>> 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.



>> Friday, July 22, 2011

This child, this beautiful, happy child had three seizures yesterday. Serious. WTF? He is on so many strong medications and we are establishing the Modified Atkins with some Keto in it and STILL...3?

One was confirmed and two were...I THINKS.

Today he has had one. Already. One Tonic that was 5 seconds.

Don't mind saying: this sucks and I am depressed as hell. Time to car shop.


50 Clonazepam 2x
30 Phenobarbital 2x
150mg Lamictal 2x
3.6 ml Dilantin 2x

And then last night we stepped it up:

60 Phenobarbital
175Mg Lamictal

And STILL a seizure this morning an hour after:

50 Clonazepam
60 Phenobarbital
175mg Lamictal
3.6 Dilantin

He is sleeping now. I'm not. I am watching him and being pissed that I haven't received a call back from the Neuro's office. Really? How difficult is it to just give me the damn MTHFR results? Screaming seems so...not useful.


Another Status

>> Wednesday, July 13, 2011

We had suspected Bug was in Status for a few weeks, but after a call to the Head Doctor, it was suggested he was just getting used to the medication increase. I knew better but still...you have to respect your Doctor and give them the benefit of over a decade of schooling and twice as much practical experience. But, hey, they don't know my child like I do.

So, we waited. In the meantime, I did more research. I have, somewhat recently, been told I have a genetic mutation called MTHFR. Not a really big deal since I have only ONE mutation HOWEVER, I learned that two mutations, in different areas, can cause a lot of the problems we have seen in our family lately. Some minor issues,and some bigger issues, but all possibly explained by the lack of treatment over time in even ONE mutation. I decided to get a Hematologist involved. Easier said than done. I called PCMC Hematology and was informed I needed a referral. We don't just allow 'anyone' to get an appointment. M'kay. NOT what it says on your website but I have gotten my back up and then sucked it up and gotten what he needed so...I'll play along.

In the meantime, we took Bug to the ER in American Fork for his recently chronic constipation, because Primary Children's resources are better used elsewhere (no joke, even though I said I think he is in Status). They 'cleaned him out' and we headed home. I asked, and received, a referral to the PCMC Hematology Department. And the next day I called.

And the next day I was told that the Doctor HIMSELF had to call. I blanched and informed the 'lady' that I wasn't told that and I have the prescription for a Hematologist consult in my hand, my insurance doesn't require the referral but I got one and he needs it. She said: I don't know who told you that but have his Primary Care Physician call. It's not a big deal. I laughed: Oh yes it is. You see, I love his PCP but his staff...well...anytime I ask for a referral they give me grief. Took me 30 minutes of talking and repeating to get the referral to the ENT. And THIS one is just to rule out a genetic marker. To which I heard: Well, why do you think he needs an Oncologist anyway? Seriously? Did I not SAY HEMATOLOGIST a few times? I told her about my test being positive and she said: I HAVE NEVER HEARD OF THAT. So I hung up.

I called his PCP, who was on vacation, and they gave me an appointment for another Doc in his office. We went in and I am glad to say, we now have a new PCP. He knew all about MTHFR and was fascinated with his Epilepsy. I may be in love. He called the referral in and agreed Bug was most likely in Status. SO...up to PCMC.

I called Daddy en route and he wanted to know if he should book a flight, since he was in San Francisco. With the speed at which PCMC moves with Bug, I told him to wait. I was correct. I told the Doctor: I think he is in Status and Ativan DOES NOT WORK. He smiled and said: OK, I will tell the Neuro's but it IS their call. And then, I said for the first time that trip: Just wanted to let you know, the *Neurologist* needs to TELL me about the treatment plan and not just pawn it off on you. YOU should not have to deal with me and what I know does and does not work. I appreciate you seeing us so rapidly. He smiled and said: I understand and thank you for understanding my position in this. I LOVE the ER Docs and the Pediatricians there. It took several hours to get him hooked to an EEG, in the sleep lab, since all the portables where being used, and IMMEDIATELY we knew he was in Status. BOTH of the tech's knew Bug. Nice.

I literally looked at the EEG for 10 seconds and told Bug: Looks like you bought the golden ticket for at least one night's stay.

He was disconnected from the EEG (leads still attached) and we went back to the ER. The nurse walked in with....Ativan. I looked at her and said: Love ya, don't give him that. It is a waste of time. Repeating: NOT aimed at you, tell the Neurologist to come talk to me first. She smiled and said: Will do.

A little bit later, in walks one of the Neuro's. We knew each other. Pleasantries were exchanged and then I reminded her that Ativan does not work. She had other ideas. She informed me that, "in his medical record", it states it has. I countered: "Uh, no it doesn't. It says PHENOBARBITAL does." I had received his ENTIRE medical record a few days prior and had been reading through it all just that morning...so...bring it on. She reiterated that in her memory Ativan worked. Again, I said: "Ativan is ALWAYS administered and always cleans it up 'a little' but only PHENOBARBITAL brings him out". She said: Well, let's try it.

I gave in with a shrug and a giggle, because yelling would upset everyone, and he was given Ativan. It made him loopy. It DID NOT bring him out. A little while later, they gave him Phenobarbital and moved him into a room.

At least it took less than 7 hours.

And we are back in the NTU.


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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