I thought I would give a Background for those who don't know it. It is on Ashleigh's website, but I thought it would be easier for me to do it here & it will be a lot shorter, too.
Our journey started in 2002 with a Child Development doctor, who told us Ash was delayed & her white matter was abnormal. We later found out that she has PVL (PeriVentricular Leukomalacia) in 2006. At this time, Ash was 18 months old. Ash started receiving PT, development therapy & then speech once Ash knew objects. This was all done in our home. At this time, Ash did not talk or walk. At 25 months old, Ash walked, but with the help of her physical therapist. Ash had to be taught how to walk, to climb, how to climb up stairs, etc.
In 2003, we saw a geneticist & got the diagnosis of demyelination. Ashleigh started preschool where all of her therapy was at. PT, OT, & speech.
In 2004, Ash continued her same preschool. Welcome her baby brother! She sprained her hip/leg/ankle & could not do anything for a week or 2 if I am remembering correcting. I had her I think in swimming at that time or was that another time when she sprained her ankle.
In 2005, Ash had an EMG done. That test was awful for her. It hurt. We found out that her brain was not sending the signals to her muscles, which is the problem. Ash had a skin biopsy to out rule mitochondrial disease, which she does not have.
I will never forget 2006 for Ashleigh. Mainly November 2006. This is when Ash started having major leg pains. So badly that she would SCREAM in pain so loudly that you would stop everything. You never it was nothing. We were told they were growing pains. No they were not. I fought very hard to get the doctors to see they were not growing pains. I won! Her pediatrician told me to give her Tylenol for the pain. A neurologist finally listened to me!! Ash started a new medication for her pain. Ash started to have behavior issues in 2006, too.
We were told good news in 2006. Ash's speech is normal. Finally something is not delayed!! Ash started horseback riding this year, too (July)! Ashleigh got a new diagnosis from her rheumatogist of Benign Hypermobility Joint Syndrome.
On July 28, 2007, we got the diagnosis of Spastic Paraparesis for Ashleigh. This is her main diagnosis.
In July 2008, Ash had a bone scan. I could not be in the room with her since I was pregnant with Ethan. I stayed outside at these chairs with Noah coloring, playing games, etc with Noah. Shawn was with Ash. In November 2008, Ash was diagnosed with Destructive Behavioral Disorder. This was such good news to hear. Ash was tearing up books, etc. We got her into the wrap around program where we have therapists in our home helping her. We think she is not handling her pain, her disease, & everything else her life.
Ashleigh started the wrap around program with her therapists in our home. We had 3 therapists in our home: BSC, TSS, & MT. For what these mean, go HERE. Scroll down to Jan 13, 2009 to find the information. Thanks.
August 2010 Back pain started & left arm pain started first in September 2010 then a month later in her right arm. MRI's were done on her Spine & Brain. Brain was fine, but the Spine showed a bulging disc on L4-L5. Balance issues has been getting worse lately. We were told to call her neurologist if Ash was still in pain. I called in a week. We were referred to the Diagnostic Referral Service. Ash was diagnosed with Joint Hypermobility Syndrome (JHS).
Ashleigh was diagnosed with Depression in May 2011. In November 2011, we started to noticed that Ashleigh's left leg started to drag a little. Her neurologist said that her disease is getting a little worse. Her pain management agrees with this. I will be sharing the symptoms of Teen Depression. I think it is really important for us parents to know the symptoms.
During these years (2002-2011), Ash saw her regular doctors (rheumatogist, rehab dr=CP Clinic), neurologist) twice a year, but I did not say anything above unless something was found. At times, Ash saw an ortho doctor, too, since she was spraining her hip/leg/ankle.
I am going to do a Part 2 for this & have 2012 on a separate post. I have not put 2012 on Ashleigh's website yet. I am so behind. Sorry this is a bit behind, but with Christmas, there was so much for me to do. My back pain has gotten worse, but I am dealing with it one day at a time.
Melissa
Our journey started in 2002 with a Child Development doctor, who told us Ash was delayed & her white matter was abnormal. We later found out that she has PVL (PeriVentricular Leukomalacia) in 2006. At this time, Ash was 18 months old. Ash started receiving PT, development therapy & then speech once Ash knew objects. This was all done in our home. At this time, Ash did not talk or walk. At 25 months old, Ash walked, but with the help of her physical therapist. Ash had to be taught how to walk, to climb, how to climb up stairs, etc.
In 2003, we saw a geneticist & got the diagnosis of demyelination. Ashleigh started preschool where all of her therapy was at. PT, OT, & speech.
In 2004, Ash continued her same preschool. Welcome her baby brother! She sprained her hip/leg/ankle & could not do anything for a week or 2 if I am remembering correcting. I had her I think in swimming at that time or was that another time when she sprained her ankle.
In 2005, Ash had an EMG done. That test was awful for her. It hurt. We found out that her brain was not sending the signals to her muscles, which is the problem. Ash had a skin biopsy to out rule mitochondrial disease, which she does not have.
I will never forget 2006 for Ashleigh. Mainly November 2006. This is when Ash started having major leg pains. So badly that she would SCREAM in pain so loudly that you would stop everything. You never it was nothing. We were told they were growing pains. No they were not. I fought very hard to get the doctors to see they were not growing pains. I won! Her pediatrician told me to give her Tylenol for the pain. A neurologist finally listened to me!! Ash started a new medication for her pain. Ash started to have behavior issues in 2006, too.
We were told good news in 2006. Ash's speech is normal. Finally something is not delayed!! Ash started horseback riding this year, too (July)! Ashleigh got a new diagnosis from her rheumatogist of Benign Hypermobility Joint Syndrome.
On July 28, 2007, we got the diagnosis of Spastic Paraparesis for Ashleigh. This is her main diagnosis.
In July 2008, Ash had a bone scan. I could not be in the room with her since I was pregnant with Ethan. I stayed outside at these chairs with Noah coloring, playing games, etc with Noah. Shawn was with Ash. In November 2008, Ash was diagnosed with Destructive Behavioral Disorder. This was such good news to hear. Ash was tearing up books, etc. We got her into the wrap around program where we have therapists in our home helping her. We think she is not handling her pain, her disease, & everything else her life.
Ashleigh started the wrap around program with her therapists in our home. We had 3 therapists in our home: BSC, TSS, & MT. For what these mean, go HERE. Scroll down to Jan 13, 2009 to find the information. Thanks.
August 2010 Back pain started & left arm pain started first in September 2010 then a month later in her right arm. MRI's were done on her Spine & Brain. Brain was fine, but the Spine showed a bulging disc on L4-L5. Balance issues has been getting worse lately. We were told to call her neurologist if Ash was still in pain. I called in a week. We were referred to the Diagnostic Referral Service. Ash was diagnosed with Joint Hypermobility Syndrome (JHS).
Ashleigh was diagnosed with Depression in May 2011. In November 2011, we started to noticed that Ashleigh's left leg started to drag a little. Her neurologist said that her disease is getting a little worse. Her pain management agrees with this. I will be sharing the symptoms of Teen Depression. I think it is really important for us parents to know the symptoms.
During these years (2002-2011), Ash saw her regular doctors (rheumatogist, rehab dr=CP Clinic), neurologist) twice a year, but I did not say anything above unless something was found. At times, Ash saw an ortho doctor, too, since she was spraining her hip/leg/ankle.
I am going to do a Part 2 for this & have 2012 on a separate post. I have not put 2012 on Ashleigh's website yet. I am so behind. Sorry this is a bit behind, but with Christmas, there was so much for me to do. My back pain has gotten worse, but I am dealing with it one day at a time.
Melissa
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