I was listening to the radio this morning and found myself enthralled in this story: .
Of course I am amazed at all things medical so it should come as no surprise, but now I look at it from a parent standpoint. Not just that though, a parent whose child has a genetic mutation. I think the thing that strikes me the most about this report (and feel free to listen to it and form your own opinion), is that this procedure is actually changing the DNA for years and years and generations and generations. I am not under any illusion that any of this science will help Daniel or even make any difference whatsoever in his life, but I wonder about other mothers. Mothers-to-be or grandparents. This is something that could change the face of medicine completely and forever.
In truth, I actually have a lot of resentment towards whatever/whoever/however my son had this genetic mutation. I cannot say for sure that it was a "being" of any sort, but what made Daniel the way he is, I still hate with every part of me. No, I don't hate my son and I love my son very very dearly, but I do not like the fact that he got a raw deal. I hope that future medicine will provide the answers for parents to be able to take away any pain or suffering or a chance for a child to have a normal life. I know there are those that say, "what doesn't kill you makes you stronger," but honestly no child should have to have a life-changing/life-threatening disease in order to prove their strength and no parent should have to go through it either.
Friday, August 18, 2017
Sunday, February 12, 2017
Mystery solved...for now
These posts get fewer and farther between since we have a ton of stuff going on, as I am sure all of you do. It is difficult to even catch your breath at times. One kiddo is getting ready to leave middle school and the other is getting ready to enter middle school so you can imagine the crazy schedules. Add to that both mom and dad working most days of the week with at least a half hour commute then you have very little time to take a break. However, since I am in a lull for a few minutes, I wanted to update you all very briefly.
So, the world changed with the election and this blog is not about politics so we will skip that part. Daniel has been doing okay. I say okay because that is a pretty accurate description. He continues to take medication for both sleep and for behavior. His behavior is hit or miss (no pun intended). The medication (Ritalin) doesn't really work on the behavior so much as Daniel's ability to get "stuck" on a subject. Daniel's hitting and kicking comes and goes depending on a few things: is he off his regular schedule? (Daniel needs to have a regular schedule); is he bored?; is he tired?; is it a new situation?, is it a transition? So you can see why we are walking on eggshells sometimes. We have gotten some training on how to be more proactive-to predict when these behaviors are going to happen and to not just react to them. They have somewhat gotten better but that is all relative. The Ritalin may be helping, but sometimes we cannot be sure.
One thing the medication is doing is causing Daniel to lose weight/have a decreased appetite. Now, if you know my son, then you know he LOVES to eat and will eat anything. So (crazy as it sounds) we met with a nutritionist who gave us some pointers on how to increase his calories. We started right away--high calorie chocolate milk-check, adding more cheese to his eggs-check. We were going along okay until one day 3 weeks ago Daniel vomited. He woke up and was shivering and then vomited. I know I have talked about this before, but Daniel cannot tell us what is wrong. I don't know if he cannot feel pain or if he just doesn't know how to say he is in pain. When he vomits, he gets really scared (or pain) and he will lash out. Anyway, three weeks ago for the whole day he ate nothing. Then was perfectly fine. Then 2 weeks ago the same thing happened and he didn't eat for a whole day and then was fine. Then 1 week ago and then today. No other symptoms or fever. He talks and acts normal, but no eating--in a kid who cannot afford to do that! My husband took him to the doctor because (of course) I was at work. Texting Jason with all kinds of my own diagnoses. Then it hit me, Daniel could be having acid reflux.
When he was younger, he would sometimes wake in the middle of the night screaming and was in pain (at least we could tell). The only thing that helped was antacid. When he was a baby he was diagnosed with it for his hypotonia and he was given medication (the medication at that time did more harm than good). I am not sure why we stopped checking into it. He has never been able to burp on his own and I don't really know if there were other symptoms, but we just didn't think of it after a while. It makes sense though and this is what the doctor thought as well. The doctor actually thinks it could also be a virus mixed with the reflux but reflux nonetheless. I feel like such a bad mom. How could I have dropped the ball and not even followed up on his history of reflux? How did I let it go for almost a month without thinking it was reflux?
He is now taking an over-the-counter probiotic and has a prescription for anti-nausea and we need to change his diet. This means no chocolate milk or tomato sauce products or any spicy foods. So now we need to make sure he gets enough calories without having some foods that he really likes. If it happens again then we will need to try medication. Life goes on.
So, the world changed with the election and this blog is not about politics so we will skip that part. Daniel has been doing okay. I say okay because that is a pretty accurate description. He continues to take medication for both sleep and for behavior. His behavior is hit or miss (no pun intended). The medication (Ritalin) doesn't really work on the behavior so much as Daniel's ability to get "stuck" on a subject. Daniel's hitting and kicking comes and goes depending on a few things: is he off his regular schedule? (Daniel needs to have a regular schedule); is he bored?; is he tired?; is it a new situation?, is it a transition? So you can see why we are walking on eggshells sometimes. We have gotten some training on how to be more proactive-to predict when these behaviors are going to happen and to not just react to them. They have somewhat gotten better but that is all relative. The Ritalin may be helping, but sometimes we cannot be sure.
One thing the medication is doing is causing Daniel to lose weight/have a decreased appetite. Now, if you know my son, then you know he LOVES to eat and will eat anything. So (crazy as it sounds) we met with a nutritionist who gave us some pointers on how to increase his calories. We started right away--high calorie chocolate milk-check, adding more cheese to his eggs-check. We were going along okay until one day 3 weeks ago Daniel vomited. He woke up and was shivering and then vomited. I know I have talked about this before, but Daniel cannot tell us what is wrong. I don't know if he cannot feel pain or if he just doesn't know how to say he is in pain. When he vomits, he gets really scared (or pain) and he will lash out. Anyway, three weeks ago for the whole day he ate nothing. Then was perfectly fine. Then 2 weeks ago the same thing happened and he didn't eat for a whole day and then was fine. Then 1 week ago and then today. No other symptoms or fever. He talks and acts normal, but no eating--in a kid who cannot afford to do that! My husband took him to the doctor because (of course) I was at work. Texting Jason with all kinds of my own diagnoses. Then it hit me, Daniel could be having acid reflux.
When he was younger, he would sometimes wake in the middle of the night screaming and was in pain (at least we could tell). The only thing that helped was antacid. When he was a baby he was diagnosed with it for his hypotonia and he was given medication (the medication at that time did more harm than good). I am not sure why we stopped checking into it. He has never been able to burp on his own and I don't really know if there were other symptoms, but we just didn't think of it after a while. It makes sense though and this is what the doctor thought as well. The doctor actually thinks it could also be a virus mixed with the reflux but reflux nonetheless. I feel like such a bad mom. How could I have dropped the ball and not even followed up on his history of reflux? How did I let it go for almost a month without thinking it was reflux?
He is now taking an over-the-counter probiotic and has a prescription for anti-nausea and we need to change his diet. This means no chocolate milk or tomato sauce products or any spicy foods. So now we need to make sure he gets enough calories without having some foods that he really likes. If it happens again then we will need to try medication. Life goes on.
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