that includes all of this? And no, he doesn't have Downs Syndrome and it's not Cerebal Palsy. My concern goes along the lines of it being something neurological. My dad has progressive super nuclear palsy (Parkinson's Plus), my great aunt had MS, and my grandmother has essential tremors.
Anyhow... I am going to get him back into the peds here within the month to push for neurological testing. I think that is the next best step. I know when we went through the genetic testing they had asked if neurology sent us to them.
Gotta go... gotta leave in 15 minutes...
Friday, February 01, 2008
Heart Month
It's that time of year again. You know all the Valentine Cards and candy and parties and such with school and Banquets at Church and all. Everybody is focusing on love.
Well, this is our third year that we have put aside February for Congenital Heart Defect Awareness. March 2, 2005 Benji was born with CoArctation of the Aorta and Bicuspid Aortic Valve with Stenosis. On top of that he had a patent ductus arteriosis. We had no idea that his heart was defective, and to this day we do not know why.
Benji had closed heart surgery on March 9, 2005 to repair the CoA and close the PDA. Dr. Carla Christian did the surgery using the subclavian flap plasty. He has thrived and as of November 2007 it was declared his aortic valve is stable.
Along with Benji's heart defects we also are dealing with speech apraxia, hypotonia in his ankles and feet, sensory integration issues, lactose intolerance, and good old fashioned stubbornness. LOL..
I hope to post daily in the month of February about CHD's in order to bring more awareness to Congenital Heart Defects. Do join and pass a link on to those that might be interested.
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