Ohio Mom needs help,please

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babyfish

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Hi! I just posted my intro, but need some serious help.

My 16 yrs old dd has a bunch of things going on and I need to help, but I can't help her unless I get help (hope that makes sense).

1. What kind of testing should I have done? Other than an EEG, should I have a sleep test done? I know she snores and also wakes-up during the night from seizures.

2. She was diagnosed with ADHD and was on Adderall XR but I weaned her off of that (the doctor and I) over 1 year ago. Was this a bad idea?

3. What types of services (therapy) should I get for her so she and (the entire family) can learn how to deal with pain, headaches, misunderstandings, how to relate, ect?

4. Could she have an underlying medical/mental conditions that perhaps, haven't been addressed? Are there/could there be other medical conditions that I don't know about?

She's so tired all the time, she fights and argues, cry's, gets frustrated...she's just not her "old" self. I really need advice. I know no one is a doctor but if you or a loved one has had any issues like this and could please share with me what you did or do to relieve the pain, or what type of testing you had done...I'd greatly appreciate it!

Oh, I live in Northeast Ohio and my dd goes to a neurologist at Akron Children's Hospital.

Thank you so much! Stephanie
 
First,

YES, you make sense.

Second, shoot for AT LEAST a 24 hour EEG and an MRI, and a sleep apnea test definitely wouldn't hurt. The 24 hour EEG will cover ALL aspects of the daytime, including the seizures that you are speaking of that she is having in her sleep (sounds like myoclonic). The MRI will check for physical abnormalities that may be the cause of the seizures..........The sleep apnea test will check to see if she is getting enough oxygen at night, and actually if she is having seizure activity going on, too.

Third: I myself have ADHD. Taking her off the med you mentioned may or may not have been a good idea......who really knows? Start letting her drink some coffee. It will (not a joke) help her focus.

Fourth: Counseling really wouldn't hurt, if you really think your family needs it. Also, go to the www.efa.org and check out their First Aid page, as well as the one on www.epilepsy.com. Make sure everyone understands it.

Fifth: Take one thing at a time. If there are other things, well then, take them as they come. Yes, it's a possibility that there is something else there, but worrying about it is NOT going to do you ANY good at this point. Except raise your blood pressure unnecessarily.:bigsmile:

DO take into consideration dietary changes--for some people (like me) they are the biggest difference in the world.....

It's going to be all right..........Knowledge is power, Stephanie, and you've come to the right place to learn! :)

Meetz
:rock:
 
Thank you so much for replying and giving me a lot of very helpful information.

1. Should I go to her family physician for the testing or her neurologist?

2. What type of dietary changes have helped you? Maybe they will help her also :)

3. Having ADHD, can this cause more seizure activity when a person doesn't take meds? Like, could she benefit more by taking ADHD meds along with her seizure meds?

4. Could needle-less acupuncture (sp?) help or hinder...or neither? Is it even safe to get chiropractor help?


Again you don't know how very thankful I am to be here! I don't feel alone now...or lost! I have to educate myself for my children. (My 9 yr dd seizures have been controlled by meds since June 08. Praise the Lord!!)




Thank you! Stephanie
 
babyfish said:
4. Could needle-less acupuncture (sp?) help or hinder...or neither? Is it even safe to get chiropractor help?
Click to expand...

You left out one option & that is both. I am an acupressure student & can vouch that it can help seizures as long as the person giving the treatment knows what they're doing. Otherwise it may trigger more seizures.
 
babyfish,

Re: your daughter's night seizures ~ IMO

Sounds to me like her brain could be lacking oxygen while she sleeps, could be for various number of reasons.

IMO ~ I would try to get her a referral to see a sleep specialist. They can do an EEG on her while she sleeps. From this, they can see if she's getting enough oxygen while she's sleeping and/or if she's having seizures in her sleep that she doesn't even know about causing her to feel tired, no energy, soar throat, sore chest muscles, She could have a form of sleep apnea, easily cured, which is causing her problems.

Maybe worth checking in to.

Randy, 28 years of epilepsy experience.


--------------------------------------------------------------------------------
Diagnosed with Epilepsy & Ulcerative Colitis.
Current Medications: Diantin 275mg, Pheonobarb 150mg, Asocol 3,000 mg.
 
IMO you should definitely look into nutritional changes. I don't call them dietary as that implies a negative relationship with food.

You seem desperate, as I was too when my daughter was 14 and changeing right in front of my eyes. Though I have to admit for a good amount of it was brought on by the medications. My suggestions would be to take all gluten, casein, corn and soy out of her diet. Don't drink any processed drinks. Move to organic lemonade and water. Eat organic whenever possible, and bulk up on fruits and veggies and add in proteins throughout the day.

To be safe you could have the IgG test done which will tell you if there are any foods her body is allergic too. This is a blood test and not a skin prick test. Sometimes we are feeding our children eggs as a staple when they are actually sensitive to them. But beginning by eliminating the four that we are most allergic to, is a start.

Also, do not compensate by adding in a lot of simple carbs. You can not substitute wheat with rice, or potatos and leave out the veggies. The simple carbs will cause a blood sugar imbalance that can also be a trigger. Stay away from processed foods.

People may think you are crazy, but we have plenty of info here on CWE to back up our suggestions. It isn't harmful in any way, so there shouldn't be any reason your doctor looks at you cross eyed. It is a way for your son to take control. In fact he might be reacting to foods that he has eaten later in the evening, during his sleep.

Do keep a journal, of anything and everything that could be causing the disturbances. You will begin to see a pattern if you are lucky.

We are here for support.
One day at a time. Actually in the beginning it is one hour at a time.

OOPS sorry I said "he" when I just read your other post and saw you had a "she"
 
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babyfish said:
1. What kind of testing should I have done? Other than an EEG, should I have a sleep test done? I know she snores and also wakes-up during the night from seizures.
Click to expand...

I would think a sleep study to test for sleep apnea would be a good idea.

babyfish said:
2. She was diagnosed with ADHD ...
Click to expand...

I would highly recommend looking into neurofeedback. Many insurance carriers will cover it for ADHD and it can be beneficial in treating both ADHD and epilepsy.

babyfish said:
She's so tired all the time, she fights and argues, cry's, gets frustrated...
Click to expand...

This could be post-ictal behavior, side effects from AEDs, a result of sleep apnea or just all around frustration from her circumstances IMO.
 
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