new mother looking for hugs and kind words

[kimmistin]

Hi, I am Kimberley...mother to a beautiful little girl with uncontrolled epilepsy.
It seems a lot of you here indeed have this crazy life and are coping quite well even. Congrats to all of you!
I am looking to find other mothers here to chat with about this life.
I want to understand what happens also when you have a seizure; my daughter is non verbal so I can only guess what she is feeling. Her seizures range from hostile to happy. Sometimes she laughs like she was just told the greatest joke, other times it is like a monster is coming down the hall towards her and she cringes, screams and seems frightened. So hard to witness, and so helpless I am feeling daily emotions that keep us all on edge, without deep sleep and afraid of what could happen to her in her sleep. She has poor tone and low breathing; so her need for oxygen at night and even during the day when her allergies hit is another daily concern for us. She is not mobile as we also have CP so she cannot even roll herself over when she chokes in her sleep! YIKES! getting the picture? stress rules my life...fear is right there hanging with stress...lucky for us we do have respite care and my nurse is with her right now. Yet, this feeling of??? overwhelmed, anxious, tired,bitchy...will this always be the "new me?" looking for a big hug today I think....

 

[Nakamova]

Hi kimmistin, welcome to CWE!

I send you an enormous hug. Clearly you are going through a lot, and are also very strong.

The Nursery forum here is specifically for parents of kids with epilepsy, so you might want to check that out.

The members here have experiences with all kinds of epilepsy. I'm sure they'll chime in with input on what their seizures feel like. (I only have tonic-clonics, so I'll leave it to other members to describe the complex partial seizures).

Hang in there, and make sure you are taking care of yourself too.

Best,
Nakamova

 

[kimmistin]

thanks, the computer added the partial seizures..i just typed in seizures..she actually has many many tonic clonic seizures daily too...poo poo! everything seems to stem from her basil ganglia area of the brain so a lot of her "tick" do not even show up as a seizure on an EEG...we've watched her have theses huge involuntary movements yet no eeg seizure while she was hooked up to eeg machine, so odd, frustrating and damn exhausting for me!
she's on Keppra,1500mg and zonegran 200mg and clonopin .05mg daily...yikes! wish she could just be med free-

 

[Nakamova]

The Keppra may be contributing to some of your daughter's hostility -- some members here have experienced the side effect of "Kepprage". Taking a B vitamin supplement with B6 seems to help, but you should should check with her doctor before considering adding anything.

I'm sorry your daughter's on so many meds. One member here, RobinN decided to pursue a dietary approach to her daughter' seizures, combined with neurofeedback. You can read about her story here:

http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

During my tonic clonics I don't feel or remember a thing -- it really is as if my "computer" was shut down. When I do come out of it, even when I'm conscious I'm not entirely "there" for the first half-hour or so. I can have conversations but not remember what I'm saying. Usually there's soreness and exhaustion and some nausea, and the best I thing I can do is lie down until I feel better. The seizures are no fun, but since I don't remember what happens during them, they are not so bad it seems.

 

[RobinN]

Hi kimmistin -
Please do read (or skim) Rebecca's story. There is about 4 yrs on that thread now.
It sure is not easy being the caregiver to a child. I was one of the lucky ones, to have had a good 14 yrs with a daughter that could do anything. Then the summer before high school and all of that changed. I must add here, that we are at a point that my daughter can once again do almost anything she puts her mind to. She is only denied driving privileges at this time.

We tried the meds, and they made ALL of it worse. I will only consider medication if it makes life better. As Nakamova mentioned, my daughters seizures have been reduced dramatically since we have made major nutritional changes. Also the supplements I believe have helped her as well. I also can not deny that neurofeedback was also helpful in supporting brain health.

I am glad that you have nursing help. You need to find time to renew or you will not be of help to your family. I am not clear as to when your daughter began having seizures. Was it as an infant?

 

[kimmistin]

Aurora

Thanks Robin, Aurora has had seizures since she was just 12hours old. We had a very rough delivery and she experienced hypoxia with every contraction for hours. I was allowed to push with her crowning for over 5 hours so her injury happened during labor. She had an official Diagnosis at 4 months of age as the nurses and doctors pretty much sugar coated the birth experience even though she remained in the NICU for 22 days. We were sent home on phenobarbitol and Keppra and told as a precaution to give her the meds for 6 months. Yet at 4 months old she started having severe myoclonic type seizures (infantile spasms) that scared the heck out of us; so we went to a neurologist in S.F. and within minutes of him seeing her he said she had severe epilepsy & cerebral palsy and would never...blah blah blah...we did 2 rounds of ACTH hormone therapy before she was even 8months old. We've been trying different med combos and even the Ketogenic diet for 3 years...all without seizure control. Now she is mid-puberty at 7! we saw the endocrinologist last week; told to expect her period next summer..yippee! she has had a huge growth spurt on my own organic diet though. 4ft tall and 65lbs. she was stuck at 42lbs for 2 years. I feed her live sprouted tofu with carrots or squash & use olive oil for fat , 1 organic turkey and fresh spinach meal daily and hemp milk and almond butter with fruit puree every morning after her initial fresh veggie juice which consists of 1/2 cucumber, 3stalks of celery and a handful of fresh spinach. This is an amazing diet full of fresh nutrient filled foods.
she is responding to it well. A nice weight gain and good daily bm's too which helps a lot.
The type of neurofeedback we do is for kids like Rory who can't follow a picture on a screen...it is called LENS neurofeedback and it is amazing. check out ochslabs for more info. Thanks again...K-

 

[RobinN]

I think I want to come live at your house. Your organic meals sound delish.

I studied the LENS when I was considering NFB for Rebecca. I was lucky enough to have the Othmer's within driving distance, so I chose that as an alternative therapy for my daughter.

What a pretty name for your daughter. I am sure with all the struggles that you have endured, she has also brought wonders into your world you would never have be introduced to, had she not been in your life.

I was told about puberty at 7 but it was difficult to comprehend. Luckily we did not see it until the age of 14, but soon after is when Rebecca's seizures began. I am finding ways to balance the hormonal surge in her system, which seems to be controlling her seizures, Thank Goodness.

Give Aurora a hug for me.

 

[Endless]

Hi, Kimberly,

<<<<<<hugs>>>>>

What a hard situation for your beautiful girl.

I wish I could put you in touch with my cousin. His little girl had infantile seizures from the time she was about 5 days old - quite serious ones that were uncontrollable with medication. On a last ditch effort they put her on vitamin B, and all her seizures dissapeared within a week. She's now about 4 years old, and is still seizure free.

Vitamin B isn't the answer for all babies/children, but it's worth a shot.

Question - your daughter is going to have her period at age 8? That's a bit early. Is she getting extra estrogen or growth hormones in her diet or her hair/body products? (Children not fed manufactured growth hormones, or external hormones in general reach puberty in their preteens.) That might be contributing to her overall health, too. Milk, meat, poultry, and some hair and body products are among the biggest culprits.

Also, I'm a little confused. Your title said new mother? Is it to your 7-year-old, or a new baby?

 

[kimmistin]

Aurora

Thanks so much for all the kind words of encouragement from all of you. I appreciate any info that is out there to consider if it can work for us. To answer some questions... Early puberty is due to her pituitary glad getting stirred up by seizure activity;I was told it is common by the endocrinologist.
and my statement of being "new" meant new to here. I have no other children and at 45 expect no more, fingers crossed. At 4 months of age I was told she would most likely experience a change in seizure activity when she hit puberty and that she would have difficulty in controlling her seizures throughout her life due to the huge insult at birth. Of course different neurologists "paint a nicer picture" and we always believe science is on our side. I made a deal with her that I would do my darn best to help her in this life. I try to help others with my insights and different therapies I find that can make the quality of all our lives better.
I am writing a book with my husband "the pissed of parents guide to special needs children" we want to make a series of "self help" books from a parents, semi cynical yet comical realistic view about all the issues that occur over time when raising a child with special needs. We hope to get it ready to publish this next year.
Epilepsy is more common than people realize and much tougher to deal with than one would know unless they live this life or love someone who does.
Well, I am wishing everyone a wonderful weekend...the fair is here on our town so I hope to get out there tomorrow with Aurora and her daddy.
Thanks again for the positive energy