Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 , My heart goes out to you. I want Stella to get better so badly! I'm glad you are sticking to the klonipin and phenobarbitol weans, too. It has got to be scary, though, because she is struggling so much already, and the weans can make things worse. But perhaps these seizures are from a weaning process you have already started. I find salmon the easiest fish to cook. Choose a thin fillet (like the tail section) Marinate it in a little olive oil and salt for 30 minutes or more (or don't bother with the marinade). Then grill it on high, skin side down for maybe 7 to 9 minutes. Cut into it with the side of a fork. If it is a consistant light pink color all the way through, it is done. If the middle is somewhat translucent and raw looking, it is not done. Discard the charred skin and weigh. Salmon cooks well under the broiler, too. If it is not wild salmon, make sure it is from an approved fish farm. I forget the bad chemical that is found in some salmon farms. I don't know if any of my other posts to you have gotten through. We are having computer problems again. But, I am really really pulling for Stella. Gretchen > Okay stella was back again in ICU due to another status seizure, we > went in Wed for our routine visit with the neuro surgeon to check the > vns, that am she had been seizing constantly with grand mals and > myoclonics and something similiar to absense. They dedicided to send > us to the ER to admit her. After ativan, phenobarb and dilantin they > stopped the seizure, they had time to hook her up to an emergency eeg > to see the status, she was just unresponsive, but not an absence, they > call it a staring spell which is generalized on the eeg. I was so > frustrated because this was happening non stop the week prior when we > first ended up in ICU, they just didn't take the severity of her > situation serious enough. Her epi was the attending this week so he > saw it all and immediately saw she was in status. To make a long story > really short, she was in for 4 days, sent home with an addition of > phenobarbital while the klonopin is weaned over a month, then another > couple weeks to wean the phenobarbital. My daughter is a drunken > emotional mess. She cannot control her emotions, her wild body > movements. > The vns was turned on in ICU, it has been upped once, her voice sounds > like it is purring now when it is active. she coughs when it first is > going off and rubs her throat, so I know it is causing her some > discomfort. > We have always done the diet 100% vegetarian but now I am going to try > to add some fish to her diet. Does anyone use fish at all? And since > i've never cooked with it before, how do you cook it etc and which fish > do you use, which is better etc. Any info I'd really appreciate. > Especially menu ideas. > I'm not throwing in the towel on the diet yet, since her last BHB was > the highest ever with the added flax, but if we don't see any positive > results after the klonopin and phenobarbital are weaned I just don't > know what to do. It's really scary that all we have is the hope of the > VNS left. > Well finally she is home and so drugged that she's not seizing, I guess > that's something, finally her brain is getting a rest. The docs told > me if she was like what they saw then she was probally in and out of > status for a week long. I really hate seizures!!! > > amanda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 Gretchen, thank you for your salmon tips, I have not made any meal plans yet, but now atleast I know how to cook it. I'm a little nervous to do this my first time. I may wait until I get back from Mexico, I leave Friday for 10days for a job, I am so nervous to leave STella in the condition she is in. The only reassuring thing is her neuro knows i'm going and if she seizes again he'll admit her for the entire time I'm gone to watch over her. Yikes!!! Thanks for thinking of us, it sure is wonderful to have friends, even though they are faceless. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. On Lamictal, weaned her off the epam and Diamox. VNS as of 11/19/04. Big sister Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 If Stella has never tried fish before I would be very careful with salmon.It has strong taste and smell comparing to other fish and she might refuse to eat it.ph never liked salmon before keto diet and I cooked it once on keto diet.He had upset stomach 2-3 hours he ate salmon and also had a seizure.it could be coincidence but I have never cooked salmon for him since then.Just wanted to warn you Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 , I also found out on the net that salmon due to its mercury content should only be consumed 1-2 times a month. Tuna, according to this guide had less mercury. I did a bunch of research when the mercury in flu shots came up in some post's last week. , mom to Ethan 2/2003-4/2004 Re: back in ICU: If Stella has never tried fish before I would be very careful with salmon.It has strong taste and smell comparing to other fish and she might refuse to eat it.ph never liked salmon before keto diet and I cooked it once on keto diet.He had upset stomach 2-3 hours he ate salmon and also had a seizure.it could be coincidence but I have never cooked salmon for him since then.Just wanted to warn you Natasha,mom to 2 years old ph,suspected SMEI/Dravet's syndrome " 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 , I'm so glad you get to go to Mexico for 10 days, even if it is for a job. I know it will be difficult to be away, but on the other hand, maybe you can have a little time to restore and recover from all you have been through. I love Mexico. We will all be thinking of Stella, too. I'm glad you have back up plans in case Stella starts seizing again. That should give you peace of mind. Gretchen > Gretchen, > thank you for your salmon tips, I have not made any meal plans yet, but now > atleast I know how to cook it. I'm a little nervous to do this my first > time. I may wait until I get back from Mexico, I leave Friday for 10days > for a job, I am so nervous to leave STella in the condition she is in. The > only reassuring thing is her neuro knows i'm going and if she seizes again > he'll admit her for the entire time I'm gone to watch over her. Yikes!!! > Thanks for thinking of us, it sure is wonderful to have friends, even though > they are faceless. > > > -- > -mom to Stella, 5years old, started keto diet May 10th 2004 still > waiting to be seizure free. On Lamictal, weaned her off the epam and > Diamox. VNS as of 11/19/04. Big sister Anisa is almost 10 and a happy > healthy girl. Quote Link to comment Share on other sites More sharing options...
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