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Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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 Dick 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. Dick 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.
Dick 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

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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 Dick and I hope things will settle down for you guys :)

-Craig

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Kathleen, I cannot imagine going through all of this. It must be hard watching your daughter go through her seizures on top of what your husband if going through.
I'm sending good vibes, peace and prayers your way.

mom_2_3
Posts: 965
Joined: Nov 2008

Sending many prayers and good thoughts to your family.....

Amy

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

I will include your daughter in my prayers tonight...I pray for everyone on this board nightly in our family prayers. God Bless you both, Patti

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

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

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

...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 Dick'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!
~Donna

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

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 Dick's illness, your daughter's needs give you and your husband a special reason to fight and survive.

You are in my thoughts.

Hatshepsut

Muzzy's picture
Muzzy
Posts: 178
Joined: Sep 2009

I'm so sorry to hear this.
You 2 have been thru so much.
My prayers will be for your whole family tonight.
Jeff
Happy to be here!!!!!

tammy41's picture
tammy41
Posts: 50
Joined: Mar 2007

so sorry sending positive thoughts and prayers your way

mommyof2kds's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

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.. Petrina

grammadebbie's picture
grammadebbie
Posts: 471
Joined: Jun 2009

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)

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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. Dick 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,
Kathleen

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

If only we could just deal with one thing at at time! I, like others, can only imagine what you are going through.I hope the days ahead bring relief.
Prayers and energy on the way.

Rob; in Vancouver

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi Kathleen,
I'm so sorry for all that you are going through. My gosh you are such a great mother and wife, I'm praying for your daughter and your hubby also. I hope that all goes well. Much love and Aloha
Donna

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Oh, Kathleen.

When it rains, it pours! I'm sorry this is going on, and I know it must feel like such a weight on both of you. I'll be praying for you and your family.

*hugs*
Gail

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

Hope your daughter is better today, your plate is over full. Best thoughts for you

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

So sorry that you are going through so much,I wish I could tell you something to make you feel better, but at least I can offer you my prayers each and every night. God bless you.

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

You certainly have enough going on. My thoughts are will you all
-phil

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

Jennie

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

My thoughts are Prayers are with you and your family. God Bless. Margaret

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi dear Kathleen,I am so sorry to know that you and your family have been through so much.It's so sad to see the kids suffering from anything that they are not supposed to.I hope you already have the right medication for daughter to control her seizure.It's not bad once it's under control like other people said.You guys are really strong and brave to handle with all these things.Yes,it is too much,I understand that sometimes people try so hard to move forward,but sometimes you feel like you are pulled back.You are in my prayers and best wishes to you guys,thing will get better soon.Take care.hugsssss.

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

((((((Kathleen & Dick)))))

Just feel the love vibes coming from us all holding you up through this. What a rough go.

Prayers on their way.

peace, emily

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

I'm so sorry for what you are going through. I will pray for your family.
Karyn

dmdwins
Posts: 453
Joined: Aug 2008

Sometimes it is just too much. I will pray that the burdens on your family be lightened and lifted.

Dawn

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Everyone,
Thank you so much for your support this week. Your thoughts and prayers have been very helpful.
Our family is out of immediate crisis :) . After Katie's two Grand Mal seizures Tuesday night and Wednesday morning she slept 34 out of 36 hours. On Thursday she just rested and on Friday she was back to herself. The two of us even went and watched a high school football game on Friday, she loves the band.
We met with the onc on Thursday but I have some questions so I will make a new post.
Thanks for caring.

Aloha,
Kathleen

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