For not having posted in so long its been a crazy summer. About two days before her EEG I crashed my bike and tore up my shoulder. Typing was wee bit difficult there for a while. Also the summer was just insane.
Lets see ... updates in a nutshell.
24 Hour Video EEG: shows they have no idea what is going on. Current official diagnosis. Intractable Idiopathic Epilepsy. And she has not one, not two, not three....get ready for this...four! distinct seizure types. I was in the waiting room at Abigail's neurologist waiting for Melinda to show up with Abigail to discuss the video eeg and look at the finer points of 24 hours in a small room with a 4 year old who has 30+ wires super glued to her head and a 15 foot tether..did I mention my shoulder was separated? I over heard the consult between her doctor and another neurologist. They never mentioned her name but I am pretty sure they were talking about her. He kept asking questions like ..."how old is she?"...."did you try this"..."what did the MRI's show"..."Have you tried combining this med with this med"..."What did the video eeg show?"....I am paraphrasing a bit as I don't speak the necessary Latin to describe some of the things they were talking about. The last words he said to Abigail's Doctor were "I don't know". That makes 5 different Neurologists who have looked at Abigail's records only to get the same answer...I am thinking t-shirts with that printed on it are in order.
Abigail now takes Banzel a recently approved drug for lennox gastaut...she does not have lennox gastaut...but she has LG type seizures, that took several attempts for Abigails neurologist to explain to us as we are already freaked that she might develop that. Another mystery that can't seemed to be explained. With in two weeks of her starting the drug she started speaking more and engaging with the world more. We think the drug is helping with some of the back round seizures that we never see, which in turn is allowing her to speak and have more cognitive ability. There seems to be no side effects which is nice.
July 14th...impaction. Yep the dreaded constipation turned turd plug. We make the calls to the Keto Team and her regular doc...and get the advice to take her to the ER. 10 days of no poo...many caps of miralax...lots of milk of magnesia, and a mental scarring (Melinda and I) suppository later we had nothing. So Melinda and I clear our afternoon and head to the ER.
It would take a small book to detail our 6 hours of fun...here is the brief recap thru snippets of conversation with various nurses and doctors.
Arrival at ER: "Ketogenic Diet? the check in nurse asks? "Oh she must be Autistic" she says.
We explain her condition and explain the diet, including possible side effects of constipation and such, and hand them the piece of paper with everything we just said that the Keto Team at Standford gave us.
"Oh she must be constipated...the poor dear....she really needs fruit, vegetables, and lots of fiber" She says. This is not a good start...."yes" we acknowledge... "but she cannot have any of those things" and we smile nicely pushing the point that we are aware of what is going on and just really need her to poop.
Check in to our room: We make it into our room in fairly short order. Our nurse comes in.
She is very nice and gets Abigail to smile at her. She asks what is going on. We say Abigail has not pooed in 9+ days. "Oh my goodness" she exclaims, "That is not good!" and looks at us like we are ogres. "She really needs fruits and vegetables....and fiber!" she says. Melinda and I exchange looks and give the nurse our best...yes we know smiles. "Perchance you can get the doctor now...please" I ask? ( I don't really say Perchance )
We explain the condition and the diet ....again. And request sedation of some kind since Abigail is really cranky and pissed off that she can't poop. The nurse has never heard of west syndrome or intractable idiopathic epilepsy, but does her best to pretend she understands what is going on. She leaves to get the doctor.
Queue Jeopardy's sound track for 30 minutes.
Doctor arrives...alas we only have to describe the condition because thankfully he has heard of the diet. "Well lets get this little kiddo pooping he says" He orders up a nice oral sedation and a double enema. I ask about the suspension of the oral sedative having sugar? He says it is grape flavored...."oh crap" I think to myself. I ask to have them mix it with out the suspension. The nurse is not smiling anymore.
More Jeopardy sound track 30 minutes: The nurse arrives and in a slightly irritated voice says this is going to be very bitter and that Abigail will probably spit it out. I explain nicely that Abigail already takes about 14 oral syringe fulls of bitter medicine everyday and it won't be an issue. I take the oral syringe from the nurse and Abigail takes the medicine like the trooper she is. We ask how long it is going to take to work and she says 30 to 45 minutes...and that she would be back in 30 minutes and then leaves. Pretty sure the door slammed on her way out. Melinda and I exchange looks along the lines of "What is her problem?" 15 minutes later Abigail can't even sit up straight and is super goofy. The best description is that she was really drunk. It wears off 15 minutes later and she is back to her crabby self. The nurse shows up with a second nurse 25 minutes after that...55 minutes after we gave the dose to Abigail. She is holding two enema bottles and bucket....better to be prepared I guess. Abigail is no longer sedated...Melinda is firmly denying them access to letting them do the enema with out sedation and I am wavering. One look from Melinda and I am back on board...I feel bad for having strayed from the path. Both nurses are saying it will be OK...we are not agreeing with them. Nurse number 2 leaves in a huff muttering something about having a better use of her time. Nurse number 1 is turning red. We mention that the meds wore off 30 minutes ago. "Well why didn't you come get us!!!" she exclaims ...."Excuse me??" I ask. "You never said anything about coming to get you!" I say. Melinda is no longer speaking for fear of what might come out of her mouth as it might involve them summoning security. I force a smile at this point and ask for a moment alone with Melinda to discuss the situation. The nurse leaves...and I take a deep breath. Melinda makes it very clear that we are not doing the procedure with out sedation. I get the message.
Negotiations: I exit the room and quietly shut the door. There is security guard posted outside our room and the room next door...It takes a second to realize the security guard is there for the teenage run away in the next room who is clearly doing her best to piss off everyone in earshot. I smile and nod at the guard. He glowers in return. I make eye contact with the nurse and beckon her to a side hallway. She is doing her best to smile and all the other nurses at the station are staring at us. She stops smiling when I start talking and explain our position on wanting more sedation before the enema. "but they have to special mix the sedation with out the suspension...and...the pharmacy is all the way on the other side of the hospital...and I would have to walk all the way over there ....AGAIN!" Alas we have the reason for why she was cranky
before. "You and your wife need to compromise!" she adds. "You are right?" I say. She seems slightly taken a back by my agreeableness. "My understanding of a compromise is its takes both parties, so why don't you start first" She is puzzled by this. "Why don't you go ask the doctor to come see us so we can have another dose and someone will be back 15 minutes after we give it to her and then we will go from there" her arms cross and all traces of pleasantness have gone. She turn on her heel and stomps off, leaving me in alone in the hallway.
10 minutes later...a 30 second conversation with the doctor..and we have a new order for another dose of the sedative.
Take Two: We got a new nurse...a veritable sweet heart of a women who swoops in and doses Abigail with no problem. She chats nicely with us for a few minutes and promises to be back with the enemas after she warms them up ...and a bucket. 12 minutes later Abigail is singing the ABC's like a drunken sailor and moving her arms to her own internal sound track. The new nurse shows up with another new nurse and they proceed to double enema Abigail in less than 10 seconds. They pop a pull up on her and mention we might want to stand back. I won't gross you out with the details ....but you could have played golf with what came out as it was of equal size and hardness...lets just leave it at that. We cleaned Abigail up and vacate the now Toxic zone we had just created. They hand me a sheaf of papers on the way out and wish us luck.
Its not till later that evening when I am going through the paper work and drinking a nice cold beer that I read the line about how to avoid constipation..."Be sure to feed your child lots of Fruits, Vegetables, and Fiber to avoid constipation in the future!" in big bold letters. I add the document to the shred pile and reach for the second bottle of beer.
Wednesday, September 2, 2009
Wednesday, June 3, 2009
24 Hours of...
Heading in for a 24 Hour Video EEG for Miss A. today. Will update as we progress and have info on how she does. My guess is she will do great...which is what she always does! It was easier when she had this done at 6 months of age...being almost 4 will add an interesting dynamic to it.
Sunday, April 19, 2009
24 hours
We met with A's neurologist last week. Nothing really good or bad came out of the check up. She says the eeg is still showing seizures and there still seems to be more of a focus on the left side. Our next step is to schedule a 24 hour video eeg......24 Hour video eeg...that spells FUN!
The doctor is hoping that this will maybe provide more solid data on where the focus is for the seizures. Then we can make more educated decisions as to maybe referring Abigail to a surgery specialist so they can run more in depth testing with newer imaging technologies. This does not mean we would do surgery but it would allow us to have the deeper testing done. Its any ones guess at this point as to what the heck is going on. Sometime I just feel like we are playing darts...and I suck at darts.
As far as the diet goes... Abigail is doing great. When we lowered the calories to 1170 a day she now eats with little to no issues. I guess you really can live on sausage and cream! All of Abigail's teachers regularly comment on how much more focused she is. Katy, her nanny, regularly comments about how happy and goofy Abigail is. Even though we see 1 to 2 seizures a day she is continuing to improve and develop at a normal rate, she is even catching up in some areas. Her words are clearer and there are more of them. She can swear in context now. I would take the blame for that last one but maybe her birth father was a sailor.....we will never know....actually one of Abigail's favorite songs is the "Pirate Ship" song........hmmmmm interesting.
Abigail has discovered "Flair"...not just a little "Flair" but a lot of "Flair", and she like to flaunt her "Flair". I have pictures that I need to download from the camera and will do so soon. She is often caught wearing 3-4 necklaces and as many bracelets on her wrists and ankles as possible.
The doctor is hoping that this will maybe provide more solid data on where the focus is for the seizures. Then we can make more educated decisions as to maybe referring Abigail to a surgery specialist so they can run more in depth testing with newer imaging technologies. This does not mean we would do surgery but it would allow us to have the deeper testing done. Its any ones guess at this point as to what the heck is going on. Sometime I just feel like we are playing darts...and I suck at darts.
As far as the diet goes... Abigail is doing great. When we lowered the calories to 1170 a day she now eats with little to no issues. I guess you really can live on sausage and cream! All of Abigail's teachers regularly comment on how much more focused she is. Katy, her nanny, regularly comments about how happy and goofy Abigail is. Even though we see 1 to 2 seizures a day she is continuing to improve and develop at a normal rate, she is even catching up in some areas. Her words are clearer and there are more of them. She can swear in context now. I would take the blame for that last one but maybe her birth father was a sailor.....we will never know....actually one of Abigail's favorite songs is the "Pirate Ship" song........hmmmmm interesting.
Abigail has discovered "Flair"...not just a little "Flair" but a lot of "Flair", and she like to flaunt her "Flair". I have pictures that I need to download from the camera and will do so soon. She is often caught wearing 3-4 necklaces and as many bracelets on her wrists and ankles as possible.
Thursday, April 9, 2009
Geezz
Abigail did great at the appointment. She let them stick all the wires to her head and was quiet for the whole thing. And here I was thinking she was going to be a demon. They wanted her sleep deprived so they could see her brain activity while asleep are close to sleep. Abigail's type of Epilepsy occurs most often when she is tired or before and after going to sleep. And since the seizures make her tired its a bitch of a vicious cycle.
She even had a seizure for the test so they could have it on record. I have been through enough of these EEGs I can read the test in real time now. Right as she started her seizure I asked the tech to turn the monitor my way so I could watch. Sure enough the familiar pattern was present across all regions of her brain. I watched it taper off and saw some fairly normal EEG readings with mild blips here and there, not sure what regions the activity was in but there were occasional excessive activity. I am not an expert but it looked better than some of her past EEG's. Not great but not bad either.
I have some pictures of her being really cute while they were affixing all the wires but I am getting errors when I try and upload the images. I will try again later.
She even had a seizure for the test so they could have it on record. I have been through enough of these EEGs I can read the test in real time now. Right as she started her seizure I asked the tech to turn the monitor my way so I could watch. Sure enough the familiar pattern was present across all regions of her brain. I watched it taper off and saw some fairly normal EEG readings with mild blips here and there, not sure what regions the activity was in but there were occasional excessive activity. I am not an expert but it looked better than some of her past EEG's. Not great but not bad either.
I have some pictures of her being really cute while they were affixing all the wires but I am getting errors when I try and upload the images. I will try again later.
Sleep Deprived EEG
What wonderful genius thought this procedure up.
Keep the poor kid up 2 hours past their normal bedtime.
Wake the poor kid up 2 hours early.
Then hope they goto sleep while they adhere 30+ wires to their head.
Melinda has been up with Abigail since 4am and I will be with her at the EEG this morning.
The poor kid is trying to learn how to sleep while sitting upright or leaning against walls at this point. Last night she was practically begging to be allowed to go to sleep. There is some sort of perverse justice in denying her sleep and I am trying not to enjoy it to much.
I have a feeling the car ride to the hospital will involve her window open, music, and lots of "Hey You!! Wake Up!"
Anyways....were off to see the wizard.
Keep the poor kid up 2 hours past their normal bedtime.
Wake the poor kid up 2 hours early.
Then hope they goto sleep while they adhere 30+ wires to their head.
Melinda has been up with Abigail since 4am and I will be with her at the EEG this morning.
The poor kid is trying to learn how to sleep while sitting upright or leaning against walls at this point. Last night she was practically begging to be allowed to go to sleep. There is some sort of perverse justice in denying her sleep and I am trying not to enjoy it to much.
I have a feeling the car ride to the hospital will involve her window open, music, and lots of "Hey You!! Wake Up!"
Anyways....were off to see the wizard.
Tuesday, March 31, 2009
Sorry its been awhile.
Here the nutz and bolts of the last three weeks.
Abigail has started having seizures again...mild at first with one per day. By this last weekend they were up to 4 per day and pretty severe. We also saw regression in alot of her previous less than charming behaviors.
However yesterday she only had one set, she was a little charmer all day today and maybe had one or two really small sets tonight.
All I can say is What the Frak! (if you can use that word on TV then I am going to use it here)
We are at loss as to what the issue is and what could be causing it, only speculation and guesses.
Her prescription writer...sorry neurologist... is at a loss and offered up more drugs for us to try. Such is the joys of Idiopathic Epilepsy. "We don't know" the doctors say "Lets try this drug with this drug and see what happens" they add.
Over all Abigail is great, she continues to improve her language skill set, we lowered her calorie intake and she is hungry at meals, the down and dirty meal battles are at an end for now, and after a week off from school was very excited to see all her friends.
I promise to not go so long with out a post again and the next one will be a little less frustrated in tone :)
Abigail has started having seizures again...mild at first with one per day. By this last weekend they were up to 4 per day and pretty severe. We also saw regression in alot of her previous less than charming behaviors.
However yesterday she only had one set, she was a little charmer all day today and maybe had one or two really small sets tonight.
All I can say is What the Frak! (if you can use that word on TV then I am going to use it here)
We are at loss as to what the issue is and what could be causing it, only speculation and guesses.
Her prescription writer...sorry neurologist... is at a loss and offered up more drugs for us to try. Such is the joys of Idiopathic Epilepsy. "We don't know" the doctors say "Lets try this drug with this drug and see what happens" they add.
Over all Abigail is great, she continues to improve her language skill set, we lowered her calorie intake and she is hungry at meals, the down and dirty meal battles are at an end for now, and after a week off from school was very excited to see all her friends.
I promise to not go so long with out a post again and the next one will be a little less frustrated in tone :)
Friday, March 13, 2009
Errgg
So the Darth Vader voice is no longer working. My Jedi mind tricks have failed. But Alas!! http://www.youtube.com/ to the rescue. Whats that you say Abigail...you want music with dinner. Why let me fire up the old laptop and see what we can find. Since we happen to be sitting at my desk/kitchen table it works out. What would you like to hear Miss A.
"I want Bum Bum" She says with a slight tone of glee. A crooked smile breaks over her face.
"Bum Bum it is" I say...5 seconds later and a quick search for Rhianna's Distrubia on YouTube and we are good to go. The woeful excuses for speakers in my laptop breaking out the latest beats from a chart topping artist. The song ends and we have two bites of food into Abigail who has been dancing and doing elaborate arm movements while pecking at her food.
'What now?" I ask hoping its anything but 'Bum Bum' again, so I can get the taste of that last song out of my head.
"Rock Star!!!" the young Miss A. squeals, waving her arms back in forth while chomping down a bite of keto pancake.
My soul screams for mercy, couldn't it have at least been the harmless melodies of Katy Perry? I can't disappoint Abigail as she reaches for the third to last bite of dinner. I type in 'Pink' and "so what' into the search engine of YouTube. Out spits 20 options of various forms and formats of the songs. I choose the shortest. Abigail once again rocks back and forth in her chair, her arms swinging wildly, two bites of pancake left. She sings along to the chorus..."So what!, Cause I'm a rockstar, and I still have my rock star moves!!!" Abigail really only gets the about every second word, so it came out more like "what, rockstar!, have rock moves!!!" with a mix of mumbling in between. The song ends with one bite left and Abigail's arms stretched over her head....she freezes at the last note and looks at me expectantly. Before I can even ask she blurts out....
"mmmbrlla"
OK that's not to bad...as long as I can find the remixed version with the Jay-Z intro we should be in good shape. I search for 'Rhianna' and 'Umbrella' and in the first three options find the version I want.
We close out dinner with me dancing Abigails now empty plate to the kitchen sink and her following close behind weaving her arms through the air and jumping up and down to the beat....where is a video camera when you need one.
Not a bad evening considering we were both in tears at lunch.
Now if I can only keep the damn lyrics from invading my already loosened sanity so I can sleep.......
"I want Bum Bum" She says with a slight tone of glee. A crooked smile breaks over her face.
"Bum Bum it is" I say...5 seconds later and a quick search for Rhianna's Distrubia on YouTube and we are good to go. The woeful excuses for speakers in my laptop breaking out the latest beats from a chart topping artist. The song ends and we have two bites of food into Abigail who has been dancing and doing elaborate arm movements while pecking at her food.
'What now?" I ask hoping its anything but 'Bum Bum' again, so I can get the taste of that last song out of my head.
"Rock Star!!!" the young Miss A. squeals, waving her arms back in forth while chomping down a bite of keto pancake.
My soul screams for mercy, couldn't it have at least been the harmless melodies of Katy Perry? I can't disappoint Abigail as she reaches for the third to last bite of dinner. I type in 'Pink' and "so what' into the search engine of YouTube. Out spits 20 options of various forms and formats of the songs. I choose the shortest. Abigail once again rocks back and forth in her chair, her arms swinging wildly, two bites of pancake left. She sings along to the chorus..."So what!, Cause I'm a rockstar, and I still have my rock star moves!!!" Abigail really only gets the about every second word, so it came out more like "what, rockstar!, have rock moves!!!" with a mix of mumbling in between. The song ends with one bite left and Abigail's arms stretched over her head....she freezes at the last note and looks at me expectantly. Before I can even ask she blurts out....
"mmmbrlla"
OK that's not to bad...as long as I can find the remixed version with the Jay-Z intro we should be in good shape. I search for 'Rhianna' and 'Umbrella' and in the first three options find the version I want.
We close out dinner with me dancing Abigails now empty plate to the kitchen sink and her following close behind weaving her arms through the air and jumping up and down to the beat....where is a video camera when you need one.
Not a bad evening considering we were both in tears at lunch.
Now if I can only keep the damn lyrics from invading my already loosened sanity so I can sleep.......
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