The Appointment

[Denae]

I don't even know where to start-

First thing Dr. P asked was "hows the diet" I almost broke down and cried just trying to give an awnser. This morning about 7 she had a pretty intense seizure, she was asleep and very post icital when we saw him. The diet is hard and Ri is very unhappy. His response really shocked me, especially after the phone conversation we had when I was ready to quit- He was very understanding and said that it was very hard and yes, we do have to consider Rileys feelings too. He said we needed to take sometime and think about what was best for her. I told him we would continue until we couldn't any longer.

So the next question is if we stop the diet, whats next?

He said he could refer her to Miami or Cleveland for surgical consult, BUT, he didn't feel like (even with the "new" frontal sharp waves) she was a very good surgical canidate, but was an option if we wanted to explore it.

Or we can go back to trying meds. He suggested Felbatol and taking her off of one of the other three she was on. He does want to get her off of the Klonopin IF we can and when we feel comfortable trying it. I want her off the Depakote. He said her level was a little high too, which has been my concern all along. Before when she was on it her level was ok then it shot up and she was toxic, ICU for a week- I don't want to go there again.

We also met with the Keto team. They weighed and measured her and we talked to them about staying on the diet.

We are going to try to stick with the diet and face the "whats next" when we get to that bridge.

[grace]

Well, sounds like they encouraged you and gave you a good team effort and some options but also that they gave you the space you need to figure out a bit what they said and what you "want" to do. Sorry all the options aren't so great.

gotta get the kids to bed!!! will chat tomorrow.

[RathyKay]

I've been thinking about you all day. The kids are out of school this week and Samantha and Claire have been confiscating my computer to play their virtual pets. I've managed to pop in to read here and there, but haven't had enough time to post.

I'm glad he was supportive. So... you're on the new ratio, and it's not much better as far as Riley's happiness? Is the food any better? (Is the preparation any easier on you?) I'm so sorry Riley had a bad seizure this morning. Are they at least fewer and farther between? Or has it been long enough to be sure?

(((Hugs))) I wish I had some answers for you. Just hugs and prayers for you and Riley.

[Denae]

So... you're on the new ratio, and it's not much better as far as Riley's happiness? Is the food any better? (Is the preparation any easier on you?) I'm so sorry Riley had a bad seizure this morning. Are they at least fewer and farther between? Or has it been long enough to be sure?


When I emailed Dr. Parrott a while back and let him know that we couldn't do it any more he moved her from a 4:1 to a 2:1 ratio and said to change her to that ratio for two weeks then we could discontinue the diet. On 2:1 she is allowed more carbohydrate which means more real food and less cream and oil. She was thrilled when she saw that she got eggs, greenbeans and half a cup of applesauce. It is NOT any of the foods she knows and loves though. So it isn't really a whole lot better. She will not drink the cream so she is restricted to meals where I can mix most everything together.

As for the preperation (take out the emotional aspect) and it never was hard to do. Just a matter of measuring stuff out very carefully!~

We have noticed that they are less intense and not as many. Which is a positive. On the down side she is still having them. So we go right back around to the quality of life issue.

I have been reading what I can about felbatol and LGS and doing some soul searching.

[Carly'sMa]

Question: how does she eat the cream? Can it be whipped up and then sort of frozen? Would that make it like a pudding and more palatable? Is that allowed on the diet?

I love whipped cream. I could just eat the whipped cream and skip the ice cream.

[langansmom]

I am sorry you didn't get more direction from your appointment. I do have a friend whose child is doing very well on felbatol- it's a child who failed keto and has the vns. If you want me to hook you up with the dad, just let me know. They are not members here but he and I email often. We bonded on the keto board way back and then he was a great resource for me when we were deciding about the vns. Just let me know!

(((hugs))) to my favorite redhead and to her amazing mom!!

[Denae]

I could have sworn that I posted here a little bit ago???? Man It has been a LOOONG day....

how does she eat the cream? Can it be whipped up and then sort of frozen? Would that make it like a pudding and more palatable? Is that allowed on the diet?


We mix the cream with her eggs, oil and spinach so every bite she takes is her full ratio-in case she doesn't finish. If we use fruit we mix the egg, oil and cream then she gets a side of applesauce. I have tried whipping the cream, making some of the "icecream" recipes and letting her drink it with a little water added and sweetener/ flavoring. Nothign gets it down her.. Thankfully some of her meal plans don't have cream with them- like her hot dog- we just add butter to some apples and she is happy with it.

I have spent most of the day thinking about what to do.

Robert and I have talked about it and we are both leaning toward trying felbatol. We both look at it like this- as Dr. P said, she will most likely always have seizures, she will always need supports so it comes down to the best seizure control and the best quality of life- if a few seizures a week and severely restricted food OR a few more seizures a week and enjoying whatever she likes are BOTH going to have the same outcome then why add the restriction? It would be different if getting seizure control was going to REALLY REALLY improve Rileys cognitive ability and possibly give her the ability to live a normal independent life then it would be different.

[Paul from Australia]

Dear Denae,

We are so sorry to hear the problems that miss Riley is going through. We hate seizures. She needs to be happy and with the diet she is on she is so unhappy.

I wonder if you would consider doing masking with miss Riley. There are folk here who have done masking and seen improvements (us included of course). You would need to get someone to give you professional advice on how to do the masking, but once you know how to do it, it really is very easy, and it is 99.9999% safe. Of course if someone did it incorrectly, by leaving the mask on too long, then that would be a problem. But done correctly it is a completely safe procedure.

The cumulative effect of masking is reduction in seizures and strengthening of the lungs. Ideally the masking would be done in conjunction with stimulation as part of a neurological development program etc.

Why not give it a try for a few months. The very worst that could happen is that Riley's seizure frequency might not decrease, but her lung capacity would almost definitely increase :)

With love,

Paul, Alison and Grant the champ.



So the next question is if we stop the diet, whats next?