Not sure how much more I can handle.....

[WorriedMom]

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 !

[skillefer]

Hi Worried... Sounds like you're having a rough day. 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 neurologist 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.

[WorriedMom]

No one that wants to take on the task of watching them, and yes i know why, its a lot to ask, and for the rare occassion that someone says yes they want a ton of money to watch him. Im talking 50 bucks for 2 -3 hrs !! Thats more than a full day of daycare ! I simply cannot afford that,

I do keep a log of what he eats, how much he sleeps, the time he takes his meds, basically a daily log of EVERYTHING !

I do need a break, thanks for not jumping all over me when i said i wanted to Quit being a mom today

[RobinN]

My heart breaks for you. It is just so darn difficult at times.

My oldest was a very difficult child, with asperger traits. Very high functioning, so he is bright, yet would be such a hand full. Before I knew what AS was, I expected so much more from him. There were many nights that I would lay in bed thinking of how I could have handled a situation much better. I was very hard on myself. Many times I wanted out, and thought about ways to do just that. But when reality hit, I would make a plan of how I could do it better the next day. Of course it didn't always go as planned, but I got through one day to the next.

I was told at one time, that if I did it the best I could 70% of the time, then I should give myself a break the other 30%. It worked. He is 23 today (Happy Birthday, David) and he is a functioning lovely young man. Holds a technical job at a private elem school. Has a GF, and many impressive clients that he works with after hours. He still has AS traits, but actually diet is truly been a life saver for him.

Are there community babysitting services, where the kids can go for the evening and watch a movie or such? When we lived in the bay area, there was a service (can't remember the name off hand) where they had adults and Grandma's that would come instead of teens. It gave me a sense of relief, because David was so smart he would walk all over the young and inexperienced. Nanny's to Go.. I think was the name.
Give yourself a treat. Plan a night out. If you can.. try once a week.

Sounds like his seizures are overtaking his mornings.
This mom has recovered her kids.. not sure if you have seen the link to her site with a ton of ideas: www.danasview.com

Keep up the dialog... it helps to get through the muck.

[skillefer]

Hey...we all get tired of being parents at some time.....I'm helping to raise my 3 in-laws (all under 16), and there are days I just want to lock myself in my bedroom and not come out. But then there are times when they make me laugh or see something so wonderful. I can't say I totally understand how you're feeling....but I do understand stress. We're here for you.

[angel]

is your child on ssdi? after my son was born he was 3pounds 2oz was in the hospital for three months! which was pure hell for me broke my heart! I talked to a social worker who helped me in getting my son on social security disability.. they paid for daycare and also i had a home health care nurse who would come to my home once a week to give me a break.... he has slight cerebral palsy...
and has trouble with his speech & little trouble with walking movement.... he can be such a handful mood swings throwing fits yelling screaming kicking.... on the other hand hes such a sweat kid full of love and kindness hes like a little angel

hes 12 now and not on ssdi anymore....

Personally, I feel you should talk with someone about getting ssdi for your child.... and maybe a home health care nurse to help you out a little until you can adjust to the seizures hes having on your own... just think how scary it must be for him to be having seizures in the first place" & im sure he can feel your frustration.... it's really nice to have someone come into your home who you can talk to get advice from & they dont care if you take a nap Or go out for a little while it really helps trust me...

Love
angel

[brain]

No one that wants to take on the task of watching them, and yes i know why, its a lot to ask, and for the rare occassion that someone says yes they want a ton of money to watch him. Im talking 50 bucks for 2 -3 hrs !! Thats more than a full day of daycare ! I simply cannot afford that,

TWO ESCAPE ROUTES:

Contact your County Public School System
ADMINISTRATION OFFICE <--- The Headquarters
(Not the Local School)

They have a Resource Program that they
can help you out with - it doesn't matter
how old your child is - they will redirect you
and you may be eligible for County and/or
State Assistance/Program - where they have
Parent's Day Out - where they are able to
go out shopping, get tasks done, etc.

------------------------

Contacting YOUR Public HEALTH Department
is ANOTHER Resource Option right there as well,
they would have the same information, except
when you call them - as for the County Head
Nurse Secretary's Number (this will eliminate
all the run around and you'll get to by-pass
everyone in the system); once you obtain this,
do not hesitate to dial that number and talk
with the Secretary - he/she will have the direct
line to everything in sight!

[WorriedMom]

he isnt eligible to recieve SSDI as on paper my hubby makes to much money, We live in a pretty small community and there isnt a service around that you can hire such as the grandma's I wish there was, that would be wonderful. It seems as if every bridge we get to for some sort of help , ends up crashing down because of the amount of money that is made on paper, it really is not fun. I have called our local resourse and referral service and its the same old song and dance. I wont give up , Ill keep trying to find something

[tinasmom]

Is there a local foundation that can help you with respite care? I understand your frustration. Nicole has some other issues besides her E and it seems like we are in screaming matches everyday. There are times when I just want to leave. I hope that you can find some help soon because you need to take care of yourself also.

[Mainer]

I just joined this forum tonight, but all I want to say is that I feel your pain.

Not exactly what you're dealing with, but the wanting to quit. Just last week, I told my husband I wanted to quit. I felt so selfish and guilty about it, but it was real. So real. I just didn't want to think about it at all anymore. Much as I love my daughter (as we all love our kids) I had nothing more to give.

Thankfully, I was able to go stay overnight at my inlaw's house last weekend. My husband was home with the kids and hard as it was for me to leave, it saved my sanity. I thought I'd need a week (or more) to feel better, but it was amazing what a mere 15 hours did for me. It didn't change anything at home, but it changed my perspective and gave me a break.

I hope you can find some way to do this for yourself. It's not a luxury at this point, but a necessity. You need a break.

And don't buy into the guilt. You're only human. This is hard stuff.

Hang in there - big hugs to you.

[Bernard]

It sounds like he is having complex partial seizures and is post-ictal when he is non-responsive to you. I know with Stacy, when she had absence seizures, myoclonic jerks or atonic/drop attacks, there was practically no post-ictal period. Complex partial seizures are a whole different animal though. Post-ictal periods can last a while.

I've heard several theories about morning only seizures -including:

• low blood sugar (eat something right before going to bed)
• low med levels (adjust dosage timing)
• sleep apnea (not getting enough quality sleep)
• delayed digestive response to diet (dogtorj's GARD diet writings - sorry, don't have a link handy)

You might ask his neurologist about those possibilities.

[skillefer]

with Bernard.... Also, as stated above, you're no good to your kids if you aren't also taking care of yourself. You need to have a day off. See if your hubby is willing to give you a day off. You might be surprised. My spouse is soooo supportive. I just need to let him know what kind of help I need and he's there.

[WorriedMom]

Thanks guys ! I really appreciate all you have said here, Now to find time when im not at work and the hubby isnt either so that i can run away !!!
I appreciate you all very much , just venting has helped ALOT

[alivenwell]

That does sound like an awful burden for you to bear alone. Your husband has to support this one as well, even if it means that he takes a day off from work to watch your son. When your husband is watching your son, then you can escape (don't run away!). Let him have it for a while.

Your son sounds like he's in need of extra attention. Working moms always have the extra burden of watching kids after school, doing housework, and other mundane tasks besides their employment. Frankly, I enjoy my job. I go there to 'get away from it all' and I hope you keep your job as a means to escape from this.

Frankly, I'm also a dead head in the morning. It's the meds. I answer people or the phone and go right back to sleep. I sleep through several alarms. And, as you can see by the time of this posting, I'm a nighthawk.

I think that barbiturates in kids can also cause hyperactivity (just like we treat ADHD with stimulants like Ritalin).

It's possible your son is awake while you're asleep. Does he have a bunch of books to read or look at? Or, does he have a box of crayons and paper? Artwork is a really great way for him to express his feelings if he's unable to speak about them. The books may give him some independence and self entertainment. They'll also help you monitor his learning progress.

I had a similar burden from working 12 hour days for at least 3 months even during weekends. Needless to say, this made me a total burnout. I had to step away from the stuff and take a long walk each night. I finally accomplished that project, but did not hesitate to take a 2 week vacation after wards. That walk really, really helps a stress level by releasing endorphins which help you feel better. It also removes the adrenaline.

This just has to get better for you. It doesn't sound like it could be much worse!

Maybe both you and your husband can go for a two week vacation. It may help both of you as well as your son.

[Georgiagirl88]

Hey Worried Mom,

I am so sorry you are having such a rough time and I will pray that you get answers and that things get better. I know it can be so tough sometimes and you just feel like you can't take much more. Just remember that every day is a new day! I was reading about your little guy flapping his arms..and then I was reading Robin's post about her son with some of the asperger traits. It may be helpful to check with your doctors. My nephew is now 25 and has aspergers. He is highly functioning also. The flapping rang a bell with me. Have you seen any of the news shows with Jenny Mcarthy about her little boy with autism? One of the first things she noticed was the flapping and some of the things you mentioned. I am not saying this is what your sone has at all...it just may be worth looking into. Autism is a quirky thing. Also from what I have read, it can also be one of those things that can go along for some people with having seizures. It can't hurt to ask about it. I hope everything gets better!!! Don't give up! It will!! This is one of the dips in the road!

Hugs and prayers!!
Michelle

[korisue]

My first daughter was born by emergency c-section at just under 26wks gestation at 1 lb, 10 oz. I had to stay in Seattle (6hrs from my home) for 3 1/2 months while she grew in the incubator. She had a multitude of medical problems, mostly her lungs, from being so early. I remember crying every night and missing my home, my family, my life - until it hit me one night - this is my life now, she is my life now. She is now almost 7, totally fine and a normal busy tom girl! I think i was being prepared for my second daughter, Jess, to come along. Jess has being having seizures of every kind since 3 months old. Most of hers happened upon awakening, either from a nap or in the morning. I worked full time also for DOC and it was hard to adjust - but i did. Jessica's Dr finally (after a year) talked me into coming home because i was so unhappy with her day care and for someone qualified to take care of her was 1800.00 a month - NOT! I had to fight tooth and nail to get her state coverage and SSi and it took months - appeal, appeal, appeal - it's easy for the agency's to say no, but they get really tired of answering appeal after appeal - but it works. You do have to turn into a fighter to get what your family needs now - but it can be done nicely :-) One phrase that has always helped me when i'm having a bad day is this:

MY CHILD IS EXACTLY AS GOD INTENDED HER TO BE - LOVED

So no matter what happens every day, believe and be positive. Smile when it hurts, laugh when you want to cry and praise God for your Family every day.

God bless and good luck.