Re: back from initiation

August 26, 2001

: it definitely gets better!!! My daughter Brittany has been on the diet since 1/01 and has been seizure free and med free. This diet has been a miracle for us. That being said, I still, even now , can't bear to look back on the few days we spent in the hospital or the first 2 weeks for that matter. They are very tough days, but everyday it gets a little better and they get a little more accustomed to what they are getting. Things will get better for you and these rough days will be behind you. Keep the faith - we have all been there and will help you anyway we can!

August 26, 2001

: it definitely gets better!!! My daughter Brittany has been on the diet since 1/01 and has been seizure free and med free. This diet has been a miracle for us. That being said, I still, even now , can't bear to look back on the few days we spent in the hospital or the first 2 weeks for that matter. They are very tough days, but everyday it gets a little better and they get a little more accustomed to what they are getting. Things will get better for you and these rough days will be behind you. Keep the faith - we have all been there and will help you anyway we can!

August 26, 2001

,

Yes..... it WILL get better! I have to admit, we didn't have the same problems, though. For one thing, Katera was 4 yrs old when we started and didn't have to drink her cream through a bottle...... I whipped it and sweetened it with stevia and she LOVED it. Plus, we had slowly been working our way up to the diet by increasing fats and cutting carbs for three weeks prior to hospitalization. We started at 3.5:1 and she had her last seizure the first day of the diet. (Since then, in the past 11 months, she has had four seizures.... only with fever). She has had times when she got too ketotic and dehydrated but we managed to pull out of it. I know others have had rough starts and it does usually smooth out in a short time..... hopefully, you'll get more posts with some great hints. Keep him hydrated! Is he drinking plain water? or Keto Koolaid? His body needs time to adjust to the diet.... but he will get used to it.

Patti

back from initiation

Hi all! what a very long week it's been. we spent all week at Miami CH for the initiation. We ran into a lot of bumps. we started Tyler on a 3:1 ratio. the first night he threw up. we weren't sure if it was the fact that he was too ketotic or the cream that made him throw up, so we put him on an oil and butter diet (YUCK!). after 2 days on that he was still too ketotic and he wouldn't drink anything. He gagged everytime a bottle was put in his mouth. So he got dehydrated and the had to put him on the IV. on Thursday (day 4) we were back to square one. we changed his ratio to 2:1 and they added 100 cals. We also decided to go back to the cream, but with lactaid drops added. we absolutely had to be discharged by friday (insurance issues) so our only goal was getting him to eat and keep it down. We're now home and getting him to drink all of the cream is such a struggle. It takes forever, he keeps spitting the bottle out. we have managed to get him to eat everything, but feeding is taking up our whole day. I'm just hoping it gets better at some point. We have no seizure control, but I didn't expect it with this ratio either. in 2 weeks we're going to do a bhb level and we'll probably then adjust him to a 2.5:1 and eventually back to the 3:1. Please tell me it gets better! "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

August 26, 2001

,

Yes..... it WILL get better! I have to admit, we didn't have the same problems, though. For one thing, Katera was 4 yrs old when we started and didn't have to drink her cream through a bottle...... I whipped it and sweetened it with stevia and she LOVED it. Plus, we had slowly been working our way up to the diet by increasing fats and cutting carbs for three weeks prior to hospitalization. We started at 3.5:1 and she had her last seizure the first day of the diet. (Since then, in the past 11 months, she has had four seizures.... only with fever). She has had times when she got too ketotic and dehydrated but we managed to pull out of it. I know others have had rough starts and it does usually smooth out in a short time..... hopefully, you'll get more posts with some great hints. Keep him hydrated! Is he drinking plain water? or Keto Koolaid? His body needs time to adjust to the diet.... but he will get used to it.

Patti

back from initiation

Hi all! what a very long week it's been. we spent all week at Miami CH for the initiation. We ran into a lot of bumps. we started Tyler on a 3:1 ratio. the first night he threw up. we weren't sure if it was the fact that he was too ketotic or the cream that made him throw up, so we put him on an oil and butter diet (YUCK!). after 2 days on that he was still too ketotic and he wouldn't drink anything. He gagged everytime a bottle was put in his mouth. So he got dehydrated and the had to put him on the IV. on Thursday (day 4) we were back to square one. we changed his ratio to 2:1 and they added 100 cals. We also decided to go back to the cream, but with lactaid drops added. we absolutely had to be discharged by friday (insurance issues) so our only goal was getting him to eat and keep it down. We're now home and getting him to drink all of the cream is such a struggle. It takes forever, he keeps spitting the bottle out. we have managed to get him to eat everything, but feeding is taking up our whole day. I'm just hoping it gets better at some point. We have no seizure control, but I didn't expect it with this ratio either. in 2 weeks we're going to do a bhb level and we'll probably then adjust him to a 2.5:1 and eventually back to the 3:1. Please tell me it gets better! "The Ketogenic Diet....a realistic treatment option, NOT just a last resort!" List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe

August 26, 2001

...

Your start sounds JUST like ours, expect our team started Sev out at

4:1 and never said a word about going down. They discharged him

throwing everything up! We ended up in the ER 2 times and the peds

clinic 3 times in the first 3 weeks due to dehydration...he wouldn't

eat or drink anything. Finally, on my own, I refigured his meals at

2:1 and slowly worked my way up 0.1 at a time every three days. It

worked...he began to tolerate the feeds and it had a side benefit. I

found out very early on that Sev is one of the ones who needs to have

lower ketones. We began seeing some control about a week into the

slow rise...but about 3.3:1, his seizures increased. I experiemented

and he doesn't do well at even moderate ketones. It would have taken

much longer to find this out without working my way up! So....maybe

there will be side benefit to having to back down. It does get so

much better....you'll see. When this diet works, it is a thing of

beauty. For Sev, we've never gotten complete control and are having a

tough time right now, but for over a year of very important

developemental time, we were able to have him only on a very low dose

of pheno. When we initated, we were on HIGH doses of three different

meds and he was developing. Keep asking questions and try to

relax....things do get easier! Nan

August 26, 2001