Fay has asked me to let everyone know what is happening to Scott. She will be off-line for an unknown length of time.

Scott has been admitted to the hospital. His bowels are so impacted there is danger of rupture. He has an IV and an NG tube, When it is safe, they will be putting another feeding tube in and also want to check out his heart as his fingers have begun clubbing.

She's pretty much a basket case. With her work schedule and the medical problem this young man has, I will be very surprised if she doesn't end up with another heart attack.

Scott's doctor says his condition is a direct cause from damage to the vagus nerve. VNS threrapy has long reaching side effects.

I'm sorry that it has taken me this long to give an update. I have had my hands full to say the least these past few months. Scott had his VNS generator and all but enough of both wires that are capped removed in Oct 2006. The coils and the capped ends of both wires remain implanted and are still wrapped around his left vagus nerve. The Neurosurgeon that removed the VNS told us that the scar tissue had imbedded the VNS generator and both wires into his chest and neck muscles in such a way that the wires had almost completely pulled his vagus nerve out of the neck muscle sheath and told us all it is a wonder his vagus nerve wasn't ripped in half and were lucky we didn't have worse problems than we did. He also told us a tiny tap on his neck or if he moved his neck a tad more than he was could have ripped the nerve in half. That alone is a very scary thought to me!
Scott's blood pressure became perfectly normal within a few hours of having the VNS removed and he hasn't had another Cerebral Hypoxia attack since the surgery. He also started growing and has finally started puberty too. He had only grown less than 1/4 inch in height the 7 years he had the VNS implanted. He stopped growing about 2 months after it was implanted in Feb 2000. The day he had it removed (Oct 2006) he was 4 feet 6 inches tall and today he is 5 feet 3/4 inches tall. His hormone levels less than one month before it was removed was that of a normal 10 to 12 year old male but now they are those of a 14 year old male in puberty. Thank God as he is 18 years old now and we were getting worried!
On a bad note having the VNS removed caused his asthma and GI problems to become much worse. We tried adjusting the diet and tried different meds for both. We got the asthma under control but still had major problems with the GI problems. On Feb. 3, 2007 Scott went into nonstop seizures without any warning at all after being completely seizure free for exactly 2 years and 13 days. We discovered the next day that I had accidentally given him 9 ketogenic diet meals with sweetened pineapple rather than unsweetened. I read the label but it didn't register in my mind what I had read if that makes sense. All the problems from having the VNS removed had affected the diet and had lowered his seizure threshold. We adjusted the diet several times but he continued to have seizures until several weeks after having the feeding tube placed. He still has reflux but getting the feeding tube placed, several diet changes and adding Nexium has helped a lot. We still have major problems with severe constipation and have just added Eyrthomycin a couple of weeks ago to see if that will help or not. He remains completely seizure medication free and is still on the ketogenic diet. He's been through a lot th past 6 months but am hoping we are on the right path again.
Scott was seen by a heart specialist and he does NOT have any heart problems and they are monitoring his fingers. They are only slightly clubbed and it could be because he has severe asthma. Nothing needs to be done now that they changed his asthma meds and went from inhalers to meds through the nebulizer.
Will post more as we go along.

Wow, Fay. Just... Wow!

Fay, How is Scott doing now. I'll try to give you a call when I get a chance.

Tamara :im_033: ; bee ;

You are so sweet Labrat. Thanks for asking about Scott. He is still having major GI problems and is only a hair away from being in the hospital again. His stomach and bowels are just too slow so causing all sorts of problems. Plus he has developed an allergy to the tape that I use to tape his g-tube (feeding tube) down with so the skin on his stomach is red and raw. Our GI doc changed the tape to the last tape we can try and his skin is still getting worse. This morning I just didn't have the heart to tape him so used a diaper pin and pinned the tubing to his pants which gave his skin a break but now his stoma is raw from the tube moving around too much (rubbing the skin under the feeding tube). i plan to call the GI first thing in the morning. Something has got to give with the GI problems. He can't keep going like this and neither can the rest of us.
I'll try to keep everyone posted.
You are welcome to call anytime! I'd love to chat with you! Hugs, Fay

I'm about to take Page to the orthdontist, later today I will call you.
Bless his heart, Scott is having a terrible time. It sounded like the safety pin was a good idea before the other problem started.
Talk to you later today.

Labrat :im_033: ; bee ;

How is Scott doing these days?

Thanks for asking Target... You caught me off guard so had to look at the date twice to make sure it was todays date before clicking over to read it. The parents section here is always so quiet so I sometimes simply skim over it rather than paying close attention like i do the other sections. I was skimming then noticed todays date... Yes, I'm awake now!!!
Scott still has a few seizures every once in a while. His last cluster was about 3 weeks ago. He's still having major GI problems which we are of course still working on. He has also been slowly losing weight in spite of several calorie increases so after running a few tests it was discovered that during the night his body was "eating" his muscles so we had to go from 10 hour feedings by g-tube (feeding tube) using a feeding pump to 24 hour feedings instead. His stomach works too slow and so does his intestines so by going to the 24 hours feeds his body can use it much better because it's going slowly into him rather than just packing his stomach and intestines full which slows everything down and strains his body. It's hard to explain it so I hope I made sense!
We saw our GI doctor yesterday and he's gained almost 2 pounds in almost a month so am hoping we are on the right path now. The 24 hour feeds are a pain in the rear especially trying to keep him "plugged in" at night (so that the battery doesn't die) and keeping the tubing from getting kinked which sets off a loud beeping noise. We only have one feeding pump so it's kinda scary thinking about whay we'll do if the battery dies. So when he's watching TV or sleeping we have to plug the charger into his pump so it uses electricity instead of using up the battery charge. He needs the battery power when he's at school or when he's not at home.
He hates it because he feels like he's always "plugged in" and tied to the outlet in the wall. Wish we could afford another pump but it's impossible anytime soon. He has the Zevex EnteraLite Infinity feeding pump (best feeding pump in the world) and they are very expensive.
Other than the GI problems and being chained to the wall outlet all the time, he's doing ok. He's excited about Halloween tomorrow even though he can't eat any candy (because he's on the ketogenic diet) and can't make up his mind if he wants to be "Jason" or "a dead man". The teens around here (and my hubby and I too!) have been betting money on his candy. So far my hubby gets it. He's betted $17 so far and is 25 cents higher than one of the neighborhood teens. This years betting on Scott's Halloween candy has been the best year so far because it's always been one of us (a family member who shares the candy with everyone else) that has won the candy but this year it isn't. Hubby is getting kind of upset with the 20 year old neighbor who keeps outbidding him. I think it's really funny because the only reason my hubby wants the candy is to get the Whoppers, Snickers candy bars and the caramels!!! It would be a lot cheaper to go to the dang store and buy himself a bag of each! Plus he'd get more candy too! But then Scott wouldn't get much money either so i guess it's a fun game for all of us. Scott plans to buy himself a new game for his Gameboy with the money. I think he likes Halloween and getting the money for his bag of candy than he does gifts he gets at Christmas. He prob thinks we're all crazy! Scott's 18 years old and really too old to go trick or treating but he only got to go out 3 times all these years because of his seizures (can't exactly go up stairs and such to most houses in a wheelchair while having seizures too) so we are letting him enjoy it while he still looks so young. This is the 2nd year in a row he's been and it's like watching a 4 or 5 year old's excitement of going trick or treating. He missed so much of everyday stuff like this that I'm not ready to expect him to act like a full grown man just yet, especially since he still looks so young.
How are you doing?! I hope that you are doing ok. You haven't been around much lately. Been wondering what you've been up to. I've missed you and glad to see you're still around.

I'm glad to see that Scott is having just a few seizures, but I hate to hear about his GI problem. Looks like they will have to find what's causing it.

I hope everything would work out and he could just enjoy the holidays and eat like everyone else! :So Sad:

Hello Labrat. He does eat 4 small 250 calorie snacks a day and he pretty much picks out what he wants to eat. Most people think the foods on the ketogenic diet are horrible and aren't fit to eat but it's simply not true at all especially if you get creative. He eats pizza, waffles, soup, fruit smoothies, ice cream, etc just like normal teens do. You have to look really hard to see any diffence besides the amount (he gets most of his calories through his feeding tube).
The problem is that Scott's stomach and intestines work too slow plus he has severe reflux and constipation (he poops every 8 to 10 days and gets impacted a lot). So the stuff like protein, carbs, fat, vitamins, minerals, etc doesn't get absorbed the way they should and then when his stomach and intestines are too full whatever is in his stomach spews up into his throat which burns and causes asthma problems, ear and sinus infections, etc. If we could get his GI problem stable we'd be able to get him completely get him seizure free again. We're trying....

How is Scott doing now? Are his GI problems better?[/COLOR]

He seems to be doing better but it's still too early to tell. We changed him from a 10 hour g-tube feeding by a feeding pump to a 20 hour one. Then changed to a 24 hour g-tube feeding by a feeding pump because he wasn't getting enough water -he was beginning to refuse to drink anything except diet, caffiene free Coke. We went from Polycose powder to Benefiber and upped the dose of the Erthomycin. Plus we changed from a Zevex EnteraLite feeding pump to a Zevex Infinity pump.

Heaven's to Betsy!

I don't know what to think now. Took Sarah to the doctor this afternoon while David (my 17 year old) kept an eye on Scott and my Mom (who lives with us and who has moderate Alzheimers). Scott was happily talking about spending Friday night at his best friends house with David when we left. Walked into the house after the appt and there was Scott lying on the sofa having a tonic clonic seizure with david trying his best not to panic. He came out of it before I could get to him but he had to take a 2 hour nap afterwards. It completely wiped him out. Now he has a bad headache. I HATE seizures.

I don't understand a lot about the different kind of seizures but, they all sound scray and horrible. I know it scared David thinking he would have to handle it without you there.

Give Scott and David a hug for me! :rolleyes:

He knows exactly what to do. What scared him was that there was NO warning whatsoever which isn't Scott's normal seizure pattern plus it's been a long time since David has seen Scott have a tonic clonic seizure that was that bad. Usually Scott starts having drop seizures, myoclonic seizures and simple partial seizures in clusters before he has a tonic clonic seizure. He hasn't had a tonic clonic seizure like this (by its self with no other seizures before or after it) since he started the ketogenic diet so don't know if we need to worry yet or not. Like worrying helps any....!
I did email the dietician about it in case she thinks we need to change anything with the diet.

Fay, you have your hands full! Bless your heart!

Dear Faye,
Just writing hoping things are getting better. You do have a full plate. You and yours are in my prayers. When it rains it pours it seems. How are you doing? And how is your family doing? Please write when you have time.
Love,
Bonnie :bigarmhug:

Well, hello Bonnie! We are ok now- I think! We switched Scott back to the Polycose and 2 days later he was seizure free again. Even though the Benefiber was calculated into his diet correctly by his ketogenic diet dietician the Benefiber had something in it that caused the seizures. thank God the seizures stopped and hopefully he won't have any more.
: turkey : We had a wonderful hectic Thanksgiving here at home. Am hoping you had a great Thanksgiving too. Thanks for asking about us. That's very sweet. :angel: I've read your posts so won't make you repeat how you are doing. :im_033:
Hugs, Fay :bigarmhug:

Dear Faye,
I'm glad to hear he (Scott) is now seizure free, and that you had a good Thanksgiving.
Sincerely,
Bonnie :yes2:

Thank you Bonnie. I hope that you had a good Thanksgiving too. This evening and tonight have not been good at all for Scott. His neck keeps popping and it popped twice within minutes of each other and they caused a severe headache plus now his neck hurts. he has scoliosis and has been growing pretty fast lately so am looking forward to our ortho appt the end of Jan. I couldn't get him in any sooner than that.
This neck popping, neck hurting and headaches are beginning to worry me, especially the last month or so. His face turns really red then blue/grayish for about 30 seconds immediately after his neck pops.
Hope you had as good day and hope that tomorrow is a better day for both of us.
Hugs, Fay

I am amazed and impressed after seeing for my self how you handle Scott's diet. It would scare me to death to know if I gave him an ounce too much, it could start endless seizures.

Do you think he will be on the diet the rest of his life?

Dear Fay,

Sorry to hear all the stuff going on with your son. You both have had more than enough to bear. Prayers to Scott & you to.

With all the problems with the VNS etc. I think I would pursue legal action, just to pay for Scott's hospital bills etc. Please care for yourself, even though you are stressed to the max. I think I would pursue a legal action against Cyberonics for all of the medical problems that Scott has had. You have more than enough documentation of the damage that has been done.

Maybe, after things settle down. It is an option I would consider. I hope Scott's condition improves while he is in the hospital.

Take care of yourself, and write when you feel like it. Be gentle with yourself too. I hope you are able to sleep at night, and rest. If you can't I would consider getting something for sleep, so you can. Just until Scott's condition improves. Please take care of yourself as well as Scott. :hbeat:

Sincerely,
Bonnie
:bigarmhug:

Thanks Labrat and Bonnie.

Labrat- it's 1 gram! An ounce seems like a platefull compared to a gram. Everything is weighed to the exact gram. One gram too much can cause him (or anyone on the ketogenic diet) to have a seizure or to go into nonstop seizures without warning.

Bonnie- yes, I am making sure that I get enough sleep and am taking care of myself as best I can. That's extremely important. I start to feel drunk and can't think straight when i allow myself to get too tited or sleepy which prevents me from taking care of Scott.
I cannot sue Cyberonics as Scott was under the age of 12 when he had it implanted. The FDA has approved the vns for those patients 12 years old and over so if something goes wrong, it is considered the parents fault for allowing it to be implanted. Of course docs and Cyberonics doesn't give the full meaning of exactly what "approved only for patients 12 years old and up" really means so it's a very hard slap in the face when something goes wrong and you find out the real meaning of it the hard way. The fact that they even allow it to be implanted into those under 12 years old makes me extremely angry because of this. If it's not approved then they shouldn't be allowing it period. If i had been told the truth and had been shown the manual before Scott had his vns implanted I never would have allowed it to be implanted into him. Their holding back important info like that is simply wrong from the beginning.

Dear Fay,

I totally agree with what you said. To withold information on a device or whatever is wrong; and they should be liable for that alone. It's just like a drug that you take and have a bad reaction, many times drug companies don't reveal some of the negative side effects. They are witholding that negative information, as they don't want their sales of it to suffer no matter what. It is WRONG.

I would find out about it legally, Cyberonics should NOT hide any information on their device that could happen. I would say this is a sales minded thinking. IT's just another big company that wants to sell its device. If I were you, I would investigate this legally. Cyberonics should reveal ALL possible negative information on it's device!! You weren't told, so how are you supposed to know? They should be paying all the hospital bills for you son, as they are VNS related.

At least then, you wouldn't have to worry about the hospital bills. You have a good case to do it. You can always investigate this later, after your son is doing better. I am really angry at them. It is not honest at all what they are doing to patients before and after the VNS is in. All information should be given BEFORE surgery, no matter what age the person is!

Love,
Bonnie
:bigarmhug:

I'm sorry, I meant a gram, I know it isn't 2 tablespoon fulls!
Keep calling when you need to talk.

Here's something that I have been speculating. I don't understand fully what is going on with various degress of epilepsy. But I have read quite a bit about fasting this past year. I began to practice a form of intermittent fasting because my appetite was insane and I began eating too often. I came to the conclusion that by eating too often, I wasn't allowing my body to fully digest. In my mind I was "stockpiling". Since the body didn't fully digest its contents it would just begin storing instead of actually burning the energy. So what I do now is I eat no more than 2 meals a day. My evening meal, better known as dinner, is has a good dose of fats and protein. I won't eat another meal until 2:00 or 3:00 the next day. I am pretty hungry at this time and I eat till my hearts content. An example of what I love to eat when I break my fast is eggs, liver, pan fried celery root/onions and some sliced avocado. Yes, I really do love this. I don't eat liver and eggs because I have to, I eat it cause I love it. Also this is just an example. But the main point that I want to make is that I have a good healthy : dodo : within an hour after I have eaten. I have never been so regular in my life. In addition,after resolving to lose 10 lbs for New Years, not only did I achieve that 10 lbs loss...I exceeded it by losing 17 lbs.

The reason I am sharing this TMI is,I have also read where fasting is sometimes encouraged for kids with epeilepsy to give ketosis a kick ( I think ). I don't know if this might help Scott but I do want to share how it has helped me.

Thanks for sharing that. With the ketogenic diet the body must run only on fat for the energy source. Anything else brings the body out of ketosis is turned into "sugar' and can cause a seizure or nonstop seizures. On the ketogenic diet even 1 gram too much protein will be turned into "sugar".
Also those on the ketogenic diet must eat at least 4 hours apart except at night or their bodies will start eating up muscle simply because there isn't any stored fat and only enough protein and carbs that their body uses. If they don't eat everything then they get too ketotic which is life threatening and sometimes requires hospitalization. On the ketogenic diet for epilespy- which is completely different than the ketogenic diet for weight loss-the body only get the precise grams of protein, fat and carbs per day and not a gram more. Every meal Scott eats has the exact same grams of protein, fat and carbs so he can eat breakfast for supper and even have a dessert meal because allthough all the food is completely different they all contain the exact amount of protein, fat and carbs with the precise grams of each that his body needs.
The ketogenic diet for epilespy is a very complicated diet and is very hard to explain so please forgive me if I managed to confuse you!

Don't worry about confusing me. The only way I can understand is to ask questions myself. Likewise if there is something that I can help with I will share that. Initially I began doing Atkins due to it's weightloss enhancement but that's not why I continue to do this. For me, this diet has reduced various issues that are caused by inflammation. Migraines, hypoglycemia,itchy skin and symptoms of osteoarthritis are all gone. I even have fewer gray hair on my head ( now the hair on my chin is another story <_< ) I don't suffer with other forms but I have family members and friends that do. I want to help them if it is at all possible. Plus I want to help here if at all possible. I was once a certified medical assistant and IV technician so I am knowledgeable of health and medical concerns. Once I get an idea I research it as completely as I can so I can understand the truth. Plus, I want to add that I was not suggesting giving Scott the food that I eat. I was just giving an example of what I do eat personally. I don't measure anything. I don't even count carbs. :yes2: I know that the diet for Scott is much different. I've read quite a bit about it before coming here.

Please don't feel like you are confusing me. I want to understand.