too much
Kathleen808
Member Posts: 2,342 Member
Hi All,
This is a bit off subject but I am still coming to you for support. Our 12 year old daughter who has autism and epilepsy has not had any seizures for the past 5 months. Last night **** and I were relaxing and we heard a knocking sound in her room and we looked on her monitor (she is always on video camera) and saw that she was having a big seizure. We had to give her mouth to mouth and emergency meds. She fell asleep and slept 13 hours. **** is home with her today. She woke up for 1/2 hour and started seizing again. Once she is in this cycle sometimes it goes all day and she ends up in the hospital.
**** has his onc apt. tomorrow to find out what his chemo regime will be. We are feeling a bit overwhelmed. The good news is after many tests it showed his heart is OK.
Looking for positive thoughts and prayers.
Thanks.
Aloha,
Kathleen
This is a bit off subject but I am still coming to you for support. Our 12 year old daughter who has autism and epilepsy has not had any seizures for the past 5 months. Last night **** and I were relaxing and we heard a knocking sound in her room and we looked on her monitor (she is always on video camera) and saw that she was having a big seizure. We had to give her mouth to mouth and emergency meds. She fell asleep and slept 13 hours. **** is home with her today. She woke up for 1/2 hour and started seizing again. Once she is in this cycle sometimes it goes all day and she ends up in the hospital.
**** has his onc apt. tomorrow to find out what his chemo regime will be. We are feeling a bit overwhelmed. The good news is after many tests it showed his heart is OK.
Looking for positive thoughts and prayers.
Thanks.
Aloha,
Kathleen
0
Comments
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Kathleen
Kathleen
That has to be so hard for you both - I cannot truly understand what you are feeling and won't pretend to. I have no experience with that at all.
It sounds like you are great parents and you're plates are full.
Timing is everything and with the recent Dx followed by this, well it's easy to see how things can get overwhelming.
We've had things of a different nature but things build up and then snap, it gets a bit much.
Sending all my prayers and love via the Trade Winds to Oahua (I think you told me you were there).
Aloah to you and **** and I hope things will settle down for you guys
-Craig0 -
Awwww....maglets said:Kathleen and ****
oh my darlings....this is indeed a full plate. Please let me send all the positive energy I can...I have onc tomorrow too....I will send best thoughts
and best wishes and thoughts for your daughter
mags
...that poor little girl, I hate that kids have to suffer too, it always gets to me, my friend has twin boys who are autistic, they are 10, and still in diapers, and finally she had to get some help at some rehab facility, because they started getting abit violent, one of them has seizures, one doesn't, and I feel so bad for you both to even have to watch something like that, you guys are very strong, I'd be such a mess.
I hope ****'s appt goes well tomorrow, try relaxing, I Know easier said then done, but does she go to the appts with you, or is someone watching her? I hope she gets better, is it her medicine or something that may need to be adjusted is why she is going through these long seizures? I have an epileptic friend, and she never had it where it was all day, though she said it took awhile to find the right meds for her, and now they don't come on as bad.
My thoughts and prayers are with you all! I wish the best for your family! let us know what happens tomorrow!
Hugsss!
~Donna0 -
Kids having seizures are so
Kids having seizures are so scary. Hope she starts to feel better and the seizures stop, life can just be so crazy at times and the stress just never seems to stop. But hang in there, alot of people are praying for you and you will all get through this.. Petrina0 -
Kindnessmaglets said:Kathleen and ****
oh my darlings....this is indeed a full plate. Please let me send all the positive energy I can...I have onc tomorrow too....I will send best thoughts
and best wishes and thoughts for your daughter
mags
Kathleen:
I have always been impressed with the kindness you project in your posts. Time after time, I've watched you to reach out to others with gentle and non-judgmental words.
I don't have words to tell you how sorry I am to read your post and to hear that you daughter is having continuing health problems. I certainly hope that she recovers quickly. Clearly, she has a set of extraordinarily-caring parents. As exhausted as I'm sure you both are from ****'s illness, your daughter's needs give you and your husband a special reason to fight and survive.
You are in my thoughts.
Hatshepsut0 -
Heartbreaker
Dear Ones,
So sorry that your precious child had to go thru this and that you have to live thru it with her. I will continue to pray for you and your family. You are a wonderful couple and have been thru so much. Am glad that you got some good news back regarding your heart. Keep your faith and stay close to one another. Give your precious daughter big hugs from all of us.
God Bless You,
Debbie (gramma)0 -
your support is wonderful!
Thank you all so much for your kind words and support. It means so much to us. Knowing that people are thinking about us and praying for us gives us renewed strength. The amazing thing about all of you is that you are so caring and you all have so much on your plate too.
Katie has been sleeping 15 out of the last 16 hours. She woke up once, had another seizure and is now sleeping again. **** was amazing taking care of her today. All I want is for him to rest and relax and here he is taking care of Katie.
This too shall pass. I think I'll try to figure out something to be grateful for to lift my spirits.
Aloha to all of you,
Kathleen0 -
Kathleen and ****PhillieG said:Sorry to hear this
You certainly have enough going on. My thoughts are will you all
-phil
Well..... this IS right up my alley. Due to what we think was head trauma during an auto accident when I was 15 years old I suffered Grand Mal (now called generalized tonic clonic) seizures. I am in hospital now but that has been ruled out. Anyway, I went to Bethesda Hospital in St. Louis where they kept me for a week long stay to determine my seizure status (always wearing a helmet mind you) and what meds would work best. They worked in conjunction with Washington Medical University to conclude results. Depending on which area of the brain is affected, if its inherited and many other factors they can now do surgery to correct this. If not thru surgery the meds are so that I have not had a seizure in 14 years. Again, we are all different so you may want to research this. It would be so nice to rid yourself and your child of this life altering disease. The Epilepsy Foundation of America is a great start if you haven't been there. Please email or send me a PM if you want to talk further.Doc's are here for more tests. Take care. Prayers to your family
Jennie0
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