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maya's mom
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« on: January 01, 2007, 08:23:20 AM »

Hi everyone,  I'm new to ths forum and would like some input regarding vns.  My husband and I are planning to start vns therapy for my 3 year old daugther.  She had brain surgery in 2005 and did pretty good for 16 months.  Unfortunately, she starting having seizures again in 7/06.  Her neuro offered to have a resection or vns.  Actually, neither are my  options but I really do need to make a decision.  After being on your posts and hearing about other children dealing with this I'm starting to have second thoughts about it.  I'm doing some research on the keto diet and see if we can try that instead.  I just don't know where to turn anymore, I feel so useless.  We only want the best for her, just like any other parent for their child.  I wish this new year will bring us more happiness than sadness since"03".  She started having seizures at 4 1/2 months.  I have a post on her on the epilespy foundation if you guys want to read about, just type in her name.  I would like to hear from anyone with any information.  Thanks for hearing me out.

Mayra :wallbash:  
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Fay
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« Reply #1 on: January 01, 2007, 11:19:39 AM »

Hello and welcome to the board. I am so sorry to hear about your daughters seizures. It's hard to stand by and watch your seize and not be able to do anything othr than what you are doing. My son's seizures weren't diagnosed until he was 3 years old but we are pretty certain he was having infantile spasms from about 6 months old. We just didn't know it though until the other seizures started at age 3. I felt so guilty for not knowing but learned that this is common. Not all seizures look like the tonic clonic seizures. :) I am a Mom, not a medical doctor!
 Scott was diagnosed with Lennox Gastaut Syndrome and had hundreds of seizures a day every day plus went into nonstop seizures a lot too. It really was a living hell for all of us for years. He is now 17 1/2 years old and the ketogenic diet following the John Hopkins protocol of the ketogenic diet precisely has been our miracle. He has been completely seizure free since Jan.20, 2005 and has been completely seizure and behavior medication free since August 3, 2005. We tried all the meds and med combo's and even had the VNS inplanted in 2000. We believe the VNS caused several llife theatning medical problems that will affect him for the rest of his life that he did not have before it was implanted. We cannot prove it though. It was turned off for over 3 years and we just had it removed (the coils remain implanted wrapped around his vagus nerve) in Oct.
If you are interested in the ketogenic diet there are several links here under the ketogenic diet forum with lots of info on them. I will also be more than glad to help you any way that I can. take care, Fay
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« Reply #2 on: January 01, 2007, 02:56:41 PM »

WELCOME, Maya's mom. I don't have a child with seizures. I'm the one with seizures, but I do have two children ages 16 and 11.
I had a VNS put in and taken out. It made my seizures worse, gave me facial pain, ear pain, and left some nerve damage on my face. I could go on.

I can't even begin to image how difficult it is for you. But, knowing what I know about VNS and having one in me, I wouldn't put one in my child. But, that's my opinion, and mine only. I don
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
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« Reply #3 on: January 02, 2007, 02:52:39 AM »

:wavetowel2: Hi Maya's Mom,

I feel for what you are going through. I'd become good buddies with Fay and try the Keto diet first.

I have the VNS for treatment resistant depression and have great success with it. I strongly beleive that a person receiving the VNS should be 18 or older and have no additional medical problems. For some reson, either for TRD or Epilepsy it seems to work better that way.

Fay can be a valuable resourse to you. She would be glad to talk to you on the phone to answer the thousand questions you must have. She's a real nice Southern Gal!

I wish the best for your daughter.

Labrat    :im_033:  
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Rocking4Epilepsy
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« Reply #4 on: January 02, 2007, 05:08:51 AM »

Hi
Welcome to the forum.
Its good to see you here asking tons of questions.

As you can see not to many children and/or adults have had much luck with the VNS

Everyone is differant and what does not work for one may work wonders for another this is a hard choice you and your hubby will have to make just please reasearch as much as possible and do not let the doctors push you into something you do not want or are not ready for.

hugs  
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maya's mom
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« Reply #5 on: January 02, 2007, 01:00:32 PM »

Thanks u guys for giving me the information that I needed.  I know that this a hard decision to make for anyone, esp. a child.  I do feel that I should wait until she gets a little older, eventhough she has daily seizures.  She's on four meds now and are not helping her.  She does babble alot and sometimes tries to put it into words.  Eventhough she's having seizures, she hasn't really regressed, instead she continues to progress although she tends to fall when she seizes, I have to look into a helmet for her.  I'm suppose to contact her neurosurgeon regarding the vns, but I'm gonna put a hold on that and let her neuro know that I'm  not ready for that yet.  Her meds are to the max already, there's no room to up the dose.  She's going on 4 in March, maybe I can wait a year and see how she does.  So far nothing has help her seizure, maybe for a little while but they tend to veer there way in.  The information I receive from the board and what I've read about Sedona has me really thinking.  How is she doing?  Hope everything is well.  I will keep her in my prayers.  I don't want any regrets on any decision that are made regarding Maya.

Mayra :Thanx:

P.S.  How can I post a pic of my lil girl, so u guys can see what a cutie.

 
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Birdbomb
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« Reply #6 on: January 02, 2007, 01:12:50 PM »

Quote
How can I post a pic of my lil girl, so u guys can see what a cutie.

How to make a post/link or insert image

We are still waiting to hear from Gina. They are staying at the Ronald McDonald house so it may be a few more hours yet.  The RM house has certain rules they have to follow and no telling how crowded it is...
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Rocking4Epilepsy
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« Reply #7 on: January 02, 2007, 01:23:58 PM »

Are you looking to post in a post or make her your icon?
If you need help just yell.

I just redid my puter and deleted the pictures I had of her I helped you with a year or two ago....lol


What meds is she on now?

Have you looked into MINCEP?
www.MINCEP.com
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maya's mom
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« Reply #8 on: January 02, 2007, 06:02:10 PM »

I am looking to post her pic as an icon.  The meds she's on are Keppra, Trileptol, Zonegrand and Felbamate.  I'm gonna check on that website.  Thanks for the tip.

Mayra :Thanx:  
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maya's mom
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« Reply #9 on: January 02, 2007, 06:10:27 PM »

What kind of treatment does MINECEP provides?  I checked their website and it didn't say much about treatment, just for teenagers.

Mayra
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maya's mom
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« Reply #10 on: January 02, 2007, 06:29:23 PM »

Never mind I got to look at it again.

Mayra
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Birdbomb
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« Reply #11 on: January 02, 2007, 07:18:06 PM »

This maybe???

Quote
Children With Very Severe Seizure Disorders

MINCEP has an international reputation for treating children that have not responded to treatment even from outstanding pediatric neurologists and other epilepsy centers. Often, these children have brain damage that causes other handicaps as well. MINCEP brings the very best of modern scientific knowledge to bear on diagnosis and treatment. Working closely with a pediatric rehabilitation hospital, schools, and other appropriate agencies, MINCEP helps parents cope with the challenges that their children face and helps these children maximize the quality of their life. MINCEP has used the ketogenic diet successfully for decades.

http://www.mincep.com/ctcare.htm
 
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
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Electrodes are in me for LIFE!
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« Reply #12 on: January 10, 2007, 12:26:16 PM »

Where can I go to read about the FDA warning regarding vns in children?

Mayra
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« Reply #13 on: January 26, 2007, 06:31:17 PM »

HI-

I think that your daughter is young enough to accept the keto diet. I heard about the diet when Sedona was 7-way to late to change her picky eating habits then.  If you read about Sedona under My Story then you know the hell that she went through with the VNS. FYI- the VNS is not approved for kids under 12 even though it is used in kids under 12.  All the side effects posted by Cyberonics are on an adult plane.

Thank you for asking about Sedona. She is doing as well as can be expected.  She is still happy and that is what is important now.
I have no news to tell at this time. We have an xray on Monday.

Research and talk to parents is my advice. Before you say Yes or no.

Gina
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« Reply #14 on: January 27, 2007, 07:00:10 AM »

Definetely would give the diet a go but make sure that you are under a dietician that is experienced. My daughter is 6 and started the diet when she was 3. Unfortunately we got into a real fine tuning mess on it and didn't get any support.
She responded really well to it but because of mistakes made we could never sustain it.
We are still on it and recently had vns fitted which made her seizures worse. However I think it was turned up too quickly. I think because she was on the diet she was very sensitive to the stimulation.  We did see an improvement almost immediately which our doctors said was too soon and it was when it was turned up that her seizures increased.

Frances  
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« Reply #15 on: January 27, 2007, 04:53:43 PM »

Thanks you guys for the response.  I did hear that the ketogenic does really well for kids, but I'm afraid that since my daugther is a very picky eater it might not work for her.  I've seen the list of foods that she is allowed to eat and she doesn't eat alot of them.  I've decided that we are going to hold off on the vns.  I've been doing alot of research on it and I feel that she is too young for it right now.  I did however noticed that her seizures have decreased some, less frequent then before.  She's doing pretty well so far.  I will however start looking into the ketogenic and do some research about it.  Maybe this can work for her.

Mayra
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« Reply #16 on: January 27, 2007, 07:38:24 PM »

Scott is doing the traditional ketogenic diet following the John Hopkins protocol precisely and you'd be very surprised at the foods that are allowed now. Plus a lot of creative parents have made keto recipes for things like waffles, muffins, cookies and cake that really do look and taste almost exactly like the real thing. Here is a list of his favorite meal plans:
1. pizza casserole- you can use any keto ok foods but Scott likes pepperoni, monzerella cheese, black olives, pineapple,regular  tomato sauce and canola oil or butter (neither of which you can tell is in it). Simply weigh out then melt the butter into the already weighed out tomato sauce until melted, stir well and set aside while you weigh out and stack the pizza toppings except the cheese. Once the pizza toppings are in the bowl put the tomato sauce on top og the pizza toppings then sprinkle the cheese over everything an simply heat in the microwave until the cheese is melted and everything is hot.
2. keto waffle with bacon- finely ground macadamia nuts (i buy the nuts and simply use my cheap, small food chopper to ground them up), eggs, fruit, oil and butter. weigh out each item and set aside. Mix the ground nuts, eggs, fruit and oil together and pour into a waffle iron that has been sprayed with nonstick cooking spray and cook like a regular waffle. When done pour melted butter flavored with Bickfords maple flavoring and sweetener and pour over waffle or better yet melt the butter and pour over waffle and then use Davinci sugar free pancake flavored syrup. serve with Oscar Mayer bacon on the side. This really does look and taste EXACTLY like a real waffle!
3. keto muffin- heavy whipping cream, fruit, raw egg yolk, raw egg white, butter, finely ground macadamia nuts, cream of tartar, vanilla and sweetener. Whip egg white and cream of tartar till stiff and set aside. Mix egg yolk, part of the cream, ground nuts, softened butter, vanilla, sweetner together and fold into egg whites. Gently fold in the fruit and pour batter into a large muffin pan that has been sprayed with nonstick cooking spray. Fill empty muffin cups with water so you don't ruin it. I always make several muffin meals at once and freeze a few for quick meals on the go. Cook at 350 degrees for about 25 to 30 minutes until done. The texture is a tad different but they really do taste and look like a real muffin.
4. cheesecake- if you make the meal plan to include cottage cheese and sour cream it will taste exactly like a real cheesecake without the bottom crust. this is another favorite of Scott's. he likes it with either blueberries or strawberries with whip cream on top.
5. Oscar Mayer beef bologna, Kraft Deli Deluxe American cheese slice, fruit, lettuce with Hidden Valley Ranch bottled salad dressing and oil. Scott rolls the cheese up in the bologna and eats it out of hand. I mix the oil into the dressing before putting it on the salad, You cannot even tell the oil is in the dressing at all.
6. broiled chicken breast, raw tomato and lettuce salad with Ranch dressing.
7. broiled chicken breast that was maranated in italian dressing (any brand is ok), tomato and lettuce salad with italian dressing.
8. Oscar Mayer beef hot dog, regular Heinz ketchup (adding a few grams of oil "makes" more ketchup and you can't see or taste the oil at all), regular dill pickles, pork rinds (takes the place of crunchy potato chips), fruit or veggie (Scott likes raw tomato slices or carrot and celery sticks) and ice cream.
9. keto dessert meal- cream cheese, plain low fat yogurt, sugarfree jello and heavy whipping cream-whipped, fruit and either softened butter or oil. Whip the cream until half whipped. Add the butter or oil and continue whipping until the cream is whipped then beat in the softened cream cheese and mix well. Then mix in the yogurt, jello and fruit. place in fridge until cold. can also freeze.
The rest of the meal plans are normal meals he's always ate! Examples:
1. broiled chicken breast, green beans, lettuce with ranch dressing (Hidden Valley).
2. scrambled egg in butter (no it's not swimming in butter!) with fruit on the side.
3. Bob Evans sausage patties (I make Scott's meal plan so he gets 2 sausage patties), scrambled eggs and fruit.
4. ground beef patty, heinz ketchup, fruit and ice cream. Also has one with cheese slice, dill pickles and tomotoes with the ketchup too.
5. pork chop, veggie or fruit, ice cream or a lettuce salad with either ranch or italian dressing. he has several pork chop meal plans.
And he has a LOT of other meal plans with normal foods that I won't post. He drinks de-caff tea, koolaid and loves his diet, decaf soda's. None of the keto centers restrict the fluids anymore so that's a plus. We use a lot of Davinci sugar free syrups to flavor and sweeten things with and we also use Bickfords flavorings with liquid sweetners too.
The diet really isn't as bad as it sounds! And weighing out an entire meal only takes about the same amount of time it takes to put food on a plate for someone.
Plus, I am right here if you need help. I'll be more than glad to help you any way I can.
Scott started the diet Jan.18, 2005. He had his last seizures (so far!) on Jan. 20, 2005. He has been completely seizure and behavior medication free since August 3, 2005. he was weaned off of Ativan (which he had taken for 13 YEARS!), Diamox, Lamictal, Zonegran, Celexa, Clonidine, Ritalin and Trazadone.
he went from hundreds of seizures a day (he has Lennox Gastaut Syndrome) and being confined to a wheelchair to completely seizure free, medication free and riding a real bike without training wheels. He went from being 22 hours a day g-tube fed by a feeding pump when he started the diet to having the g-tube removed in April 2006. Yes, we DO have the ketogenic diet miracle but we were also given many small miracles besides the ones I just told you about in the process too. Doing the ketogenic diet following the John Hopkins protocol precisely has been extremely easy to do compared to living in the horrible hell we lived in for over 15 years of hundreds of seizures a day and watching him go into nonstop seizures all the time. We would have been thrilled to death and thought we had a miracle if the diet just stopped a few seizures or kept him from going into nonstop seizures quite so much. Trying to describe what it's like to experience this miracle is impossible. I can't talk about it without crying. The feelings are that profound.
Well, I better stop typing! I'm writing a book here! if you have any questions, ask away and I do what I can to help you. take care, Fay

   
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maya's mom
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« Reply #17 on: January 28, 2007, 07:08:28 AM »

Thanks Fay for telling me your story reagarding Scott.  I am so glad he is doing so well with this diet.  I would love to hear more about him and the progress he is making.  I'm sure you're estactic of the results.  I would love to give this a try with my little girl.  I would like to know more about it, which I will when I speak to her neurosurgeon on the 2/06/07.  However, I would like to know if Scott had any side effects while on the diet.  Also, how long did you see any results when started.  My only problem is that my daugther is 3 years old, going on 4 in March and she is a very, very picky eater.  There's times where she won't eat and I would have to give her pediasure to ease my mind that she's getting her necessary nutrients.  I know that children on this diet tend to lose weight, which is a problem also.  She's petitie as it is and I'm afraid that she will get really thin on this diet.  You might think I might be foolish by asking these questions, if they can help her stop having seizures why not go ahead, right.  But I still worry that she won't look healthy and I'm concerned about that.  I know also that there is an issue with height also on this diet and she's not as tall as the other 3 year olds due to the meds that she's on.  Do you have that problem with Scott also?  I am willing to give it a try and see how it works for her.  Please forward a message as soon as you can.

Thanks,

Mayra
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« Reply #18 on: January 28, 2007, 04:35:27 PM »

Hello Mayra. You do have a right to be worried with the diet and yes, some kids lose weight when they first start the diet but it is only because it is hard to know what the correct calories are that the child needs and each child is so different from the rest. It is like the dieticians can go by the height and weight charts and can make a good guess, but they usually have to either go up on the calories or go down if they gain too much weight too fast. Sometimes they get lucky and hit things on the nail but it's rare. This is why it is so important that you pick a very good keto center that knows what they are doing and are willing to do everything needed to make the diet work for your child. If she is underweight to begin with they simply work in extra calories so that she'll slowly gain the needed weight she needs. And if there re days that she won't eat there are several liquid formula's that you can give her. Either the keto milkshake (which she wouldn't even have to drink all of if she doesn't want to), the RCF formula or the popular KetoCal formula.
there are also a lot of kids who insist they aren't hungry but can't turn down an ice cream meal. So there are ways to work around the picky eaters and make the diet work without them even knowing. I am very sneaky with Scott sometimes and it is amazing the things that you can add oil or butter to that he has no idea they are in it. he will tell you he HATES canola oil (even though there is no taste at all to it) and that he HATES butter but yet he gets at least one of these with every meal and he doesn't know it!
Scott lost 21 pounds as a result of the VNS implant and hadn't gained the weight back yet when we started the diet 2 years ago (Jan.18, 2005). Our dietician made the calculations so that he could slowly gain the weight back and hopefully grow in height too. If you go too fast with weight gain (or weight loss) on the diet, it will cause the diet to not work or cause seizures. Here we are 2 years later and he has gained all the weight back plus has gained almost 7 pounds over that. The VNS also caused him to stop growing in height so he didn't grow but less than 1/4 inch from 2 months after having the VNS implanted in Feb 2000 until he had the VNS removed in Oct 2006. He also didn't start puberty until after the VNS was removed. He was 4 feet 9 inches tall the day he had the VNS removed. Today he is an even 5 feet tall and weighes 98.6 pounds so is about almost where he should be for his height now. But still short for an almost 18 year old (will be 18 on May 21st). But he has finally started puberty and his feet has even grown 2 shoe sizes since Oct so I think that he will still grow in height but might not be as tall as he might have been if he hadn't had the VNS implanted.
Yes, we are EXTREMELY happy with our miracle! I honestly don't think he will ever have another seizure!!!! too many things have happened since he had the VNS removed that should have caused at least one seizure if not sent him into nonstop seizures but nothing happened. I am totally convinced now that we really do have the ketogenic diet miracle.
There ARE a few possible side effects but they are extremely rare and usually happen when first starting the diet which is why they admit kids to start the diet. Plus if you do have a side effect they can adjust the diet or the seizure medications and solve the problem immediately. Medications have much worse side effects than the diet does and while on the diet the meds can become toxic so they watch for that very carefully too and adjust the meds as needed too. Of course the goal of the ketogenic diet is to become totally seizure free then become completely seizure medication free too so they keep a very close eye on everything and will reduce and remove meds as soon as possible with the least amount of problems as possible. The 1st time we were on the diet Scott had a horrible time every time we reduced the Depokote and Klonopin but this time on the diet he no problems at all and no withdrawal seizures either when we weaned him off Ativan, Diamox, Lamictal, Zonegran, Celeca, Clonidine, Ritalin or trazadone. It was scary because I kept worrying that he'd go into nonstop seizures every time we lowered the dose but was surprised that nothing happened.
As far as growth goes, some kids do stay smaller until they are off the diet but then qiuckly catch up once they are off the diet. There is a man named Mark (can't remember his last name) that works at Disney in Orlando, Florida who was on the diet for 4 1/2 years. We met him when we were down there (Mrs. Millie Kelly told us to hunt him down to tell him she saiad hey!) and he told us that he was the shortest kid his age the entire time he was on the diet but within 2 years after coming off the diet he had completely caught up with his peers. He is 6 feet 2 inches tall now and he remains totally seizure free and medication free too. So I'm not too worried about Scott's height or weight, especially since he finally started puberty.
There is a book: "The Ketogenic Diet, A Treatment for Children And Others With Epilespy 4th edition by Dr. John Freeman, Dr. Eric Kossoff, Jennifer Freeman and Millicent Kelly from Demos Medical Publishing (phone number 1-800-532-8663) that I very highly reccomend that you get if you are serious about trying the diet. It is written by the keto team at John Hopkins who are considered to be THE experts on the ketogenic diet. The majority of keto centers follow their protocol of the diet and this book is required when you start the diet which would be a plus if you already have it when you start. There is excellent info in it and it very up to date. Just came out Nov. 2006.
I will quote the book " The ketogenic diet also has side effects and complications but far fewer than those of anticonvulsant medications. Because the diet consists of normal foods, no allergic side effects occur. All the side effects or complication of the ketogenic diet are related to the metabolic changes that it induces. Although there may potentionally be very long term problems due to having been on the diet, none have been documented. Although many minor problems may arise during the induction of the diet, we do not find them to be serious side effects and are all easily managed.
Hope this helps and if you have any more questions, please ask away. I'll help any way I can. take care, Fay
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« Reply #19 on: March 12, 2007, 02:33:33 PM »

Hey guys,

I know its been a while since I last posted.  After doing alot of research and talking to parents about vns, I've decided to go ahead with the vns.  Maya was admitted in the hospital on March 5, 2007.  She did very well after surgery, she was able to drink and eat solids the next day.  She went home after 3 days and had to keep a close eye on her that she didn't try to mess with the incision on her neck.  Tomorrow she's getting her stiches removed and they will turn the vns on, on March 22nd.  She continues to have daily seizures while on the meds.  I can't even put her down and walk around the house because she tends to fall after seizing and would really hurt herself.

I want to thank all of you guys for the feedback and the support regarding vns.  Maya is a pretty healthy girl with seizures, she doesn't have any medical problems.  I hope that after they turn it on and it will do some justice on her seizures and hopefully improve (have to keep my fingers crossed).  I couldn't continue seeing her having seizures everyday and not do anything about it.

As for the diet, I did do some research and because she is such a picky eater, alot of the foods on the diet she does not eat.  My neuro also said that the diet wouldn't work because of the kind of seizures that she has.  The other option was to have a resection which she had in 2005, I couldn't see myself having her go through that again.  If she had a resection she would've had a full hemispherectomy, she only has the frontal lobe on the left side.  But it is something that I might have to think about if the vns doesn't work for her.  I decided on this first and give it a try, rather then the resection.

Hope it work!! :goodluck:   She'll be 4 on March 15th. :birthday:

God Bless,

Mayra
 :rolleyes:


 
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« Reply #20 on: March 12, 2007, 05:52:08 PM »

Thank you Myra for stopping in with the update.  I know this was a very difficult decision for you to make.  All of us here hope this works out well for your little girl.  Please keep us posted. And if you have any questions, don't hesitate to ask!

 :bigarmhug:  
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« Reply #21 on: March 15, 2007, 04:32:06 PM »

:Birthday cake:  :birthday:  :Birthday cake:
Happy Birthday Maya!  : party1 :

Glad that the surgery went well and I hope that it helps your little girl.
Please keep us posted as you can and like BB said, if you have any questions, ask away. Take care, Fay
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« Reply #22 on: March 16, 2007, 12:58:00 PM »

So, glad that she did well. Please have a wonderful day togerther on the 15th!
Can't wait to hear how she is doing. We all have our fingers crossed for you.  :D

Elisa
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
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« Reply #23 on: March 25, 2007, 11:00:17 AM »

Maya's vns was activated on March 22nd.  She is doing good.  She still continues to have seizures but not as often as before.  I know it's only been a few day to see any kind of results.  She has to go back next month to get it increased.  She is one tough little girl.  I hope that she continues to do well.

Mayra :)
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« Last Edit: March 25, 2007, 11:01:29 AM by maya's mom » Logged
Birdbomb
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« Reply #24 on: March 28, 2007, 03:35:52 AM »

Thank you for keeping us posted.  I know this was a difficult decision for you.  We all hope and pary this will be a benifit for your child. :goodluck:  
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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