>> Monday, July 25, 2011

Update on seizure activity:

1 minor event yesterday and he was awake most of the day. Hooray! He played and cuddled and took a little nap now and then.

Medication AM:

175mg Lamictal
30 Phenobarbital
3.6 ml Dilantin
.50 Clonazapam

Medication PM:
175mg Lmaictal
60 Phenobarbitol
3.6ml Dilantin
.50 Clonazapam

Update on MTHFR Test

Yep, he has one allele, the one I have: A1298C. I like to share. He will need a Folic Acid and B Vitamin supplement. Will get that from the Hematologist, there is NO WAY he will not be monitored now, especially because:


We have been trying to start the damn Keotgenic Diet for 7 months and one thing or another stopped us. So, we decided to move forward ourselves. With his last Status they moved us up to starting August 8th. That was too long for us, and too long for Bug. With Daddy's background in chemistry, cookery and being his Father's son I was confident we could get him in Ketosis safely. What I DIDN'T count on was his appetite. He has none. It's the medication and it's breaking my heart. We have, literally, been forced to watch him waste away and it's horrible. BUT Daddy bought some Keto Cal before we left the Hospital and Mommy picked up a bunch of Heavy Cream to help him gain some weight and it's helping.

So, for the last week we have been getting about 700 calories a meal in this child. Most of it liquid, with occasional SPAM, Bacon, Sausage and Eggs. Aside from that...he won't take anything. HOWEVER, he certainly likes the Heavy Cream with some Sugar Free Watermelon flavor mixed in. Hooray! It helps that we have a lot of Sugar Free flavorings because of Daddy's Glucose issues.

He also gets a multivitamin (which will be changed to a prescription as soon as we get his new bloodwork tomorrow) and some Senna to help his intestines.

A few days ago we tested him and he was not quite in Ketosis, this morning I tested him and BAM! Ketosis.

Once we ween him off the Dilantin, we are praying his appetite returns and he can eat more protein and fats without having to involve all this liquid. It's easier on the system if he can take it all in himself and digest it. If he doesn't, well...we will deal with that later. But his renal output is great. His bowel movements still suck but we are working on that and he is way to wobbly from the damn Phenobarbital (he CAN'T walk on his own or even sit up unassisted). But, if this Keto helps, we can reduce the Pheno and go from there.

One fat-drenched day at a time.


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What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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