Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 Dear Barb, I truly appreciate your advice and I will check it out. I don;t get to get on the internet much in the daytime, so sorry I am so late in responding. I will read it and then talk to you again. Blessings! Joanie > Hello Joanie, > > Good to hear from you again. I'm sorry that and your family have > had to go through so much, but I'm glad you have found some success. > > The Gordon-Pomares Centre in Canada uses a technique called > Multisensoriality for Additional Pathways and Synapses (M.A.P.S.). They > played a significant role in stopping my daughter's seizures, and they have > CLEARED THE EEG OF A CHILD IN CALGARY WHO HAD LENNOX GAUSTAUT. > > I have listed their contact info below if you are interested in contacting > them. > > > The web link is: > > > > www.gordonpomarescentre.com > > > > The phone number is: > > > > 1-877-532-7246 > > > > > > > > It's worth the read, you won't be disappointed, > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Joanie, Reading your post makes me so sad for . Everyone's circumstances are different in some way, but we are all in the same boat and facing the same challenges. I just hope and pray that one day soon all our children will be seizure free for ever. Grace joanie46115 <bjwilson@...> wrote: Hi again, I just found your post where you gave a summation of your daughter's story. I am really intrigued. One of the reasons my son was misdiagnosed was because the had unusual seizures and dr's are amazingly ignorant as to what they look like or can be like. I had film of in what we now KNOW was non-convulsive status epilepticus and they all ho-hummed and said they weren't seizures - take him to a psychologist. Dr. Chez is very frustrated with these kinds of stories. He doesn't bash, but he will comment he just feels they aren't dedicated enough to try to learn all they can. His lady who does the eeg wiring says he get very frustrated with dr's who come and ask him to teach them, but he says they don't get it. Why?? I don't know, but I know this dr is driven by his work. Yes, he used drugs and I would love to get off them. He is certainly shooting for this. His goal was to stop the wildfire in his brain and then wean him off and have him left with, at most, a very manageable case of epilepsy. It was the best thing we could find. He says the keto wouldn't have worked for him and I believe it. 's seizures had become almost constant and we were having to call the ambulance and take him to the hospital - he was going to die. So your daughter had spike waves, too? I am wanting to do this, but I don't want to go to Calgary either!! The $5000 is daunting and so is the trip. I live in Indiana and I will not fly. You said they can do much over the internet?? I could deal with one trip there, but that would be great if they would do updates by email. I am really wondering about this. Oh, to have him off meds!! He has gained 50 pounds and has acne from steroids, moon face is better but is still there, and has a zillion stretch marks all over his thighs. He has leg pains and trouble keeping his potatssium. He sleeps about 16 hours a day between regular bedtime and naps. The drugs also make him slow mentally and it is hard to tell sometimes how much better he is truly. But he is doing a lot better the past two weeks. He is just so tired and run down. He says he feels like an old man inside. I am very anxious to hear from you! Blessings Joanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Joanie _www.andrewsreiter.com_ (http://www.andrewsreiter.com) _www.pathmed.com_ (http://www.pathmed.com) _www.amenclinic.com_ (http://www.amenclinic.com) _http://www.hriptc.org/_ (http://www.hriptc.org/) Good luck. mjh In a message dated 1/8/2006 11:20:02 PM Eastern Standard Time, bjwilson@... writes: What I am looking for now, i think, is someone who deals with both traditional and alternative meds. My concern about the VNS is apnea most of all, since we lost a child either to SIDS or apnea - they can't say which it was. Grandma and uncle have apnea, too. I also am not thrilled about leaving something in the nerve if it should not work for the rest of his life. Also, some prior posts in the archives said it might actually INCREASE seizures. I can't chance that if it is true. mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Dear , has a variant of Lennox Gaustaut, but he functions very well. Many with this disease stop developing early on and are mentally retarded with uncontrollable seizures and the prognosis is grim. They have a type of brain wave pattern which involves slow waves and such - finally showed that a few yrs ago - I guess he didn't earlier. He had been diagnosed with Temporal Lobe at 8 and later with Primary generalized. I am not sure where all the focuses are - I can ask. His last dr. is considered one of the top dr's in the world for this particular type of epilepsy and in the area of interpreting eeg's. He is having a sleep deprived eeg next week ( he had about 3 24 hr digital ones last year)and i will ask what she thinks about focuses. She worked at Cleveland Clinic, a top place for surgeries and she orchestrated the gamma knife surgery for my husband's friend. Se was the only dr. I would consider seeing in Indiana at this time. Any place outside of our ins network costs us 40% and Dr. Chez, our last dr in Chicago, did not deal with insurance at all, so we had to pay him his office visit and $350 to have the eeg evaluated, plus hotel and meals. We saw him about every 3 months and during steroid treatment 6 weeks. is on 1700 mg of Depakote, 1500 Keppra, 25 mg Topamax, and 5 mg Valium each day, plus 200 mg of b6. I am going to follow Arnold's advice to put him on a b complex and actually started today. What has is usually resistant to many meds and before Dr. Chez did the steroid treatment Depakote had no effect on him at all! Now, it keeps certain seizures away. What I am looking for now, i think, is someone who deals with both traditional and alternative meds. My concern about the VNS is apnea most of all, since we lost a child either to SIDS or apnea - they can't say which it was. Grandma and uncle have apnea, too. I also am not thrilled about leaving something in the nerve if it should not work for the rest of his life. Also, some prior posts in the archives said it might actually INCREASE seizures. I can't chance that if it is true. Have you heard that? I don't know what we are going to do yet, we need to pray. I hope it continues to do well for your daughter. Blessings! Joanie -- In , Traceygrubbs@c... wrote: > > Joanie, > I feel for you, you sound about as frantic as I did a while back. > My daughter just got the VNS on Dec. 8th and it was turned on the 22nd. So > far, I have seen some improvements in the seizure intensity but not in number of > seizure discharges. We have only been back twice to reprogram and her VNS now > stimulates every 3 minutes lasting 60 seconds. So if a seizure falls within > the non-stimulating period it does not work. However, as mentioned I have seen > some improvement in the seizure intensity being decreased and it has helped > with her personality. Prior to the AED's was an angel, very, very loving > child and then the AED's made her moody and emotionally unstable not like > herself at all but she is doing real well with these aspects since the VNS device. > The VNS also helps with attention span, memory, and sleep cycles (brainstem > controlled). > > You mentioned has several types of seizures. Have they told you how > many focal points he has? Where in the brain are they originating? > I just changed neurologists to one who just sees epilepsy patients (an > epitimologist) and sofar I am very pleased with her. She's the one who initiated the > VNS and proposed that if it does not work for the last resort is the > gamma knife. It may be in your best interest to find a neuro or epitimologist > who only deals with seizures day in and day out. I know NC is too far for you > but most states do have epilepsy institutes. > > A resource that may be beneficial to you is the S.E.E Program. Download his 3 > lectures on epilepsy. I went to one of his conferences and learned a lot from > him. There is a chart that tells you which meds is best for what seizure > type, etc. Also he emphasizes that monotherapy is desired, he is strongly against > adding second and third AED's. > > I hope this helps, if you need info about the things I have mentioned please > feel free to e-mail me back. > Sincerely, > Tracey > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Joanie, I did hear about the apnea and increase in seizures but has seizures every single night of her life so I was willing to chance the side affects. The only thing she has is hoarseness when the stimulator clicks on and it lasts only during the stimulation period. Suppossibly this becomes desensitized with time. The first couple of nights after surgery I did notice an increase with seizures but I think it was in response to stress on her body from the surgery, sedatives etc. I too, tried many " alternative " things. All people are different! What works for one is totally wrong for another! And that goes for anything. With as many meds as is on it surprises me that his body is not toxic and experiencing side effects. I am glad I made the descision to have the VNS and I reasoned with myself prior to the surgery, if it did not work for the seizures, the other benefits ie increase in neurotransmitters, increased attention span, short term memory improvements ( specially with temporal lobe seizures). You know, the worst that could happen is that it does not work or it can increase seizures and it gets removed. I hope andf pray that God will let you see things clearly, it is so easy to make decisions from the heart inspecially when it comes to our children. I did, I went on an extreme emotional roller coaster, it was awful! Sincerely, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Joanie, I just read 's story. Maybe you were looking in the wrong place? Kathy > > > > > We have all made it through > > > > > one horror, only to face another. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Found it! Thanks everyone. , I am very touched by your story. But I think is right. We are usually products of our first experience. Mine was a really bad one is all. Just like you I am not angry at anyone. Just PO'd in general. In 1978 I was having state of the art surgery and they were still building the space shuttle. Now no one even pays attention if they launch the damn thing anymore and Harrington rods are out of style. Where have I been? -Joanie > > > > > > We have all made it through > > > > > > one horror, only to face another. > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Dear Joanie, I read where you were inquiring if anyone else was from Long Island. I am from Long Island, but now live in Pennsylvania. Where on LI are u from ? I lived in Elmont for many yrs & graduated from Sewanhaka HS in Floral Park. I graduated from Molloy College ( in Rockville Centre ) & graduated in 76. I would love to touch base with a fellow Long Islander. Sincerely, Diane Brosius Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2008 Report Share Posted September 30, 2008 Hi Pam, I have not read that about chlorella - must be two camps. Mercola recommends it, not that he is the KING, but generally I think he is very dependable. does not have any fillings, except one tiny, tiny one which is not amalgam. Have you ever read anything about French green clay or bentonite for removing toxins? Just wondering. Joanie > > Sorry it took me so long to reply. GSE is gratefruit seed extract - > used for yeast overgrowth. The other thing I have been using is high > dose (10mg 3 x day) Biotin. > > You mentioned using chlorella for metals but my understanding is that > it stirs up metals without effectively removing them. It should not be > used if your son has any amalgam fillings. > > Pam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 Dear Joanie, The best detoxifier is good fats like cod liver oil and Virgin Coconut Oil. A close second is clarified butter. Pretty much you can cure your child with a nutrient dense diet outlined on Candidasupport: As for chlorella, I take liquid chlorella of a morning I have sinus or hung over feeling and I recover within 20 minutes. *Always take with vitamin C!* I take mine in a potion (sorry, Halloween lol) of 6 ounces filtered ozonated tap water, 1 teaspoon baking soda, 1 teaspoon Ascorbic acid and 1 teaspoon of liquid chlorella. I worked up to these doses though. I'd start any newbie on lower doses of maybe 1/4 teaspoon of each. Taking a tablespoon of liquid chlorella can force diarrhea, so even though the bottle says take a tablespoon, I wouldn't. Liquid chlorella gives a similar effect as a tap water enema. Taking clay or bentonite has a similar effect to taking a colonic. That is, when I was sick I had this black stuff impacted in my large intestine. The clay and colonics helped clear it out. I wouldn't think a child would have that problem. Good luck wit it! I'm cured! Nan > Posted by: " joanie46115 " bjwilson@... joanie46115 > Date: Tue Sep 30, 2008 8:16 pm ((PDT)) > Hi Pam, > I have not read that about chlorella - must be two camps. Mercola > recommends it, not that he is the KING, but generally I think he is > very dependable. does not have any fillings, except one tiny, > tiny one which is not amalgam. Have you ever read anything about > French green clay or bentonite for removing toxins? Just wondering. > Joanie > > > > > > > Sorry it took me so long to reply. GSE is gratefruit seed extract - > > used for yeast overgrowth. The other thing I have been using is > high > > dose (10mg 3 x day) Biotin. > > > > You mentioned using chlorella for metals but my understanding is > that > > it stirs up metals without effectively removing them. It should not > be > > used if your son has any amalgam fillings. > > > > Pam > > Quote Link to comment Share on other sites More sharing options...
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