Friday, May 25, 2012
Behavioral Specialist Visit
Monday we traveled to the children's hospital to see the behavioral specialist. He was able to see Kennan in action. Both by Kennan's own actions and on some video clips we had taken. Kennan is heavy on the ODD tendencies at this point. The doctor is starting him on some meds to see if they will help. They are non-stimulant (which created issues for Kennan) and it's not an antipsychotic med (hallelujah!!). We will return to see him in six to eight weeks. By then we should know if the meds will benefit Kennan or not. In the mean time the doctor is going to call a colleague and do some additional research to see what else might be of benefit to Kennan. It was a good visit. We hope that we may find some additional things that will help Kennan to move forward.
Thursday, May 17, 2012
Once Again . . . .
On Monday we are once again off to see the pediatric behavioral specialist. We were suppose to have a follow up appointment about a month after our initial visit but the doctors office never called to set up the visit. We got busy with birthday, Easter, baptism, and company and didn't follow up until this week. When we called they said we are kind of booked up but let us see if we have an available opening - pause - oh we have one for this Monday can you come then. Of course we said yes.
Kennan has been having a rough time the last week or two. I think largely because school is winding down for the year. Any change for these kids can bring monumental stress. It makes life hard for everyone in the family. They just can't really manage any heightened state.
Kennan will apologise for doing something and immediately turn around and do the exact same thing again - and then he will ask why he is in trouble. It is very frustrating for both him and us. What for most of us would be a "mole hill" event is a "giant mountain" event for him.
So it really may be a good time to go and visit once again with the behavioral specialist.
On a side note we saw the endocrinologist a second time (at the same time as we visited with the behavioral specialist the first time) and we finally received the results of Kennan's bone x-ray. He is measuring as if he was an eleven year old instead of an eight year old. We have to go back and see her again in either September or October. If at that point his growth patterns are still way ahead of his age then they will make some decisions on medication possibilities. The fun never ends!!
Kennan has been having a rough time the last week or two. I think largely because school is winding down for the year. Any change for these kids can bring monumental stress. It makes life hard for everyone in the family. They just can't really manage any heightened state.
Kennan will apologise for doing something and immediately turn around and do the exact same thing again - and then he will ask why he is in trouble. It is very frustrating for both him and us. What for most of us would be a "mole hill" event is a "giant mountain" event for him.
So it really may be a good time to go and visit once again with the behavioral specialist.
On a side note we saw the endocrinologist a second time (at the same time as we visited with the behavioral specialist the first time) and we finally received the results of Kennan's bone x-ray. He is measuring as if he was an eleven year old instead of an eight year old. We have to go back and see her again in either September or October. If at that point his growth patterns are still way ahead of his age then they will make some decisions on medication possibilities. The fun never ends!!
Tuesday, May 1, 2012
Positively Georgia: Service Dogs- The original FASD dog.
Positively Georgia: Service Dogs: Tracye recently met a service dog who has made a huge difference for a Roswell family. That's today's Positively Georgia.
Click on the title to see a local interview with the family who owns the first FASD service dog. (sorry about the commercial before the video starts).
Click on the title to see a local interview with the family who owns the first FASD service dog. (sorry about the commercial before the video starts).
Tuesday, April 24, 2012
What is FAE?
When we took Kennan to see the behavioral specialist he told us that we were devefinently seeing some FAE. Now in the grand scheme of FASD the acronym FAE is becoming obsolete and being used less and less. In newer terms these children will often be listed as having ARND. Just a new way of saying that the child is living with the consequence of being prenatally exposed to alcohol. However, there are people out there who still use it. So what is FAE?
Definition: Fetal Alcohol Effects (FAE) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAE are not as obviously impaired as children diagnosed with Fetal Alcohol Syndrome (FAS) -- they usually lack the distinctive FAS facial features and have normal IQs -- and so FAE is sometimes described as less serious. Sadly, however, children with FAE are in fact more likely to have negative outcomes such as trouble with school, trouble with the law and teen pregnancy; the fact that they look "normal" but can't behave that way due to brain damage causes them to face unrealistic expectations without appropriate support, which can have serious repercussions for these children and their families. The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Alcohol-Related Neurodevelopmental Disorder (ARND) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb.
Definition: Fetal Alcohol Syndrome (FAS) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAS have distinctive facial features that identify them as having alcohol-related damage, including a small head, flat philtrum, droopy eyelids, flat nose, and a face that looks a little bit too big for the head. Children with FAS may also have low IQs, but not always. Individuals who have been exposed to alcohol prenatally and have fetal-alcohol-related behaviors but not the facial features may be described as having Fetal Alcohol Effects (FAE) or Alcohol-Related Neurodevelopmental Disorder (ARND). The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Fetal Alcohol Spectrum Disorder (FASD) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb. A number of factors, including how much the mother drank and at what point during the pregnancy, can influence the severity of the impairments and what functions they most affect. Children with FASD can display symptoms of ADHD, autism, Asperger syndrome, Tourette's syndrome, epilepsy, mental retardation and various psychiatric disorders, but will often not respond to traditional treatments for those disabilities.
FASD was formerly referred to as Fetal Alcohol Syndrome and Fetal Alcohol Effects, but the new designation better indicates the range of abilities and disabilities experienced by individuals exposed to alcohol in utero.
Also Known As: Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Disorder, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure.
Alternate Spellings: Foetal Alcohol Syndrome, Foetal Alcohol Effects, Foetal Alcohol Spectrum Disorder.
So at this point the Geneticist is saying most likely FAS and the behavioral specialist is saying FAE. Who's right - they both are.
Either way he has disabilities caused by the prenatal exposure to acohol. On a practical note we would like to see the diagnosis of FAS because it is the one that will allow him to have access to greater services.
Definition: Fetal Alcohol Effects (FAE) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAE are not as obviously impaired as children diagnosed with Fetal Alcohol Syndrome (FAS) -- they usually lack the distinctive FAS facial features and have normal IQs -- and so FAE is sometimes described as less serious. Sadly, however, children with FAE are in fact more likely to have negative outcomes such as trouble with school, trouble with the law and teen pregnancy; the fact that they look "normal" but can't behave that way due to brain damage causes them to face unrealistic expectations without appropriate support, which can have serious repercussions for these children and their families. The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Alcohol-Related Neurodevelopmental Disorder (ARND) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb.
Also Known As: Fetal Alcohol Spectrum Disorder, Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Delays, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure
Definition: Fetal Alcohol Syndrome (FAS) is one of a spectrum of neurological impairments that can affect a child who has been exposed to alcohol in the womb. Children with FAS have distinctive facial features that identify them as having alcohol-related damage, including a small head, flat philtrum, droopy eyelids, flat nose, and a face that looks a little bit too big for the head. Children with FAS may also have low IQs, but not always. Individuals who have been exposed to alcohol prenatally and have fetal-alcohol-related behaviors but not the facial features may be described as having Fetal Alcohol Effects (FAE) or Alcohol-Related Neurodevelopmental Disorder (ARND). The term Fetal Alcohol Spectrum Disorder (FASD) is being used more and more to stress the fact that there are a variety of ways in which alcohol can affect a developing child and no particular set of impairments is "better" or "worse."
Definition: Fetal Alcohol Spectrum Disorder (FASD) refers to the range of neurological impairments that can affect a child who has been exposed to alcohol in the womb. A number of factors, including how much the mother drank and at what point during the pregnancy, can influence the severity of the impairments and what functions they most affect. Children with FASD can display symptoms of ADHD, autism, Asperger syndrome, Tourette's syndrome, epilepsy, mental retardation and various psychiatric disorders, but will often not respond to traditional treatments for those disabilities.
FASD was formerly referred to as Fetal Alcohol Syndrome and Fetal Alcohol Effects, but the new designation better indicates the range of abilities and disabilities experienced by individuals exposed to alcohol in utero.
Also Known As: Fetal Alcohol Syndrome, Fetal Alcohol Effects, Alcohol Related Neurodevelopmental Disorder, Partial Fetal Alcohol Syndrome, prenatal alcohol exposure.
Alternate Spellings: Foetal Alcohol Syndrome, Foetal Alcohol Effects, Foetal Alcohol Spectrum Disorder.
So at this point the Geneticist is saying most likely FAS and the behavioral specialist is saying FAE. Who's right - they both are.
Either way he has disabilities caused by the prenatal exposure to acohol. On a practical note we would like to see the diagnosis of FAS because it is the one that will allow him to have access to greater services.
Monday, April 23, 2012
Bissell Centre FASD Music Video
I realize that for many people this isn't your style of music. But for Kennan and hundreds like him I want to spread the message their is no safe level of alcohol when you are pregnant!!
Thursday, April 19, 2012
Thank - You !!!!
We just wanted to send out a great big Thank- You to all our friends and family in Utah that participated in the Chick-fil-a fundraiser on behalf Kennan. We appreciate all your support and hope you will pass along our thanks to all of those who you know (that we don't) who came to support our efforts to get Kennan his service dog. I don't have a complete total yet - but with the numbers we do know you added ~ $225.00 towards Kennan's dog. Which puts our total at about $2,187.00. We are moving those numbers up!! Thank - you to all of you once again. :)
Monday, April 16, 2012
Subscribe to:
Posts (Atom)