Saturday, September 8, 2012
Rough patch...time for some blogging therapy!
I haven't been wanting to write this post. I just loved being able to be so positive about Dray and I was loving that feeling and have not wanted it to end!! But...it has...and I have had some rough days and today was a low point for me.
Where to start...so, back in June we did an EEG. I was so relaxed about it and felt like Dray had been making such great progress. Dr. Chez's assistant called with the results and I was completely unprepared to hear that there were seizure spikes again. After almost TWO YEARS of seizure free!! I could NOT even bear to hear it. I was pretty much a mess and immediately emailed Dr. Chez with my questions and concerns. Being the attentive doctor that he is, he responded back quickly, and reassured me that this wasn't what we saw in the past. I had in appointment set in August for us to see him, so we would change his meds and see how an EEG looked in August. Here I was just yesterday thinking that I would be able to take my son off all his medications (which you need to have a 7 year old with at least 7 different pills and liquids to take twice a day to appreciate what I'm saying), and now we are adding MORE! Plus, the worst part, that this will continue to hang over us, and we are NOT out of the woods with LKS. We are still very much fighting this battle.
So, I'll cut to the chase. We went to our appointment and Dr. Chez did an EEG in his office. Dray was NOT asleep, but he still wanted to see and compare EEG's from his last. He said that he sees what he called, a benign seizure spike in the right temporal lobe. So, benign...should be fine? We don't know for sure. More EEG's to keep an eye on it. It could turn into something more than benign. What you are looking for is the spike and wave pattern that is almost constant during their sleep. Which he isn't seeing, so that part is good.
So, back to today. The past few weeks Dray's personality has taken a different course. He is such a personable and social little guy. But, lately he has been much more withdrawn and stays to himself. He seems to understand okay, but his sentence structure has been terrible lately. A lot of times I have a hard time understanding him. But, the worst is his behaviors. He is very irritable and extremely frustrated. He instantly is frustrated and that instantly turns right into yelling and hitting. Especially in the mornings. Why mornings? He's not a morning person, but his behavior in the morning goes way beyond not being a morning person. He is just mean...and what I find most irritating is unresponsive. So, this morning he was supposed to go play soccer. Which is NOT a good sport for him. Too much happening at one time and Dray's reaction time to the world around him is typically a few seconds off from the normal child. Okay....sometimes more than just a few seconds. But, he was playing on the same team as his sister, Kate. Kate is a go getter and really focused. This was frustrating for Dray. He did NOT like her to be better or to have the ball and he not have the ball. He spent the game pushing her and hitting her. Todd took him right out. Which lead to him hitting and screaming. Him getting into trouble is only the beginning...everything escalates after that. EVERYTHING!! He has zero control over his anger. He was in so much trouble. He can be angry, embarrassed, sad, shy and it doesn't matter any feelings he can't deal with or cannot find a way to vent...it ends with hitting and/or screaming.
This is difficult for me to watch because I know how frustrated he must be. Having a brain that just doesn't connect with anything else in your body and not being able to articulate and explain what you are feeling...I DO feel for him. But, as a parent you know you have to help him articulate and vent in an appropriate way. I just haven't exactly figured that part out yet...any suggestions out there? I'm wide open for help on this. These episodes happen almost daily and it is tiring!! So, then I was cleaning and came across his test results from last May from the school district's speech pathologist. Those scores depressed me...he scored so low still. I feel like even with tons of progress we are still just chipping away at a huge problem. He is still so far behind and it feels like we are basically where we started some days because he just lags behind so much. I want to scream!! I honestly don't know what more I can do. Also, being SO far behind in language, when do you catch up? Or, at least get to a point where people don't notice your handicap? It feels insurmountable right now and I'm really having a hard time accepting that he may possible never have normal speech. I know it won't happen over night, but it feels like it he is so far away it may never happen.
I'm really using this post as therapy and venting. It's been a challenging few months for me. I usually stay pretty calm and look at the facts and logically think things through. But, this whole LKS thing really brings out some serious anxiety, and quite frankly, scares me to death. To have a son that is SO close to being normal in so many ways. But, in that same breath of saying that...he still has mountains to overcome for his future. He looks like a normal boy and makes faces and in most situations behaves like a normal kid. But, he is handicapped. He is academically impaired, socially awkward, physically uncoordinated, and completely unfocused. He acts more like a 5 year old than a 7 year old. All of this and he has moments of maturity, brilliance, keen intellect, and can be so fun and the life of the party. Which part of him will win over in the end? The unknown sends me into a whirlwind of emotions and today the fear has won me over. All of the worst possible scenarios come to my mind and it makes me sick for my sweet little guy that started just like any other child. I keep a lot of baby pictures of him around because I long for those days back when his life held such hope and promise for a great future. Not even anything spectacular...just a normal life. Normal. I know is subjective, but for me it has taken on a new meaning. It really is nothing spectacular...normal means friends, socializing,having a talent that comes easier to you, doing good in some subjects and struggling with others, but being capable of overcoming, going to college, getting a job or trade, and having a family. Are these things possible for Dray? I work and push everyday so that these things can be his and will be possible to attain. Feels like I'm trying to move a mountain some days...I'm exhausted!!!
I'm done venting and I love my boy...that's it. In the end, that really is it. So, the rest I put in God's hands and have faith that he will guide me as a parent and help my little boy to overcome. So, excuse my rambling because I have to do it some times to get through this!! Thank you for allowing me that :)
Where to start...so, back in June we did an EEG. I was so relaxed about it and felt like Dray had been making such great progress. Dr. Chez's assistant called with the results and I was completely unprepared to hear that there were seizure spikes again. After almost TWO YEARS of seizure free!! I could NOT even bear to hear it. I was pretty much a mess and immediately emailed Dr. Chez with my questions and concerns. Being the attentive doctor that he is, he responded back quickly, and reassured me that this wasn't what we saw in the past. I had in appointment set in August for us to see him, so we would change his meds and see how an EEG looked in August. Here I was just yesterday thinking that I would be able to take my son off all his medications (which you need to have a 7 year old with at least 7 different pills and liquids to take twice a day to appreciate what I'm saying), and now we are adding MORE! Plus, the worst part, that this will continue to hang over us, and we are NOT out of the woods with LKS. We are still very much fighting this battle.
So, I'll cut to the chase. We went to our appointment and Dr. Chez did an EEG in his office. Dray was NOT asleep, but he still wanted to see and compare EEG's from his last. He said that he sees what he called, a benign seizure spike in the right temporal lobe. So, benign...should be fine? We don't know for sure. More EEG's to keep an eye on it. It could turn into something more than benign. What you are looking for is the spike and wave pattern that is almost constant during their sleep. Which he isn't seeing, so that part is good.
So, back to today. The past few weeks Dray's personality has taken a different course. He is such a personable and social little guy. But, lately he has been much more withdrawn and stays to himself. He seems to understand okay, but his sentence structure has been terrible lately. A lot of times I have a hard time understanding him. But, the worst is his behaviors. He is very irritable and extremely frustrated. He instantly is frustrated and that instantly turns right into yelling and hitting. Especially in the mornings. Why mornings? He's not a morning person, but his behavior in the morning goes way beyond not being a morning person. He is just mean...and what I find most irritating is unresponsive. So, this morning he was supposed to go play soccer. Which is NOT a good sport for him. Too much happening at one time and Dray's reaction time to the world around him is typically a few seconds off from the normal child. Okay....sometimes more than just a few seconds. But, he was playing on the same team as his sister, Kate. Kate is a go getter and really focused. This was frustrating for Dray. He did NOT like her to be better or to have the ball and he not have the ball. He spent the game pushing her and hitting her. Todd took him right out. Which lead to him hitting and screaming. Him getting into trouble is only the beginning...everything escalates after that. EVERYTHING!! He has zero control over his anger. He was in so much trouble. He can be angry, embarrassed, sad, shy and it doesn't matter any feelings he can't deal with or cannot find a way to vent...it ends with hitting and/or screaming.
This is difficult for me to watch because I know how frustrated he must be. Having a brain that just doesn't connect with anything else in your body and not being able to articulate and explain what you are feeling...I DO feel for him. But, as a parent you know you have to help him articulate and vent in an appropriate way. I just haven't exactly figured that part out yet...any suggestions out there? I'm wide open for help on this. These episodes happen almost daily and it is tiring!! So, then I was cleaning and came across his test results from last May from the school district's speech pathologist. Those scores depressed me...he scored so low still. I feel like even with tons of progress we are still just chipping away at a huge problem. He is still so far behind and it feels like we are basically where we started some days because he just lags behind so much. I want to scream!! I honestly don't know what more I can do. Also, being SO far behind in language, when do you catch up? Or, at least get to a point where people don't notice your handicap? It feels insurmountable right now and I'm really having a hard time accepting that he may possible never have normal speech. I know it won't happen over night, but it feels like it he is so far away it may never happen.
I'm really using this post as therapy and venting. It's been a challenging few months for me. I usually stay pretty calm and look at the facts and logically think things through. But, this whole LKS thing really brings out some serious anxiety, and quite frankly, scares me to death. To have a son that is SO close to being normal in so many ways. But, in that same breath of saying that...he still has mountains to overcome for his future. He looks like a normal boy and makes faces and in most situations behaves like a normal kid. But, he is handicapped. He is academically impaired, socially awkward, physically uncoordinated, and completely unfocused. He acts more like a 5 year old than a 7 year old. All of this and he has moments of maturity, brilliance, keen intellect, and can be so fun and the life of the party. Which part of him will win over in the end? The unknown sends me into a whirlwind of emotions and today the fear has won me over. All of the worst possible scenarios come to my mind and it makes me sick for my sweet little guy that started just like any other child. I keep a lot of baby pictures of him around because I long for those days back when his life held such hope and promise for a great future. Not even anything spectacular...just a normal life. Normal. I know is subjective, but for me it has taken on a new meaning. It really is nothing spectacular...normal means friends, socializing,having a talent that comes easier to you, doing good in some subjects and struggling with others, but being capable of overcoming, going to college, getting a job or trade, and having a family. Are these things possible for Dray? I work and push everyday so that these things can be his and will be possible to attain. Feels like I'm trying to move a mountain some days...I'm exhausted!!!
I'm done venting and I love my boy...that's it. In the end, that really is it. So, the rest I put in God's hands and have faith that he will guide me as a parent and help my little boy to overcome. So, excuse my rambling because I have to do it some times to get through this!! Thank you for allowing me that :)
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I weep for you and Dray, and your girls, and your family and friends but mostly I weep because it's like you've been watching our life and just wrote our book.... Our pages are the same it seems. I would never wish this on any one. The hardest seems to be the lack of compassion some people have because the boys look so normal! I always tell them Id hate to see what it would look like if they wore there disabilities on the outside. The worse is my mother in law! If you ever want to email back and forth
ReplyDeletemy email is heatherdcham@gmail.com
I was wondering if you could help me. My son AJ just turned 5 this June. He has seizures,and since about 3 1/2-4 he started losing his speech. Our Neuro doc believes that he has Landua-Kleffner. If you could give me any help my email is jkilcline80@gmail.com. Thanks so much!!!!
ReplyDeleteVisit a pediatric neurologist and have an EEG performed. Those symptoms plus an abnormal EEG is the predominant test for diagnosis of LKS. Children's hospital in Boston Neurology Department handles LKS.
DeleteMy heart is heavy, but I know that there couldn't be 2 better parents than the ones Dray has to help him through these struggles. As you say, just love him...and pray for continual guidance and strength! Love you!
ReplyDeleteDear Kerri, I hope you don't mind a stranger responding to your blog. I am a friend of the Deshlers and I have learned to love you and your family and little Dray over the past many many months. I am a therapist and can tell you that any time they add more medications the human body rebels and it often comes out as the type of behavior you describe. It's like a war going on inside his lttle body (by the way he looks so great compared to where he was before weight wise). I know you had to be touched by the last General Conference and the story of the handicapped boy. I can honestly say that you must be AMAZING parents to be blessed with such a child. It's like the Lord hand picks the parents of these special children. Blaine Yorgason is a dear friend of mine and if you have read "The Tattered Angel" you know what they went through. I met that sweet angel and that is who you have in your home...an angel from Heaven! Please hang in there and know that there are many praying for you every single day. We all wish we knew all the answers but even the Prophets wonder why certain things happen in their lives. Just hold him and cuddle him and read to him and keep praying. Like Alma sometimes that is all we can do! But know you are NOT alone and this too will pass. Many love you and your sweet family. Love Dr. Judy Smith
ReplyDeleteThank you for your kind words and I needed to read that today. I truly appreciate the prayers in his behalf...I know we can't do this alone! It is always good to stay focused on what truly matters and how special he is! I will be reading the book you mentioned :)
DeleteHi There, reading your blog was very touching and inspiring. I have a 9 y.o. daughter who was diagnosed at age 4 1/2 after regressing at age 2+. She has done the prednisone therapy, but the side effects were so rough on her that we decided not to go any further after being on it for about 6 months or so. I now wish we would ahve continued longer. We live abroad (outside of the US) and are 1 of 3 known cases in our country. Most people think she is autistic, given the similarities in the symptoms. I would like to visit Dr. Chez and note in your blog that he is in Sacremento CA. Do you know if he has any other locations, or are you able to share his direct office phone contact please. I am very interested in having our daughter assessed by him. she is still on antiepileptics, and sees a neuro, but I have been searching for a neuro with a specialty in LKS.
ReplyDeleteotherwise, thanks so much for sharing. It is so good to hear someone who has experienced a lot of what we experience daily. Be encouraged.
Children's Hospital Boston Neurologist David Coulter is whom we use. Our son has LKS.
DeleteI will give you his office phone number. That's really all I have, unfortunately!! Please email me at kerrideshler@yahoo.com if you are interested in that number. I pray that you will find the doctor and care that your daughter needs. Having the right doctor is so very critical to being on a road to recovery!
ReplyDelete