Wednesday, April 27, 2005

Jenelle and Zeesee!

Jenelle & therapy dog "Zeesee" Posted by Hello

For those who may have missed it earlier, here is the photo of the therapy dog that visited Jenelle in the hospital. Cute, huh?

Tuesday, April 26, 2005

Just a quick update...

Just a quick update to let everyone know we are still surviving! Jenelle continues to show improvement in her awareness as well as with her seizures! A couple of things we have noticed include that Jenelle does not really suck her thumb as much as she used to, and that her complexion is so much better - we are seeing less redness in her face, hands and feet. Something must be better!

We have encountered some problems with Jenelle eating all of her food. Not sure if she really hates the taste of things, or if she is too "ketotic". Sometimes when someone has too many ketones in their body, they do not want to eat. We are going to tweak her diet a little and continue to add more carbs to see if lowering her ketone level helps her appetite. I'm also going to play with different foods to see if that helps as well. So far though, the diet seems to be helping!

Here are some photos I took last week. One photo is from the day before we went to UCLA (we were celebrating Aunt Nicki's birthday - hence the birthday hat on Jenelle) and there is one of Jenelle from this past Sunday. You will see a noticeable difference!

Jenelle before the diet... Posted by Hello

Jenelle's first Keto Meal (1/2 calorie egg nog) Posted by Hello

Jenelle's 2nd Keto Meal (not getting any easier!) Posted by Hello

A typical meal on the Ketogenic Diet for Jenelle (jarred baby food of pureed beef, green beans, mayo & olive oil) Posted by Hello

Jenelle after starting the Diet Posted by Hello

We have our follow up on Thursday, so I'll keep you posted after that. Thanks for the continued prayers.

Sunday, April 24, 2005

Adjusting to a new routine!

Well, we’ve been home since Thursday night, and I’m still exhausted. The only thing that comes to mind when I try to describe this adjustment is to compare it to bringing home a new born baby – new bottles to buy, formula to make, meals to make, feedings at a certain time, However, we obviously are getting more sleep as compared to a newborn! It took me 5 hours on Friday to make meals to last through Sunday. I’m sure this will get easier with time, and after all in my job I get paid to be organized! I’ll find a new system soon.

Jenelle is doing well, but we are still seeing some seizures, although we’re seeing fewer than before. I think I’ve figured out the source of her “unexplained” fever in the hospital. Upon admission, an IV line was started in Jenelle’s foot. Her foot was then taped to a stiff pad to immobilize the area where the IV line was started. When they took out the IV line on Thursday, and took off the tape, poor Jenelle had open sores on her foot because it had been taped too tightly. We are using Neosporin to help the infection, and it is healing nicely. We are still seeing the subtle “different awareness” in her. I actually think she was watching TV yesterday. She definitely responds to hearing her name and hearing our voices. It’s nice to see.

Jack did really well this past week while Mommy & Jenelle were gone. Brett really worked hard to keep his routine as normal as possible. On Thursday night, Jack asked me where I’d been with Jenelle. I explained that she was in the hospital starting her “magic diet”, and Jack then asked, “Does this mean you fixed her broken brain?” We hope so! It is starting to get more difficult to feed Jenelle as she really does not like her new food. I’m getting more forceful with her and often tell her to “open” her mouth. Yesterday, Jack suggested I say “Abre” instead, which is open in Spanish! He is so smart! However, Spanish didn’t work either – there I times I literally pry her mouth open and shove the food down! We’ll soon figure out what works best.

Jenelle will go to school tomorrow and hopefully the change will help her new routine. We’ll be going back to UCLA on Thursday for a follow up, and to CHOC on Friday to follow up with the GI doctor. Busy week! Thanks for the continued prayers – I’ll keep you posted!

Thursday, April 21, 2005

We are HOME!

I am sorry it took so long to send an update today, but the short story is that we are now home! Brett was wondering why I sent so many updates from the hospital – I guess I was bored and/or it was a way to pass time instead of trying to remember my Spanish! ;) It also helps to put into words all that I’ve learned, to help me cope and remember.

Well, Jenelle’s fever broke during the night, and all the tests they ran searching for a reason for the fever came out fine! I won’t expand on the difficulty they encountered trying to get a urine sample from Jenelle at midnight last night as you may remember how I’ve had difficulties doing this on my own! We had another long night, but not as bad as our first.

All of our “Keto Education” was finished today and they nurse team said we could go home anytime Jenelle was stable. Her heart rate was still elevated, and her bi-carb level was a little low, but ultimately Dr. Shields and his team decided since there was no infection causing the fever, all the other problems could be managed from home, so we were discharged. We are to see him next week, and then again three weeks after that. Of course, we got released around 1:00, but it took until 3:30 to get us out of there, 4:00 to get on the freeway (just in time for traffic!) and we finally got home and unpacked around 6:00.

So, we are home, Jenelle is on the diet, and she is still having seizures. We need to give all of it more time, but I am confident she is in great hands as Dr. Shields is very concerned about other problems, and is watching her closely, even if from home. I now need to get “organized” and figure out a plan to prepare meals for daycare and school, as well as prepare earthquake supplies for home, school and daycare.

Thank you for the continued prayers. I most likely won’t be giving updates as frequently now that we are home and I have Angels games to distract me! ;) But of course, I’ll continue to keep you posted!

Wednesday, April 20, 2005

Ketogenic Diet - Day 3

Jenelle took a turn for the worst today and spiked a fever of 101 and, we're not really sure why! We did a chest x-ray to rule out infection from aspirating food in her lungs, ear infection and UTI. I haven't seen the results of the x-ray, and we're still trying to get urine! Jenelle is lethargic at times, but then very alert in her new "different" alertness we started to notice today (which is good!) I even thought I saw a hint of a smile tonight! All of the teaching for the diet is done, they are just waiting for Jenelle to stabilize before we can get released. They are shooting for Friday, but it may be Sunday. As the Ketogenic Team Nurses said, "At least now we are getting some hands on training on how to handle sickness!" I'm relieved this is happening while she is still here, and not at home being we're an hour away!

All of Jenelle's medications have now been switched to pill form. She really doesn't like the taste of bitter pills, but it is amazing how many carbs are in liquid form. Not that I'm bragging (and those who have known me all my life will know), I've never been on a diet, so all this label reading and weighing of food is very new to me! Its kind of like High School Chemistry all over again!

We have a new roommate tonight. A sweet little 5 year old girl who had surgery today and her parents from Chino Hills. I hadn't mentioned it but our previous roommate was a 16 year old boy going through Chemo. He was very nice and quiet, but liked to watch lots of TV… In Spanish! His parents rarely visited and spoke very little English. I figure if the kid is 16 and going through Chemo alone, he deserves to monopolize the TV - I can deal with it and be the adult! However, it is nice to be able to watch news now in English! I heard there was a new Pope chosen yesterday, but wasn't sure of the details because my Spanish is rusty! ;) Oh well - hopefully we'll get released together with our new roommate!

Thanks for all the prayers - please keep them coming that this infection and fever is nothing serious! I'll keep you posted!

Jenelle is taking well to the diet, but...

We saw the Neuro team today and Dr. Shields. Jenelle has really taken well to the diet and is tolerating the foods however, her lab results are concerning so we will be here through Friday, and they "hope" to get us out by the weekend. Apparently, Jenelle's bi carb level is still too low for what they were hoping to see, and her cholesterol is too high -and they have no idea why this is because her cholesterol was fine last week. I did speak too soon on the improved seizures, she has had 6 today so far, but still they are no worse than normal, so that is good! She was fairly alert this morning and her alertness is different and encouraging. However, her alertness seems to come and go, so we aren't too sure her body isn't reacting chemically. Better to be safe and stay here a few days more for monitoring than get home and wonder if we need to drive back!

Many of you have emailed me with questions about seizure improvement. We could see improvement very quickly, or it could take as long as 3 months to see if the diet is making a difference. Right now, they have not switched Jenelle's meds over to a "low carb" formula, so she is getting extra carbs that she shouldn't, even though she is in Ketosis (meaning, her body is not burning fat yet, which is the goal.) We'll make that change tonight, and hope it makes a difference.

Thanks for the continued prayers - I'll keep you posted!

Ketogenic Diet - Night 2

Not much to report - we finally got some sleep last night! Jenelle woke once around 4:00 a.m. acting hungry and frustrated, but went back to sleep after some cuddling with Mom. I can't imagine what she must be thinking - she was healthy coming in here, why are they treating her like this? She had blood drawn at 6:00 a.m. and slept right through it! The last seizure I saw was around 6:30 last night - that is hopeful! (and now I've probably jinxed it!)

I was planning to feed her at 7:30, but decided to let the Princess get some more sleep. With the nurse "Shift Change", she'll be waking up soon. Have a great day and I'll update when I can!

Tuesday, April 19, 2005

Ketogenic Diet - Day 2

This afternoon we had some visitors and I got to make Jenelle's next 4 meals all on my own! Father Reese, the priest who married us at St. Paul's in Tustin stopped by for a visit and to pray for Jenelle. He had a meeting in West LA and was in the area. We didn't get the chance to go to church on Sunday, so it made me feel better that he could pray for her. Jenelle is a regular during the "healing" part of the prayer in our Sunday services, when we do make it to church.

Later in the afternoon, a cute little dog named "Zeesee" came to visit Jenelle and sit with her in her crib - courtesy of patient services. Don't they look alike?

Jenelle & therapy dog "Zeesee" Posted by Hello

To give you an idea, Jenelle's meal this evening for dinner was 39 grams of Stage 1 beef (jarred baby food), 35 grams of carrots (again, Stage 2 baby food), 10 grams of "fat" (mayo) and 5 grams of olive oil, all mixed together. With that, she got to have 35 grams of "heavy" whipping cream mixed in with her 3.5 ounces of Ketocal formula, for 4 ounces total. Small portions to say the least! The nurse explained that it may take Jenelle a good 2 weeks to adjust to the smaller portions, but calorie and fat content wise, she is getting enough. She can have an unlimited amount of water (with zero calorie flavoring added) and must get at least 32 ounces of fluids a day. And of course, she can have as much of her "thumb" as she wants since it has no calories! ;)

Jenelle is tolerating the food well, but is still acting hungry, and gets quite upset at times when Mommy tries to give her water instead of her usual milk. If her blood sugar levels remain stable and her ketone level stays up, we may get to leave late tomorrow after more instruction during the day. She is still having seizures, however they are no more than usual, and no less. That too could take a few weeks to show a difference. By the way - they found me a "pull out" bed for this evening! YAY! Brett has been driving back and forth and is staying with Jack this evening. Jack spent the previous night with Grandma, who also took him to Disneyland today! He is having more fun than any of us!

Thank you for the continued prayers - we truly appreciate it!

Ketogenic Diet - Night 1 - Rough Start!

Well, we had a rough first night and literally woke every hour on the hour. Part of it is the new surroundings (hospital noises and our neighbor's monitor going off ever hour!) the other part is that Jenelle was very hungry. I am sleeping in a chair with another chair to prop my feet, so that didn't help things. I didn't explain the egg nog well - Jenelle was only allowed 2 ounces at a time, so in total, she got 6 ounces over a 6 hour period, and nothing for the rest of the night. Like I said, she did not sleep well and was so frustrated she wouldn't suck her thumb. All that helped was lying on Mommy's chest. We got through it though!

This morning we took our first ketone level and found that Jenelle actually had too many ketones. She had a little vomiting last night as well, and they believe that is from the increase of ketones. Because of this, she got one ounce of cranberry juice, and that did the trick on lowering the ketones. This is surely an exact science. So far, no other problems like low blood sugar, etc.

Brett and I had our first lesson this morning and we're choosing the "easy" course in that part of Jenelle's meals will be supplemented with a formula called "Ketocal", and the rest of her meals will be prepared with jarred baby food. Jenelle is pretty alert right now and enjoying the special time with Mom and Dad. Our next "lesson" is at 1:00, so I have to run. Will try to update when I can this evening. Thanks for the continued prayers!

Monday, April 18, 2005

Ketogenic Diet - Day 1

Thank you all for the prayers and positive thoughts this weekend, after waiting 3 1/2 hours, we got a bed at UCLA today. I may have mentioned this, but because of Jenelle's new diagnosis of Metabolic Acidosis, the team here at UCLA is approaching the Diet differently, and Jenelle did not need to "fast". Which was a good thing because Jenelle has been getting pretty hysterical these days if we are too late with her meals! She has already had her first "keto" meal of eggnog and flavored water. She'll get another serving around 8:00 p.m., and again at 10:00 p.m. if she is still awake. We're going to keep this up and will hopefully start real "keto" food later tomorrow.

Thanks for keeping us in your thoughts and prayers. I'll update again if I can tomorrow! We should be here until at least Thursday.

Friday, April 15, 2005

UCLA here we come... Again...

As you know, we met with Dr. John Menkes on Thursday afternoon. Wednesday evening, I decided to “Google” the good doctor to learn more about him. We had heard many things, especially that “he wrote the book on metabolic disease”- come to find out, he really did write the textbook "Child Neurology" (now in its 6th edition) as well as a recent novel called “The Angry Puppet Syndrome” I was particularly fond of a review I found “” of his new novel by someone with the handle “bookofjoe” who wrote the following review:

“Menkes is a pediatric neurologist at UCLA, famous for his discovery of Maple Syrup Urine Disease (you can guess the main sign), also known as Menkes' Disease or Menkes' Syndrome.

I was in his clinic one afternoon during my peds rotation at UCLA Med School, where some kid whose disease was undiagnosable was brought in. Menkes walked into the room with all of us med students, interns, and residents behind him, looked at the kid, asked the mother a few questions, wiggled the kid's finger and wrists, said, "this is a case of so-and-so," and walked out of the room.

We all went and looked up the disease, and damned if the kid didn't fit the picture perfectly. Something like 17 cases reported in the world literature up to that time. The classic absent minded-professor, Menkes seemed a little baffled and bewildered, with these thick glasses and a scraggly beard, but that's a big-time brain in there.”

As of Wednesday evening, Brett and I were convinced we’d found our “Dr. House!” I wish it ended that way, but unfortunately, we left Dr. Menkes office on Thursday with Jenelle having stumped yet another one of the world’s top Neurologists. Our visit was invaluable as he really took his time to review her medical records and MRI, however he said there was really no diagnosis he felt she had. He did suggest some new genetic tests we could run, and pretty much agreed with everything Dr. Shields has been saying about Jenelle. He believes that Jenelle’s brain has “developed” abnormally, which of course is causing her problems, but why we may never know. Dr. Menkes felt the Ketogenic Diet was our best next step.

Perhaps it’s my optimistic attitude and positive outlook on life, but I truly feel that this may be for the best. As long as there is no diagnosis that limits her life or limits her development, then really there should be nothing holding her back once we control her seizures! Without a definite diagnosis, her potential remains unlimited!

Today I took Jenelle to CHOC for her upper GI and Swallow Study. The Swallow Study results were good (we will have to wait for the GI results) – Jenelle is not aspirating when she drinks, however, as the test went forward and they checked how she swallows food, I heard the Occupational Therapist say, “Wow, that is really strange!” Apparently Jenelle does not swallow her food unless it is followed by a bottle, and/or there is too much food in her mouth to force it down! This most likely is a sensory issue that can be improved with more therapy. But, it is dangerous in that she could aspirate on her food. The OT was surprised because she said that usually a child with a good “suck and swallow” like Jenelle’s with the bottle of milk, should also know how to swallow food – even pureed food! OK, so should it really surprise me anymore when medical people tell me Jenelle is strange?

I spoke with UCLA this afternoon and we are on for Monday – however we still won’t know if a bed is available until we get there. Please keep us in your thoughts and prayers next week! Thanks so much – I’ll keep you posted!

Tuesday, April 12, 2005

Jenelle's Insurance Case Manager Earns Her Wings!

Our insurance case manager really earned her wings today… as in she is an "Angel with wings" and a true miracle worker! OK, maybe that is a big over the top, but I was amazed today by her quick response… I'll get to the full story in a minute, but first, the latest on Jenelle…

Last Friday, I got home from work and had a message from Dr. Ben-Ezer on our answering machine (grrr - don't you hate messages on Fridays?) Dr. Ben-Ezer consulted with the Rheumatologist at CHOC about Jenelle and decided to run two more blood tests to check for certain metabolic issues. One of which is a test for Lupus. Why we are checking for Lupus, I have no idea - Jenelle certainly does not fit the symptoms I've found on the internet, but hey, why not? I called on Monday to get the details, but Dr. Ben-Ezer is out until Wednesday. I will be taking Jenelle in for this blood work tomorrow (we had to wait a week after starting her bi-carb supplement) and will try to get a hold of Dr. Ben-Ezer to get her thoughts.

Also, I contacted Dr. Menkes today, who is a well known metabolic specialist at Cedars Sinai. He is going to see Jenelle this Thursday at 2:00 p.m. He first suggested an appointment for next week, but upon hearing that Jenelle was to be admitted next week for the Ketogenic Diet at UCLA, he said he could see her this Thursday in case he saw anything that might compromise the diet. Wow - an appointment with 2 days notice? How lucky can you get! Just after making the appointment, I got a call from UCLA's financial person and she was having problems again getting our admission approved for Monday. I told her we needed to give our new "case manager" a try, and gave her the number to Kathy at Health Net, Jenelle's new case manager. In addition, I also decided to contact Kathy to see if we could get approval to see Dr. Menkes. After explaining our reasons for wanting to see Dr, Menkes, Kathy said she would pull Jenelle's file and call me back. Five minutes later, she called and "everything" was approved, including our admission to UCLA for Monday! Like I said, she certainly impressed me and earned her wings - I've now dubbed her our new "Angel"!

I spoke to UCLA this evening to let them know about our appointment with Dr. Menkes on Thursday. They are glad we are going, and want a full report on his opinion! Unfortunately, I was also informed today that we may be in for a problem again with bed availability on Monday. Please start thinking positive thoughts that we'll have a bed available at UCLA next week! I'll keep you posted after our appointment on Thursday. Thanks for the continued prayers and positive thoughts - please keep them coming! I can't help but feel we are finally getting closer to an answer for our Jenelle!

Friday, April 08, 2005

A new date for the diet!

Well, it looks like Dr. Ben-Ezer was true to her word and spoke with Dr. Shields yesterday afternoon. The nurse at UCLA called last night to inform me that Dr. Shields would like us up there on April 18 to admit Jenelle for the Ketogenic Diet! Even though Dr. Shields told me at the conference we needed to "talk", I think he would prefer to have Jenelle admitted so we can start everything right away, including any other tests he may want in light of her new metabolic issues.

UCLA warned me that they expect Jenelle to have a difficult time at first with the diet, but that it was not impossible to get her on it. Jenelle will start the diet a little differently than most patients in that they don't think they can "fast" her to get her into ketosis. What this means is that we may be there longer than usual. UCLA also warned me that she could get "very sick, very fast" and that they wanted to take some extra precautions while she is admitted like daily blood work and keeping an IV open. Remember, Jenelle already has low bi-carbs, and usually when a patient goes on the diet, their bi-carbs get even lower, so we could see some problems. Although I know of kids who had difficulties with the diet and metabolic acidosis, I think it is worth a try, especially since it may bring to light some answers to other questions about Jenelle. Also, it will be easier with insurance to just admit her so we can work with Dr. Shields, rather than wait for an authorization for a consultation, and then admit her! One funny thing - Dr. Shields said, "knowing Jenelle and her usual "opposite" reaction to things, we'll probably have an easier time with this than we think!" - even he knows she is unusual!

Please keep us in your thoughts and prayers next week as we get ready - especially that Jenelle can remain healthy so we are not delayed again! Fortunately, Jenelle has her GI tests scheduled for next Friday, so we won't have to worry about using Keto food instead! As always, I'll keep you posted!

Wednesday, April 06, 2005

Our meeting with the Kidney Doctor

We met with Dr. Ben-Ezer, the Kidney Doctor at CHOC for 3 ½ hours yesterday. Overall, I was very impressed with this doctor. If you recall, Dr. Shields had already faxed a letter to Dr. Ben-Ezer detailing his concerns. Prior to our appointment, Dr. Ben-Ezer pulled all of Jenelle’s labs (dating back to 2003) and reviewed all the numbers. Right from the start she said she did not think Jenelle’s bi-carb issues were related to her Kidneys. She determined this by comparing her average bi-carb level to something else called an “anion gap”. However, there were some weird findings of the bi-carb levels even when she was on a maintained level of Topamax, so she wasn’t sure the Topamax was causing the problem either. She asked if we had ever had a “blood gas” test done and we said no, so she said she could run it right there in the room.

First the doctor did “a blood gas” test on blood taken from Jenelle’s finger (just a prick.) The readings (the specific numbers of which I can’t recall, but it included things like CO2 levels and PH levels) indicate that Jenelle has “Metabolic Acidosis”, but that this Metabolic Acidosis is not caused by her Kidneys. The blood gas test further showed that Jenelle’s kidneys and liver functions are normal. Jenelle has always had very blue feet, and upon seeing them, the doctor ordered a second “blood gas” test taken from her toe to “prove a point.” Obviously, the levels from this test were even worse confirming her Metabolic Acidosis. Just to give you an idea… the oxygen level in the sample taken from her hand was 63% (which isn’t great), and the oxygen level in the sample from her foot was 36%. Dr. Ben-Ezer prescribed a bi-carb supplement for Jenelle and wants to see her in a month, but after that, she thinks we need a Rheumatologist. I have no idea why we need a Rheumatologist, other than Dr. Ben-Ezer works with kidney problems, and this isn’t one!

So, what is causing this Metabolic Acidosis? Unfortunately, we don’t know. Dr. Ben-Ezer said, “its like what came first, the chicken or the egg? Here we’ve found the chicken, we just need to find the egg. Will Jenelle be able to go onto the Ketogenic Diet? We don’t know, however I personally know of two children who tried the diet but were taken off because later they were diagnosed with Metabolic Acidosis. Dr. Ben-Ezer plans to call Dr. Shields today to discuss her findings. She did however tell us we could proceed with the diet without waiting for the findings from the Rheumatologist – so that is hopeful.

As a follow up, I wanted to point out a couple of things from my last update about Dr. Dravet. As I’ve been mulling over all the information from this past weekend, I’ve noticed two things: First, I personally think there were some “language barrier” issues. When Dr. Dravet said Jenelle did not have Epilepsy, it is my feeling that in Europe, Neurologists only think that Epilepsy is when seizures only come from a problem with the brain. In the United States, seizures and Epilepsy are usually synonymous – if anything for the sole purpose of taking the stigma away from the word Epilepsy. So, according to US Neurologists, Jenelle has uncontrolled seizures of an unknown cause that is also known as Epilepsy. The second thing I noticed is that the Health Insurance Industry really dictates how U.S. doctors can practice medicine, and in reality, how doctors diagnose problems. Dr. Dravet said that in France when a child is referred to a Neurologist, they immediately run all tests including MRI, EEG, metabolic panels and chromosome panels. In the U.S., you have to have a reason to “suspect something” before you can “order” the test. Because their hands are so tied, US Doctors literally take a shot in the dark hoping they will find the answer by chance. We definitely need a call for better health reform.

One last thing –I wanted to give an update on Jenelle’s friend Lily. Unfortunately, even after brain surgery, Lily continued to have grand mal seizures, almost as bad as before her surgery. It was so heartbreaking to hear. As a last resort, her doctor felt they needed to try Vigabatrin – a drug Jenelle had some success with that we had to purchase from Canada. Lily’s Mom is concerned with the risk of vision loss as a side effect, but was willing to give it a try!. We had a lot of Vigabatrin “left over” from when Jenelle was on it, so I sent what we had to Lily’s Mom last week. Lily started it last Thursday, and they haven’t seen a grand mal since! (Knock on wood – us seizure Moms are superstitious!) Lily's website has moved, so here is the new link in case you’d like to check on Lily (and her cute little sister Andi) from time to time. We are definitely saying prayers that the Vigabatrin is the answer for Lily!

Lily's New Website!

Thank you all for your thoughts and prayers for Jenelle. At this point, we need to meet with Dr. Shields again and discuss where to go from here! I’ll keep you posted!

Sunday, April 03, 2005

"Paging Dr. House!"

WOW, there is so much to report, I'm warning you now, this is going to get long. The Pediatric Epilepsy Conference given by the Epilepsy Foundation was this weekend in Lakewood, California. This is the one I've been telling you about where I got to present Jenelle's case to about 150 parents and doctors. We met with Dr. Charlotte Dravet, who was the keynote speaker for this conference, on Friday and she was able to examine Jenelle. Dr. Dravet is famous for not only her own Epilepsy Syndrome (Dravet Syndrome, or Severe Myoclonic Epilepsy of Infancy) but she worked with Dr. Gastaut, and wrote the thesis on Lennox Gastaut Syndrome.

We saw Dr. Dravet for over an hour and she examined Jenelle and viewed her first video EEG from September 2003 as well as her PET scan from UCLA. After her examination, she informed us that "Jenelle does not have Epilepsy".... "WHAT?" It is her opinion that Jenelle had Infantile Spasms, but not "true" Infantile Spasms (on the EEG she saw, she did not see Hypsarythmia - the "tell tell" sign), and that Jenelle's seizures are not coming from her brain, but are most likely caused by an unknown "disease" and/or metabolic disorder! I nearly cried when she said this, and Brett said he felt like he wanted to hit her! ;) We left UCLA on Friday in utter shock and disbelief, but we felt some relief in knowing Jenelle did not have "true" Lennox Gastaut. The faculty doctors aparently spoke about Jenelle that evening and still wanted me to present her case because it was so "unusual!"

When we arrived at the conference, it seemed as if we were the talk of the town amongst the faculty and staff. Everyone had already heard the shocking news that Jenelle had seizures, but that it was not Epilepsy. Jenelle's Neurologist, Dr. Shields, was apart of the conference as well, but and he was not scheduled to be there on Saturday, so we had to wait a day to break the news to him! The conference was amazing. Not only did we get to present Jenelle and get invaluable feedback on where to go next, I was able to meet many parents I've made contact with over the internet from various support groups. Some parents traveled as far as Vancouver, Maryland and Atlanta. We brought Jenelle with us and many recognized her immediately from her photos and our website. It was truly like meeting old friends, and friends that knew and truly understood the kind of confusion and frustration we were experiencing. We are so thankful for the opportunity to meet with Dr. Dravet - where we go from here is yet to be decided when we meet with Dr. Shields soon.

Today, I went to the conference with Jenelle for the sole purpose of seeing Dr. Shields. When I told him about Dr. Dravet's opinion, he was surprised, but he also said he didn't agree. He definitely wanted us to get back into to see him so we could discuss everything in detail. I told him I still had doubts because Dr. Dravet only saw one EEG, and did not have the opportunity to see Jenelle's last EEG from April 2004, where we caught a grand mal. The only reason she was unable to see it on Friday is because we did not have a VHS Machine available. Dr. Shields agreed that he would have been interested in her opinion after viewing that EEG and said we needed to meet soon. As I walked out of that conference room from talking with Dr. Shields, I noticed a "vendor" table that was playing a video tape. I quickly ran to find Dr. Dravet and she followed me to the table so she could view Jenelle's video tape. After watching the tape, she said, "You daughter is very strange, and yet very interesting!" (Just the thing you want to hear from one of the world's top neurologists!) Jenelle's brain waves do not match what she is doing on video. She changed her opinion slightly, and said she feels Jenelle does have LGS seizures, but maintained that they were not neurological in nature, but rather caused by something metabolic.

So... What does this mean? Well, it does not change the treatment. We continue with our main goal of stopping her seizures. It does not necessarily mean we cannot try the diet - I asked Dr. Shields about this and he specifically said he still wanted to try her on it, but would be quick to stop if things didn't work out. We were given the name of a metabolic specialist from Cedars Sinai that we may look into seeing. We also have our upcoming appointment with the Kidney Doctor from CHOC on Tuesday, so that may shed some light as well. The big problem with the metabolic issue is that most of the doctors agree that Jenelle has already been tested for the metabolic conditions that are "treatable", which indicates that whatever metabolic disease she may have may not be known or is yet to be discovered. The problem with testing for something that is unknown is that there is no cure, so you won't find many doctors willing to continue testing.

So, we will continue with our upcoming appointments, and the path we were on. In case you are wondering what the title of this update means... You may not be familiar with the new show on FOX called "House"... It is about a doctor who specializes in "differential diagnosis" and/or "thinking out of the box". While driving home from UCLA on Friday evening, we laughed and said, "We need to find a Dr. HOUSE!"

We see the Kidney doctor on Tuesday - I'll keep you posted! Thank you for the continued prayers.