feeling isolated and afraid for my daughter

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new to your forum, feeling isolated, afraid. my 40 year old daughter has lennox gastaut syndrome, the tonic episodes have increased in the past few months and she has fallen many times, broken her nose, lost front teeth.
she is scheduled for maxillo mandibular advancement surgery at the end of January to treat her severe obstructive sleep apnea which we hope in turn will help reduce the number of tonic seizures and falls. IF she falls and smashes her face/head after this surgery, her jaw will be fragile and may fracture. I am dreading the thought of the surgery and the recovery period, I feel stuck in a negative pattern, very isolated and alone with the fears. She is trying to live independently but has paid support staff through the local regional center. She can't take a step without having someone linking arms with her, up to four tonic episodes daily, high risk of falling. We see alot of one another, we are immigrants living in SF Bay Area, other family in UK not close. Her father died though we divorced when she was nine years old. He couldn't cope with her condition, drank and became violent. I remarried, got divorced again, very painful- maintaining healthy balanced relationship very challenging with special needs child's demands on time energy attention focus. Feel like a failure, very low.
Anyone relate? Can't sleep well, docs want to throw meds at me which haven't helped with depression or sleep, just made me feel awful. Feeling trapped and scared about the outcome and future.
 

Nakamova

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Hi sophiesmom, welcome to CWE!

It sounds like your daughter is getting very good care, and has excellent support -- yours as well that of her medical and support staff. It's okay (and very normal) for you to worry about her. But it's also important to recognize that there are limits to what you can do on your her behalf and limits to what you can control. You can't wrap your daughter in bubble-wrap, and you can't be at her side every minute of every day. Keep in mind that living independently is also part of her being healthy and having a good quality of life.

You are not a failure! As you say, having a special needs child requires a lot of energy, and takes a lot of attention. You have given those things to your daughter, now you must give those things to yourself too. Consider seeing a counselor or therapist -- often that can help just as much or more than more than anti-depressants. It's important to keep active as well. Exercise and physical activities are as good for the soul as for the body. Walking, gardening, and just getting outside can help. Are there any group activities you are interested in? Those can be especially beneficial and serve as an additional form of support.

Take care of yourself,

Best,
Nakamova
 
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feeling isolated and afraid

thanks for your supportive reminders- I've done therapy for years, perhaps I should go back for a while; as for physical activity, could use a tune up there too - she needs to be protected and objects and resists and then I have to deal with the aftermath when she gets hurt in a fall, as well as she has to deal with resentment and being hurt, tough on her too of course. She sees a therapist weekly gets it all out on great collages. I started a parent support group for parents of special needs adults, but got tired of having to be the one always running the show, others too busy to help or show up regularly, so it fizzled after a couple of years, though was helpful, in touch with a couple of the moms still. I've approached a couple of moms at my church who have daughters with extra needs, though not epilepsy, to see how we can support one another, I know it's good to have that. And at 3am which is when the anxiety hits and I'm awake, can't call anyone and bawl. My current partner is sweet and supportive and I don't feel like "burdening" him all the time. Writing it out and getting your reminders is helpful, thanks so much. Hate having pity parties, but anxiety takes its toll.
 

Nakamova

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We're here if you need to vent or bawl at 3am! The "Padded Room" forum is especially good for that...
 
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feeling isolated and afraid

padded room sounds about right, will check it out, thanks
 
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sophiesmom.... I just want to give you a hug. You are evidentaly a fantastic and caring mother and deserve it. Look forward to seeing you in the padded room! *hugs* xxx
 
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ok, so now I am all weepy, thank you, that is so nice, a virtual hug is always welcome
 

Ruth

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I fall down many times. I have a wheelchair that I use once in a while. I use it when I have falls. I also have two walkers. That is a good way to get outside and go for walks and get exercise.

You said that you try to protect her. She resists and then she falls. Maybe you are over protecting her. Stress can cause seizures, as well.

You are a great mother and are doing a great job. It is not always easy to know what to do.

Welcome toe CWE, it was made by Bernard, out of love, for his wife Stacy. That love permeates throughout the forum. You will feel comfortable here.

HUGS,
 
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feeling isolated and afraid

so appreciate your support and kind words
a walker would just be something more to trip over and perhaps get hurt
I could easily agree to overprotection charges, hard not to, she is like a child, clings a lot at times and pushes away, which I completely respect, my wish is for her independence above all else, her uninformed, rash choices create hardships for her, hard for moms to see that esp when they have to come to the rescue, appreciate your comments very much
 

Ruth

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Hi Sophie,

I hope I did not sound like I did not know what you and your daughter are going through. It is tough to know what descions to make.

I apologize if I sounded like I did not know what you are going through. It is true that I am not going through the same thing that you are. I know that you are doing the best you can under the circumstances and I commend you for that.

I raised two sons who were going through bad mental illnesses. I had to make descions that I did not know if they were right or wrong. I did the best I could while they were growing up. Both of my sons are independent.

I am the one who uses a walker or a wheelchair sometimes. I fall down a lot.

Again, I commend you for doing the best you can. You are doing that out of love for your daughter.

HUGS
 
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feeling isolated and afraid

Ruth, no offense taking at all, sorry if I sounded brusk, as a mom you know how it is with kids, hugs to you too my dear, good luck with the falls, what type of seizures do you have? it is good for me to know the different types as Sophie can't always explain the freelings, and forgets so much thanks
 

Ruth

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Hi Sophie, you were not brusk at all. You had no way of knowing about me. The forum is a good way to get to know each other.

I cannot even do simple yard work without falling down. I have had several types of seizures, status epilepticus, Tonic Clonic, simple partial, aura's. Then I was diagnosed with Diabetes to see if my Diabetes Type 2 were a possible cause of my seizures.

It came out positive. When I keep my diet and exercise under control, I hardly have any seizures. Diabetes can cause seizures. Now, I have been diagnosed with Alzheimer's.

All 3 are from the brain and can cause seizures and falling down. Falling down are seizures. They are called atonic seizures.

I recommend to everyone with seizures to be tested for Diabetes. It is a simple blood test. Here is the link:

http://www.isletsofhope.com/diabetes/complications/seizures_1.html

I am on the glycemic index diet. When I go off of it, I have seizures, falls or both.

My damage in my brain was done many years ago, so I still have the falls.
 
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feeling isolated and afraid

Ruth, I am sorry about your falls and your diagnoses, your life must be a challenge in so many ways and Alzheimer's on top of everything, goodness
that makes things complicated, and yet bless you for taking the time to write to me about your experience, I am very touched by that

I will mention the diabetic component to her doctor and get a test done
it is entirely possible her seizures are diet related in some way
also
there is talk of putting her on the ketogenic diet or at least the socalled cave man diet rich in protein, vegetable and very little carbohydrate, though we are waiting until after her jaw surgery for the sleep apnea to be corrected before making more changes in her life, one thing at a time or we can't tell what is working and what isn't
I am a prayer chaplain with Unity and my prayers and blessings go with you Ruth as I affirm your wholeness in Spirit, I know you are a woman of God.
 

Meetz1064

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Sophie

You are a strong woman for doing everything that you do, and that strength is deep within you, although it is tiring.

But you DO have a ton of support here, and we'll happily give it to you, whenever you want it. :)

I am the E patient, but am the parent of an Asperger's child. He's 22 now, and about to graduate from college. He's had many, many, many health challenges along the way. The first 5 years were touch and go. I thought THAT was hard....but I commend you as well.

Lean on your partner more. I'm sure that they'd be willling to give more, if you asked. While it's sad that your family isn't willing to be supportive, are there any nearby friends that can be of help? That you might be able to spend time with once in a while, as a day out?

Many hugs.....

Meetz
:rock:
 

Ruth

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Hi, I agree with Meetz, you are very strong.

You and your daughter need to get to people who will support both of you. More than that, you need friends. You are a very strong religious person, I am sure that your religion will help you.

I always took my children everywhere with me and showed them lots of love. I am a Jehovah's Witness and my friends treat my family as normal.

That is the way it should be, at least that is what I think.
 

jyearta

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Hi Sophiesmoom,

In reading about your daughter, it sounds that you are doing all you can.

In Atlanta there is a place called "JUST PEOPLE" it is a village where disable people live and get the help they need.

I don't know all that much about it.

I have a friend who's daughter lives there. I have gone with her to visit her daughter and it looks very nice.

They have staff members that help their clints with each one's needs.

I didn't know if there could be something like that there in SF
 

Ruth

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Thank you jverarta,

I live in California.There is a place in SF. I have taken my 2 sons to UCSF for medical needs. It is a great hospital. They have a place where parents can spend nights there with there children. I spent about 5 nights there, while my sons were being taken care of by the doctors.

I also got a lot of support there.
 
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support at UCSF

thanks, I know this is a great place, she is a Kaiser member, it's possible she may be referred to outside consultant in future, she had a complete workup when she was there at the age of 5 in the well baby clinic, they were good to us, I so appreciate your considerate response
 

Ruth

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I forgot to mention UCLA. It is a great place too. You might want to check them out.
 
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