Newbie from Western NY

[sixpack]

Hello, I've been perusing your forum for about a week now and finally decided to join the group. I'm a mother of 6 kids, hence the name sixpack My eldest daughter, Lindsay (21), is adopted from my sister and she is the reason for my being here. At 4 months old she was diagnosed with a rare brain abnormality called Unilateral Schizencephaly along with optic atrophy and hypoplasia. Wow that's a lot to take in. Not a lot is known about this abnormality especially in 1987. What we were told is that she'd likely never walk or talk and would likely have seizures by the time she turned 1. Well 21yrs later we have a child that has vision, motor, language, and cognitive disablities. She didn't start having seizures until she turned 13. She's a real mess but we love her loads. Her first seizure started as a complex partial but became generalized. She was on the school bus!!! For the first few years we were able to keep them fairly under control with a few complex partials or simple partials breaking through. In the last two years or so we've really started having scary changes in the seizure activity. We now see, in addition to complex partial seizures and simple partial, tonic/clonic, tonic and the horrifying atonics. I say horrifying because three of the atonics have resulted in trips to the ER. I will say that we have a very caring neurologist. He really works to help us. I actually have his cell phone number that he answers "hello" and not Dr. R. Anyway we are trying several things hoping to calm down the activity. We've added her third seizure med and will soon start Birth control Pill. We are hoping the BCP will allow us to wean her off one seizure med. She recently had an EEG and it did show changes from the previous EEG of 18mos earlier so we have some work to do. Anyway I'm impressed at the support you all have for each other and am looking forward to getting to know you all better.

[Cint]

Hello sixpack & welcome!

Wow! What a handful you have and a wonderful attitude! It's great to hear that your neurologist is so caring that you have his cell phone #. I sure hope you find something that works for your daughter's seizures and you'll have our support here.

Cindy

[josieb]

Welcome to the group, sixpack. I'm so sorry to hear about the on-going problems that Lindsay has been going through. It does sound like you have a great neurologist and believe me, that can make a world of difference. Hopefully trying something new will help to better contol the seizures and continuing problems. I wish you and your family well.
Sincerely,
Josie

[Bernard]

Hi sixpack, welcome to the forum.

It sounds like the seizure activity is related to physical problems in the brain. anti-epileptic drugs just try to regulate/dampen brain activity to prevent dams from overflowing (so to speak) - they don't help fix the root problem. I'd recommend you investigate LENS neurofeedback or EEG neurofeedback as a means to help the brain reorganize/retrain itself to work better.

See if you find a copy of this book for more info on the LENS system: The Healing Power of Neurofeedback: The Revolutionary LENS Technique for Restoring Optimal Brain Function

[Meetz1064]

and how do ya do, SixPack? It's very nice to "meet" you!

Wow, you've taken on a lot with Lindsay. And what a WONDERFUL neurologist you have!

Feel free if you haven't already, to check out all the nooks and crannies in the forum.......Mr B has built us a wonderful home here. AWESOME, actually.

Take care!

Meetz

[sixpack]

Bernard,

Yes definitely the brain abnormality is the cause of the seizure. Interestingly enough it appears she's 'burned' out the abnormal portion (the schizencephaly side) of her brain regarding seizure activity. Most of her activity is now on the left side temp, parietal and occipital lobes.

I just looking at your links. Sounds interesting. Would either one be something a person with a low IQ, sensory integration problems be able to handle. Mind you she has to be put under general anesthesia for EEG, MRI etc. EEG feedback doesn't appear feasible in that regard for her. I was not sure about the LENS.

Thank you for the info

[skillefer]

Hi Sixpack! Welcome to CWE. As you can tell, a friendly group. Sounds like you have a lot on your plate with Lindsay. Feel free to check out all of the rooms here, ask questions, vent, or just chime in.

[Nancy]

Bless you heart for being such a strong, kind and generous person and doing all this work. You are WONDERFUL!!

[sixpack]

thank you for the nice replies.

shoot I don't know how strong I am. I often feel like I'm hanging by a thread. But hang on I apparently do.

[Bernard]

... I just looking at your links. Sounds interesting. Would either one be something a person with a low IQ, sensory integration problems be able to handle. Mind you she has to be put under general anesthesia for EEG, MRI etc. EEG feedback doesn't appear feasible in that regard for her. I was not sure about the LENS. ...

EEG neurofeedback requires active participation. It's like excersize for the brain.

The LENS system is a passive system. It doesn't require the patient to do anything actively. It's still fairly new, but has some very promising results with TBI patients and more.

Stephen Larson, the author of the book I mentioned earlier, has a clinic in New Paltz, NY. You might try contacting him for more info on the LENS: Stone Mountain Counseling Center

[seizures4ever]

Wow sixpack,

I have to agree with Nancy and others. You are a strong person!

I want to welcome you to the forum, and I hope you'll ask all the questions you want to here. We definitely are a supportive bunch of people...we laugh and vent and comfort each other.

I am so sorry that you and Lindsay (and your family) have to go through so much. All my thoughts and prayers are with you all. -Julie

[drarvindr]

We've added her third seizure med and will soon start Birth control Pill. We are hoping the BCP will allow us to wean her off one seizure med.

Dear Sixpack ,
Be very careful about starting birth control pills. Make sure her liver function is good before you start them off. Most anti seizure medications are metabolised in the liver and BCPs compete for the enzymes that metabolise the drugs. Get a Liver function test if you've not got one already ( Sr. Bili, AST ALT GGT LDH). It's great that you have a friendly neurologist. I wasn't as lucky. mine's a jerk .he's good at what he does but people skills is kind of his achilles' heel. Hope lindsay gets better soon!

[sixpack]

Drarvin,

She had a complete bloodwork up at the end of August through her primary doc. Her brain abnormality invites endocrine probs so gotta check on that once in a while. Her T4 and TSh indicates she may be hypothyroid, but I have my doubts about that. Just rechecked the thyroid last week and it's up a little since going on thyroid meds. All of her other tests---bili, AST ALT etc were all normal and lookin' good.

She actually sees an endocrinologist tomorrow. As I said her abnormality invites endo probs. SHe's had weight loss probs for a few years that haven't had any med explanation until this last go round with bloodwork. THought since it was abnormal we'd check it all with an endo.

Thanks for the input anyway. Yeah you have to really watch everything with her.

Oh and yes we are lucky with the neurologist. L had a seizure last night and this morning. I called him and you could almost 'hear' the look on his face. He is quite concerned about here.