Keto Diet coming up

It requires diligence to be an owner of a blog, I realize....
Diligence is scarce around here, thus infrequent updates.


We are waiting to hear from the dietitian to meet with her and plan Caleb's Ketogenic diet. We are going to start it slowly with a modified ratio, and gradually increase to 4:1(fat: protein/little bit of carb).

When Andy had seen the menu for older kids on Ketogenic diet, he said it doesn't look like a "diet" because those items(like cheese burgers-probably without buns-, tuna salads, chocolate milkshakes...) sound even appealing. But how long do you think you can go without bread or pasta, Andy??


The cutest plumber butt around....

Considering Ketogenic Diet

Last week was an OK week as far as seizures go.
He had average 2-4 clusters a day(worst day was with 6 clusters). I am not really happy with these numbers.


On top of that, his lack of smile concerns me. Does this mean that he regressed to 2 months old stage developmentally? Yesterday, when I put him on his tummy, he really struggled to hold his head up, and failed miserably. I refused to rescue him right away from his misery, hoping he would conjure up his strength and defiantly hold his head up.....but he didn't. I finally picked him up, and he was so upset he cried for a long time.


Maybe I am putting too much expectation on him....maybe I should follow his lead on his development. But at the same time, I am worried that he is not progressing enough due to a lack of some kind of physical therapy. I am going to ask the doctor about it next week.


I have been quite emotional lately. Also, I feel guilty about not being a good enough mom to help Caleb...I think it's a mostly false guilt, and I am trying not to give in to the dark force...

I realize again that I need to really rely on God for EVERYTHING. I need to ask, plead, and request to God, and surrender to his will.


Also, I decided to be thankful for anything worth appreciating, like the fact that Caleb still feeds well, and he is such an amazingly good looking baby :-)

We are considering Ketogenic Diet for Caleb. I was initially scared of it, considering the fact that the diet consists mostly of fat(and some protein), but when I looked at it more closely, it sounds like a good way to achieve seizure control(Many seizure professionals are in favor of the approach especially for children with refractory seizures). I was really hoping Vigabatrin would stop Caleb's seizures but it doesn't look like the case. So, if the doctor says yes, we will probably go for it as soon as he thinks is good. Now is actually a good time to do that because he won't complain about not getting any cookies....he will just have to eat what we give him.(or will he??)

Road ahead

Yesterday, Caleb had 6 clusters of seizures, some of which were longer and more intense. Especially after one clusters, he was crying so hard for a few minutes. He usually grunts, whimpers or yells(mostly when he is hungry), and he doesn't really cry.

So if he cries, it's a big deal. He cried as if he was in pain. Seeing him like that, we were totally stressed and worried.

He is weaning off of Phenobarbatol, and taking a new med, Lamictal, with a very slow increase of the dose to prevent serious side effects. So was it a temporary fluctuation with the new change, or is he just deteriorating?

On top of that, when we had gone to Rona, I noticed a baby, definitely smaller than Caleb, with total head and body control and pointing to things with his little fingers. I couldn't help but compare Caleb with him. It bothered me to see the difference between their developmental advancement.

Apparently, Andy noticed the same thing. He joked, "Well, we have a rag doll baby!" - Caleb is bigger for his age, but doesn't have good muscle tone ever since the seizures started and is floppy when held.

Maybe that baby in the store was older than Caleb(just small), and maybe we should give Caleb some time to catch up from the lost time when he was hospitalized and seizing a lot.

The thing is, in my heart, I was rejecting the possibility that Caleb might be different from other children, and have some challenges and disabilities. Some PMG children can't sit up without support, or walk. Will Caleb be able to walk? Will he be able to sit on his own? We don't know yet. He may, or he may not.

I realized that I need to acknowledge Caleb's unique pace in his development, and should not give into discouragement every time I notice the differences between him and the "neurotypical" kids.

At least, he was better today. He slept a lot, and probably that helped him not to have many seizures. (Apparently, sleep and seizures are closely related) So, I decided not to panic, and wait and see how he is doing for the next few days, before I call the doctor and cry out SOS.