WorriedMom
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Honestly Im looking for some help here, I have no idea what is going on with my son, I dont know if anyone else has had these symptoms or experienced what he is going through. I feel like a horrible mom I want to throw my hands up and QUIT today. Im miserable and all i want to do is cry.. how utterly selfish of me ! Look at what my little man is going through and I cant seem to get off my self pity high horse, Here is what is going on with him and a recount of this morning, Help me help me , HELP ME before i am stuck wearing a little white coat ! I think Im about to crack..
I am not in the mood to be a parent today, although there really isn’t much that I can do about it either. This has just been one of those weeks for me. I’m upset that I was late to work again this morning.
Since December Ryan has been having a new type of seizure, His arms flap like a bird trying to fly only its not that rapid, his shoulders are shrugging very quickly, his eyes are blinking really fast and rolling back into his head, he normally looses his bladder control, and seems so disoriented. He is unable to dress himself, or even remove his clothing, he cant follow the simplest of directions. It was happening once or twice a month since December , until Febuary when it became much more frequent to 3 times a week for a week then back to normal . Then comes March and its off and on again. Weeks would pass with none of these new symptoms ( seizures)
Which brings us to April, Today is Friday and out of these 5 days of the week so far 4 days have been these weird ass seizures. I try to give him meds as quickly as possible, to try to get his blood levels back up in case it’s the meds that have dropped while he has been sleeping. These weird seizures ONLY HAPPEN IN THE MORNING !!!!! I thought that it was because he was overly tired at first , but now I don’t think that is it at all. Im so frustrated I could scream and rip all my hair out, I want to cry and throw a tantrum.
This morning was "wonderful " in the sarcastic sense that I wasn’t able to get Ryan motivated enough to get moving, and when he finally did get moving he was in his La La land little world. I told him to get his meds because I noticed his seizures on a rampage this morning, He stood there in the middle of his bedroom not moving one inch , just staring at nothing , seemed like he didn’t even hear a word I said to him at all, I told him again to go get his pills , I had to take him by his arm and pull him into the kitchen
He stood at the kitchen sink just staring into the air , then he did this washing of his hands motion , but the water wasn’t even on ! I tell him to get a glass from the cabinet and he walks over to the cabinet that we keep the medications in , and just stands there, I grab him and pull him over to the cabinet that the glasses are kept in and he just stared at me, I was SO SO FRUSTARATAED ! I hand him a glass and tell him to get his water from the fridge so he can take his pills, he walks over to the fridge and pushes the water button with his glass, only his glass is UPSIDE down so water gushes all over the floor and all over him ! I grabbed the glass and filled it with some water and told him to take his pills from my hand, he still just stood there. I told him to open his mouth and take the pills he didn’t move. I had to grab his face and force his mouth open, I dropped the pills into his mouth and he still just stood there, I literally had to take the glass of water and pour it into his mouth and tell him to swallow his pills. He did finally swallow his pills , and he kept trying to get past me to get out of the kitchen , I have no idea where he was trying to go, so I take him back to his room and tell him he needs to get dressed, that I have to get them to school and to work.
I go into the bathroom to try and get myself ready, Madisson is getting dressed in her room , as Im blow drying my hair, I look across the hall and see Ryan just standing there with a blank expression on his face, still seizing. I put down what I am doing and walk back into his room. I ask him to please get his shirt on that we need to get moving that I don’t want to be late. He doesn’t reply to me at all, just stands there. So I pick up his shirt and sit him on his bed, lay the shirt on his lap and ask him again to put it on, and I walk back out of his room. 10 minutes later he still isn’t dressed he is just wandering aimlessly around his room.
I tell him " Ryan COME ON PLEASE !" " Get Your shirt off the floor and put it on " he walks over to his bed and trys to pick up his pillow, I said " Ryan are you kidding me ? Did you hear me tell you to get your shirt ? " he still stands there , he wont even look at me.
I don’t know if he couldn’t or he just didn’t want to. So he finally walks over to where his shirt lay on the floor and grabs a pair of his shorts instead, and attempts to put the shorts on like a shirt . I grab the shorts from him and hand him the shirt and he stands there still ! So I take the shirt and pull it over his head for him and tell him to put his arms in , he stands there like a statue. So I push his arms through, grab his shoes and tell him to go sit down on the couch and just sit there and wait for me and Maddy.
I throw myself together literally and run out of the bathroom , the clock said it was 7:35 and I had to have them at school in 5 minutes and they hadn’t even eaten yet !!! Ryan starts yelling some jibberish at Maddy about how his socks were on and you hear Maddy telling him " No Ryan you need socks on both feet before you try to put your shoes on " He yells back some jibberish that isn’t even coherent in the least. Mostly mumbles.
So again I go out there and attempt to quiet the situation, I tell Maddy thank you , and just to get herself ready that I appreciate her help but Ill handle the rest with him. I put his shoes on his feet and FINALLY we are ready to run out the door. I run to the coffee hut to grab a muffin for them and a coffee for me , and he is still talking this jibberish language and having these seizures.
I know that I should try to be more understanding and caring about this, he cant help it , I feel like a bad mother and a horrible person to get mad and frustrated with him about it. I cant help it though. I would do damn near anything in the world to help him so he didn’t have to deal with this on a daily basis.
I know that im being selfish and that makes me feel worse. But Im at my wits end and I don’t know what to do about it. The doctors don’t seem to have any answers. We have taken him everywhere from UCSF, to the Mayo Clinic in Santa Barbra , not to mention Valley Children’s , his doctor whom I adore, has even talked to his collegues about Ryan and what could be causing these episodes.
I want to help him so badly. I want this to at least settle down to make life for him worth living and a tad bit easier on me as well . I know the least of my worries should be about my life being easier , but that’s where the selfishness falls into play.
So today I don’t want to be a mom, I don’t think im being a good one, my heart hurts for him so badly but I don’t have sympathy left in me. He wouldn’t want me to be sympathetic anyhow, He would want me to be strong like he is and " keep on truckin"
I love him dearly and I just want to help him. But Im lost and have not a clue where to go from here. I wish it was easy to just take off and walk down the beach as the sun sets over the water, and forget our troubles for a while, just a few minutes. I am sad and sullen, I have so much on my plate right now, I think I really may be headed to the funny farm. I feel myself cracking and I pull myself back and take a deep breath. I just don’t know how much longer I can hold steady.
So these episodes he is having , He has Myo-clonic, jerk movement , absence and drop seizures. But these episodes are so very strange , like i said its like he is flapping his arms attempting to fly away, his shoulders just shrugging up and down rapidly, his eyelids fluttering , his eyes rolling back, loss of bladder control ( today is the first time he hasnt wet himself) this non coherent blank stare, " lost in la la land" Jibberish talk when he does respond. and just all around strange movements, as i described above. Anyone that has any ideas what this could be or what the cause is , please let me know or any suggestions on what I can ask the dr about. I did videotape one of these episodes. Sighs.. please any help and or suggestions or support , a shoulder to let me bawl on .. anything.. I dont mean to be selfish . sighs i just am at a complete loss right now and that is killing me !
I am not in the mood to be a parent today, although there really isn’t much that I can do about it either. This has just been one of those weeks for me. I’m upset that I was late to work again this morning.
Since December Ryan has been having a new type of seizure, His arms flap like a bird trying to fly only its not that rapid, his shoulders are shrugging very quickly, his eyes are blinking really fast and rolling back into his head, he normally looses his bladder control, and seems so disoriented. He is unable to dress himself, or even remove his clothing, he cant follow the simplest of directions. It was happening once or twice a month since December , until Febuary when it became much more frequent to 3 times a week for a week then back to normal . Then comes March and its off and on again. Weeks would pass with none of these new symptoms ( seizures)
Which brings us to April, Today is Friday and out of these 5 days of the week so far 4 days have been these weird ass seizures. I try to give him meds as quickly as possible, to try to get his blood levels back up in case it’s the meds that have dropped while he has been sleeping. These weird seizures ONLY HAPPEN IN THE MORNING !!!!! I thought that it was because he was overly tired at first , but now I don’t think that is it at all. Im so frustrated I could scream and rip all my hair out, I want to cry and throw a tantrum.
This morning was "wonderful " in the sarcastic sense that I wasn’t able to get Ryan motivated enough to get moving, and when he finally did get moving he was in his La La land little world. I told him to get his meds because I noticed his seizures on a rampage this morning, He stood there in the middle of his bedroom not moving one inch , just staring at nothing , seemed like he didn’t even hear a word I said to him at all, I told him again to go get his pills , I had to take him by his arm and pull him into the kitchen
He stood at the kitchen sink just staring into the air , then he did this washing of his hands motion , but the water wasn’t even on ! I tell him to get a glass from the cabinet and he walks over to the cabinet that we keep the medications in , and just stands there, I grab him and pull him over to the cabinet that the glasses are kept in and he just stared at me, I was SO SO FRUSTARATAED ! I hand him a glass and tell him to get his water from the fridge so he can take his pills, he walks over to the fridge and pushes the water button with his glass, only his glass is UPSIDE down so water gushes all over the floor and all over him ! I grabbed the glass and filled it with some water and told him to take his pills from my hand, he still just stood there. I told him to open his mouth and take the pills he didn’t move. I had to grab his face and force his mouth open, I dropped the pills into his mouth and he still just stood there, I literally had to take the glass of water and pour it into his mouth and tell him to swallow his pills. He did finally swallow his pills , and he kept trying to get past me to get out of the kitchen , I have no idea where he was trying to go, so I take him back to his room and tell him he needs to get dressed, that I have to get them to school and to work.
I go into the bathroom to try and get myself ready, Madisson is getting dressed in her room , as Im blow drying my hair, I look across the hall and see Ryan just standing there with a blank expression on his face, still seizing. I put down what I am doing and walk back into his room. I ask him to please get his shirt on that we need to get moving that I don’t want to be late. He doesn’t reply to me at all, just stands there. So I pick up his shirt and sit him on his bed, lay the shirt on his lap and ask him again to put it on, and I walk back out of his room. 10 minutes later he still isn’t dressed he is just wandering aimlessly around his room.
I tell him " Ryan COME ON PLEASE !" " Get Your shirt off the floor and put it on " he walks over to his bed and trys to pick up his pillow, I said " Ryan are you kidding me ? Did you hear me tell you to get your shirt ? " he still stands there , he wont even look at me.
I don’t know if he couldn’t or he just didn’t want to. So he finally walks over to where his shirt lay on the floor and grabs a pair of his shorts instead, and attempts to put the shorts on like a shirt . I grab the shorts from him and hand him the shirt and he stands there still ! So I take the shirt and pull it over his head for him and tell him to put his arms in , he stands there like a statue. So I push his arms through, grab his shoes and tell him to go sit down on the couch and just sit there and wait for me and Maddy.
I throw myself together literally and run out of the bathroom , the clock said it was 7:35 and I had to have them at school in 5 minutes and they hadn’t even eaten yet !!! Ryan starts yelling some jibberish at Maddy about how his socks were on and you hear Maddy telling him " No Ryan you need socks on both feet before you try to put your shoes on " He yells back some jibberish that isn’t even coherent in the least. Mostly mumbles.
So again I go out there and attempt to quiet the situation, I tell Maddy thank you , and just to get herself ready that I appreciate her help but Ill handle the rest with him. I put his shoes on his feet and FINALLY we are ready to run out the door. I run to the coffee hut to grab a muffin for them and a coffee for me , and he is still talking this jibberish language and having these seizures.
I know that I should try to be more understanding and caring about this, he cant help it , I feel like a bad mother and a horrible person to get mad and frustrated with him about it. I cant help it though. I would do damn near anything in the world to help him so he didn’t have to deal with this on a daily basis.
I know that im being selfish and that makes me feel worse. But Im at my wits end and I don’t know what to do about it. The doctors don’t seem to have any answers. We have taken him everywhere from UCSF, to the Mayo Clinic in Santa Barbra , not to mention Valley Children’s , his doctor whom I adore, has even talked to his collegues about Ryan and what could be causing these episodes.
I want to help him so badly. I want this to at least settle down to make life for him worth living and a tad bit easier on me as well . I know the least of my worries should be about my life being easier , but that’s where the selfishness falls into play.
So today I don’t want to be a mom, I don’t think im being a good one, my heart hurts for him so badly but I don’t have sympathy left in me. He wouldn’t want me to be sympathetic anyhow, He would want me to be strong like he is and " keep on truckin"
I love him dearly and I just want to help him. But Im lost and have not a clue where to go from here. I wish it was easy to just take off and walk down the beach as the sun sets over the water, and forget our troubles for a while, just a few minutes. I am sad and sullen, I have so much on my plate right now, I think I really may be headed to the funny farm. I feel myself cracking and I pull myself back and take a deep breath. I just don’t know how much longer I can hold steady.
So these episodes he is having , He has Myo-clonic, jerk movement , absence and drop seizures. But these episodes are so very strange , like i said its like he is flapping his arms attempting to fly away, his shoulders just shrugging up and down rapidly, his eyelids fluttering , his eyes rolling back, loss of bladder control ( today is the first time he hasnt wet himself) this non coherent blank stare, " lost in la la land" Jibberish talk when he does respond. and just all around strange movements, as i described above. Anyone that has any ideas what this could be or what the cause is , please let me know or any suggestions on what I can ask the dr about. I did videotape one of these episodes. Sighs.. please any help and or suggestions or support , a shoulder to let me bawl on .. anything.. I dont mean to be selfish . sighs i just am at a complete loss right now and that is killing me !
I'm sorry. Do you have any family or friends that can babysit your son and daughter, just for a day? It really sounds like you need to take a day off if at all possible. Seizures are stressful for those of us who have them, as well as those who take care of us. It's hard not being able to stop the seizures. Have you been keeping track of what your son eats every day, what time he eats, as well as how long he's sleeping every night? If not, then start. Also, make sure you show the neuro the videotape you made. And if the frequency of seizures has increased, go and see the doctor as soon as possible. Just know that we are here for you.
