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!
Wednesday, April 06, 2005
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.
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.
Friday, March 25, 2005
Good Friday update
I'm not sure if it is a jinx, or just Murphy's Law, but usually after sending a positive update about Jenelle things change. I guess that is the way this roller coaster goes - ups and downs.
Jenelle had a seizure lasting 10 minutes yesterday morning, was given Diastat (her emergency medicine) and was fine for the rest of the day. Prior to the 10 minute seizure and within that same hour, Jenelle had many other lengthy seizures all around 4 minutes in length. I called UCLA and left a message telling the nurse that I didn’t think we could take this for another three weeks or more (assuming it takes that long to get onto the Diet.) It seems her seizures are getting longer, and I was afraid for the days ahead. I also called the Kidney Doctor from CHOC and asked to be placed on their cancellation list, explaining that Jenelle's seizures were out of control and I wasn't sure that things wouldn't get worse before our April 5 appointment.
The nurse from UCLA returned my call, and said Dr. Shields was concerned with the new seizures and wanted to increase her Topamax again to the last dose we were at to see if that stabilizes her. We both agree this sudden onset of seizures is most likely from her reduced dose of Topamax (she was literally on half the dose she was previously taking.) It is tricky because we do not want to lower her bi-carbs again, but we also do not want her going into status because her seizures are uncontrolled. After 3 days of this increase, I am to update Dr. Shields on Monday, and we'll go from there. The nurse said that there was a small possibility that if Jenelle's seizures do not improve over the weekend and continue to be like they have been this past week, Dr. Shields may want to admit her to the hospital at UCLA for some tests and observation. We are pretty sure all of this is being caused by the medication changes, but there is a small chance that "something new" could be happening. Fortunately, Dr. Shields will be around through the weekend and all next week. Usually after Jenelle is given Diastat the frequency of her seizures decrease… hopefully this last dose will work throughout the weekend while we increase her Topamax.
On a side note, we are scheduled to meet with Dr. Charlotte Dravet from France in the afternoon on Friday, April 1st (no fooling!) I have also been working with the Epilepsy Foundation to help them prepare Jenelle's "PowerPoint" presentation for the Pediatric Epilepsy Conference next weekend. Would you believe that Jenelle's medical records take up almost 3 full binders already?
And some good news. I finally got our HMO to assign a "case manager" to Jenelle. You would not believe all it took to get that. I had one customer service person take down my request for a case manager (including details on Jenelle's history), and then another rep told me the company did not have any positions like that, nor could he find my previous request! The day after I was told they didn't have "case managers", I got a call from Jenelle's "new" case manager who works for our HMO. She took down her history, and told me she would now be handling all of Jenelle's authorization requests, as well as communications between her medical group and the insurance. She explained that the purpose for having a "case manager" is so that one person is assigned to Jenelle, and that one person will know her history and thus we won't have to explain things like why we go to UCLA instead of CHOC. In theory, it sounds perfect - haven't used her yet, so the jury is still out on that one! ;)
It goes without saying - thank you for the continued prayers and positive thoughts for Jenelle. To those of you who celebrate, Happy Easter! I'll keep you posted!
Jenelle had a seizure lasting 10 minutes yesterday morning, was given Diastat (her emergency medicine) and was fine for the rest of the day. Prior to the 10 minute seizure and within that same hour, Jenelle had many other lengthy seizures all around 4 minutes in length. I called UCLA and left a message telling the nurse that I didn’t think we could take this for another three weeks or more (assuming it takes that long to get onto the Diet.) It seems her seizures are getting longer, and I was afraid for the days ahead. I also called the Kidney Doctor from CHOC and asked to be placed on their cancellation list, explaining that Jenelle's seizures were out of control and I wasn't sure that things wouldn't get worse before our April 5 appointment.
The nurse from UCLA returned my call, and said Dr. Shields was concerned with the new seizures and wanted to increase her Topamax again to the last dose we were at to see if that stabilizes her. We both agree this sudden onset of seizures is most likely from her reduced dose of Topamax (she was literally on half the dose she was previously taking.) It is tricky because we do not want to lower her bi-carbs again, but we also do not want her going into status because her seizures are uncontrolled. After 3 days of this increase, I am to update Dr. Shields on Monday, and we'll go from there. The nurse said that there was a small possibility that if Jenelle's seizures do not improve over the weekend and continue to be like they have been this past week, Dr. Shields may want to admit her to the hospital at UCLA for some tests and observation. We are pretty sure all of this is being caused by the medication changes, but there is a small chance that "something new" could be happening. Fortunately, Dr. Shields will be around through the weekend and all next week. Usually after Jenelle is given Diastat the frequency of her seizures decrease… hopefully this last dose will work throughout the weekend while we increase her Topamax.
On a side note, we are scheduled to meet with Dr. Charlotte Dravet from France in the afternoon on Friday, April 1st (no fooling!) I have also been working with the Epilepsy Foundation to help them prepare Jenelle's "PowerPoint" presentation for the Pediatric Epilepsy Conference next weekend. Would you believe that Jenelle's medical records take up almost 3 full binders already?
And some good news. I finally got our HMO to assign a "case manager" to Jenelle. You would not believe all it took to get that. I had one customer service person take down my request for a case manager (including details on Jenelle's history), and then another rep told me the company did not have any positions like that, nor could he find my previous request! The day after I was told they didn't have "case managers", I got a call from Jenelle's "new" case manager who works for our HMO. She took down her history, and told me she would now be handling all of Jenelle's authorization requests, as well as communications between her medical group and the insurance. She explained that the purpose for having a "case manager" is so that one person is assigned to Jenelle, and that one person will know her history and thus we won't have to explain things like why we go to UCLA instead of CHOC. In theory, it sounds perfect - haven't used her yet, so the jury is still out on that one! ;)
It goes without saying - thank you for the continued prayers and positive thoughts for Jenelle. To those of you who celebrate, Happy Easter! I'll keep you posted!
Tuesday, March 22, 2005
More doctor's appointments...
We finally have some appointments lined up for Miss Jenelle with the CHOC Kidney doctor being the first set for April 5. After reviewing the documents from UCLA, the CHOC Kidney doctor felt it was OK to see Jenelle at the first available appointment rather than on an urgent basis. Luckily, we are only waiting a couple of weeks. Jenelle's GI tests are scheduled for April 15, so we had to postpone her follow up with the GI doctor to April 21. The month is already looking busy - and we haven't even factored in a date for the diet at UCLA (hopefully!) I spoke to Dr. Shields' nurse and he is pleased that Jenelle's bi-carb levels have increased, but really would feel better waiting for the approval from the Kidney doctor before we start the diet. Let's hope if the Kidney doctor orders tests, that they can be done quickly.
Since lowering her Topamax, Jenelle has started to bring back some of her old seizures we haven't seen for a while, specifically her myoclonic jerks. Unfortunately, our girl has decided to make some changes to these "old" seizure types and will now cry after a myoclonic jerk - something she has never done before. I think it is just that she is more aware of her seizures now, and how they interrupt her day, and not because of pain. Seizures may wear out a patient but are usually never painful - so we are told. Also this morning, Jenelle had a 3 minute seizure that I had never seen before and didn't quite know how to describe. It started as if it were going to be a grand mal, but then she started doing things she has never done before like lip smacking and grinding her teeth. I called UCLA to report this new stuff, and told the nurse I didn't know how to describe it - but she told me to just tell her what I saw, which is their preferred way of describing a seizure rather than me trying to naming it (grand mal, petite mal, etc.) Dr. Shields feels these new seizures are from the lower dose of Topamax, but does not want to increase it and would prefer we get her onto the diet as soon as possible! Sounds good to me!
And now for some good news. Jenelle is really recognizing people lately. I've been playing a game with her where I sit her up in my lap, and ask her to look for someone in the room (i.e.: Where is Daddy?, Where is Jack?) Would you believe that Jenelle will actually move her head and/or her eyes in the direction of each different person? What a wonderful improvement! Sometimes when I'm holding her, I ask "where is Mommy?" and she bends her head back to look up at me! We were showing this off today for her OT this morning, and Jack was on the other side of the room. When I asked Jenelle to look for Jack, she turned her head in his direction and looked directly at him. She may not be able to say our names, but she definitely knows who we are!
That is all for now. We are definitely on hold for the diet until after we see the Kidney doctor. Please say some prayers that we can get that done quickly, especially if the Kidney doctor wants to run special tests (that may require additional authorization - ugh!)
I'll keep you posted!
Since lowering her Topamax, Jenelle has started to bring back some of her old seizures we haven't seen for a while, specifically her myoclonic jerks. Unfortunately, our girl has decided to make some changes to these "old" seizure types and will now cry after a myoclonic jerk - something she has never done before. I think it is just that she is more aware of her seizures now, and how they interrupt her day, and not because of pain. Seizures may wear out a patient but are usually never painful - so we are told. Also this morning, Jenelle had a 3 minute seizure that I had never seen before and didn't quite know how to describe. It started as if it were going to be a grand mal, but then she started doing things she has never done before like lip smacking and grinding her teeth. I called UCLA to report this new stuff, and told the nurse I didn't know how to describe it - but she told me to just tell her what I saw, which is their preferred way of describing a seizure rather than me trying to naming it (grand mal, petite mal, etc.) Dr. Shields feels these new seizures are from the lower dose of Topamax, but does not want to increase it and would prefer we get her onto the diet as soon as possible! Sounds good to me!
And now for some good news. Jenelle is really recognizing people lately. I've been playing a game with her where I sit her up in my lap, and ask her to look for someone in the room (i.e.: Where is Daddy?, Where is Jack?) Would you believe that Jenelle will actually move her head and/or her eyes in the direction of each different person? What a wonderful improvement! Sometimes when I'm holding her, I ask "where is Mommy?" and she bends her head back to look up at me! We were showing this off today for her OT this morning, and Jack was on the other side of the room. When I asked Jenelle to look for Jack, she turned her head in his direction and looked directly at him. She may not be able to say our names, but she definitely knows who we are!
That is all for now. We are definitely on hold for the diet until after we see the Kidney doctor. Please say some prayers that we can get that done quickly, especially if the Kidney doctor wants to run special tests (that may require additional authorization - ugh!)
I'll keep you posted!
Friday, March 18, 2005
Our "Typical" 2 Year Old!
Well, we went to the ER last night even though I really did not want to spend St. Patrick's Day in the ER - it was packed! When Jenelle woke from her afternoon nap, she again refused her bottle only taking an ounce of fluid, and did not have a wet diaper. We arrived in the ER at 4pm, and got to leave around 9:30 - not too bad. Believe it or not... she is fine. She is NOT dehydrated, her liver function was normal and her bi-carb level is 20- almost normal and definitely within UCLA's limits for the diet! Basically, the "worst case scenario" is that we have a typical 2 year old who is being picky about wanting to drink her bottle! WOW - who would have ever thought Jenelle was just being normal!
I was in touch with UCLA while we were at the ER, and they faxed a letter and the labs to the ER to help us out. When I spoke to the nurse at UCLA just after we were discharged, she was just as shocked as we were! While at the ER, I was convinced she was dehydrated because they were unable to get a vein for an IV and she did not have tears when she cried. Apparently her labs said otherwise!
UCLA still wants her to see a kidney doctor before rescheduling the diet. We are now waiting to get an appointment with the doctor we were referred to at CHOC. Dr. Shields drafted a letter to this doctor explaining his concerns and why it was an urgent need to get her in. We should hear something soon - please pray that she gets in quickly!
We appreciate the support - I'll keep you updated!
I was in touch with UCLA while we were at the ER, and they faxed a letter and the labs to the ER to help us out. When I spoke to the nurse at UCLA just after we were discharged, she was just as shocked as we were! While at the ER, I was convinced she was dehydrated because they were unable to get a vein for an IV and she did not have tears when she cried. Apparently her labs said otherwise!
UCLA still wants her to see a kidney doctor before rescheduling the diet. We are now waiting to get an appointment with the doctor we were referred to at CHOC. Dr. Shields drafted a letter to this doctor explaining his concerns and why it was an urgent need to get her in. We should hear something soon - please pray that she gets in quickly!
We appreciate the support - I'll keep you updated!
Thursday, March 17, 2005
St. Patrick's Day Update
It has been an emotionally draining and challenging week in regards to Jenelle. It has also been a week where so much has happened, its difficult to know where to begin to update. However, if I postpone this update any longer - who knows what I will miss!
First of all and most importantly - Jenelle is fine. In the past two weeks we've seen fewer seizures than ever. She seems to be in less pain from her UTI, and we are half-way through the course of medication. Yesterday was a long, difficult day in dealing with our insurance. As I was putting her to bed last night, I leaned over the crib and put my hand to her cheek and got the biggest smile in return (smiles are as rare as laughs these days) Then after she smiled, she gave me some giggles. It was as if she knew her poor old Mom was emotionally spent, and she was trying to give me a little ray of hope to help me fight on. She is amazing.
On Monday, Dr. Shields presented Jenelle's case (including the new issue with her UTI) to the team at UCLA. It appears that the blood work Jenelle had done on March 7 indicated that her bi-carb level was still too low, even though we have reduced the drug (Topamax) that UCLA believes is causing this problem. I found out the next day that her bi-carb level was a 14, even lower than the previous level. Before re-scheduling our date to start the diet, UCLA wants Jenelle seen by a Nepherologist (Kidney Doctor). They are very concerned that Jenelle has something called Renal Tubular Acidosis which could eventually lead to kidney stones and/or kidney failure. If Jenelle's acidosis is caused by her drugs, then she will be OK to do the diet. If it is "metabolic" in nature (and thus pre-existing) she will not be able to go onto the diet.
Part of the agony of this week has been dealing with insurance and Jenelle's medical group. UCLA wants Jenelle to urgently see a kidney doctor at UCLA (they are holding an appointment for next Thursday if we can get authorization - maybe sooner.) The problem is that HMOs do not want to authorize an urgent request for a doctor outside their contracting medical group. After a couple of days figuring out who and how to request the authorization (apparently Jenelle's medical group only considers phoned in requests as urgent, not faxed ones - who knew!) we got word last night that we she is approved to see a kidney doctor at CHOC. I called last night for an urgent appointment, but apparently "the doctor" wants to review her medical records first so he can determine for himself whether or not her situation is urgent. UCLA is upset because they know their kidney doctor has experience working with kids that are on the Ketogenic Diet, and feel they may not be able to communicate easily with a doctor at CHOC than they have with their own kidney doctor. That is understandable, but unfortunately with our HMO I don't think it can be done. I'd pay out of pocket, but they are talking ultra sounds and other tests - we just can't afford it. All that said, I don't believe we'll be getting a new date for the diet anytime soon. UCLA would like us to start as soon as possible after we get these kidney questions answered. I appreciate them being so through - I feel we are in the right place.
Brett's favorite saying is "surrounded by morons, we press onward!" This couldn't be a more accurate desription about dealing with our insurance. Jenelle's doctors have been wonderful in doing all that they can to help the process. I wish the insurance process could be so much easier.
During the time it took to type this, another issue has come up. Jenelle is refusing her bottles and has not had a "wet" diaper since yesterday morning. Refusing her bottle is most likely the acidosis as it will cause you to lose your appetite. The lack of "wet" diapers could indicate dehydration. If after her afternoon nap she is still dry, our Peditrician's office has instructed us to take her to emergency (they are closed on Thursday afternoons.)
I will keep you all posted. Thank you for your continued prayers.
Oh yes, and Happy St. Patrick's Day from the Curran Family. Lets hope the luck of the Irish can help us pull through some miracles!
First of all and most importantly - Jenelle is fine. In the past two weeks we've seen fewer seizures than ever. She seems to be in less pain from her UTI, and we are half-way through the course of medication. Yesterday was a long, difficult day in dealing with our insurance. As I was putting her to bed last night, I leaned over the crib and put my hand to her cheek and got the biggest smile in return (smiles are as rare as laughs these days) Then after she smiled, she gave me some giggles. It was as if she knew her poor old Mom was emotionally spent, and she was trying to give me a little ray of hope to help me fight on. She is amazing.
On Monday, Dr. Shields presented Jenelle's case (including the new issue with her UTI) to the team at UCLA. It appears that the blood work Jenelle had done on March 7 indicated that her bi-carb level was still too low, even though we have reduced the drug (Topamax) that UCLA believes is causing this problem. I found out the next day that her bi-carb level was a 14, even lower than the previous level. Before re-scheduling our date to start the diet, UCLA wants Jenelle seen by a Nepherologist (Kidney Doctor). They are very concerned that Jenelle has something called Renal Tubular Acidosis which could eventually lead to kidney stones and/or kidney failure. If Jenelle's acidosis is caused by her drugs, then she will be OK to do the diet. If it is "metabolic" in nature (and thus pre-existing) she will not be able to go onto the diet.
Part of the agony of this week has been dealing with insurance and Jenelle's medical group. UCLA wants Jenelle to urgently see a kidney doctor at UCLA (they are holding an appointment for next Thursday if we can get authorization - maybe sooner.) The problem is that HMOs do not want to authorize an urgent request for a doctor outside their contracting medical group. After a couple of days figuring out who and how to request the authorization (apparently Jenelle's medical group only considers phoned in requests as urgent, not faxed ones - who knew!) we got word last night that we she is approved to see a kidney doctor at CHOC. I called last night for an urgent appointment, but apparently "the doctor" wants to review her medical records first so he can determine for himself whether or not her situation is urgent. UCLA is upset because they know their kidney doctor has experience working with kids that are on the Ketogenic Diet, and feel they may not be able to communicate easily with a doctor at CHOC than they have with their own kidney doctor. That is understandable, but unfortunately with our HMO I don't think it can be done. I'd pay out of pocket, but they are talking ultra sounds and other tests - we just can't afford it. All that said, I don't believe we'll be getting a new date for the diet anytime soon. UCLA would like us to start as soon as possible after we get these kidney questions answered. I appreciate them being so through - I feel we are in the right place.
Brett's favorite saying is "surrounded by morons, we press onward!" This couldn't be a more accurate desription about dealing with our insurance. Jenelle's doctors have been wonderful in doing all that they can to help the process. I wish the insurance process could be so much easier.
During the time it took to type this, another issue has come up. Jenelle is refusing her bottles and has not had a "wet" diaper since yesterday morning. Refusing her bottle is most likely the acidosis as it will cause you to lose your appetite. The lack of "wet" diapers could indicate dehydration. If after her afternoon nap she is still dry, our Peditrician's office has instructed us to take her to emergency (they are closed on Thursday afternoons.)
I will keep you all posted. Thank you for your continued prayers.
Oh yes, and Happy St. Patrick's Day from the Curran Family. Lets hope the luck of the Irish can help us pull through some miracles!
Monday, March 14, 2005
Change in Plans!
Yesterday morning, Jenelle started screaming and crying unconsolably. Knowing she wasn't constipated, we had no idea what was wrong. She screamed in pain when I felt around her tummy, so I took her to the ER thinking it may have been a kidney stone or worse. Turns out, Jenelle has a pretty bad urinary tract infection (UTI), most likely caused by her "clean out!" (oh joy!) They placed her on a 10 day course anti-biotic. Once we got home I called UCLA to see if this would hold up our admission.
Because of the infection, UCLA told us not to come. It is their experience that it is difficult if not impossible to get a child into Ketosis while the child is fighting off infection. We are disappointed, but a little relieved not to be wasting time driving to LA or in the hospital (trying to look at the "bright" side!) Had we not diagnosed the UTI last night, we'd have probably found it today or tomorrow anyway
The team at UCLA will discuss Jenelle today and make a decision as to when we should plan to come back. The nurse who runs the diet is hoping for this coming Monday, but is not sure what the doctors will want. Worst case scenario is we'll have to wait until she finishes the course of antibiotics (so another 9 days!)
Additionally, the nurse informed me last night that Jenelle's bloodwork from last Monday indicated that her bi-carb level is still too low. This may give us time to lower her Topamax even more, and maybe start a bi-carb supplement (which may also help the infection!) I am at home today with Jenelle. At times she seems uncomfortable, but otherwise is doing great!
I'll keep you all posted as to our new start date! Thank you for the continued thoughts and prayers!
Kelly
Because of the infection, UCLA told us not to come. It is their experience that it is difficult if not impossible to get a child into Ketosis while the child is fighting off infection. We are disappointed, but a little relieved not to be wasting time driving to LA or in the hospital (trying to look at the "bright" side!) Had we not diagnosed the UTI last night, we'd have probably found it today or tomorrow anyway
The team at UCLA will discuss Jenelle today and make a decision as to when we should plan to come back. The nurse who runs the diet is hoping for this coming Monday, but is not sure what the doctors will want. Worst case scenario is we'll have to wait until she finishes the course of antibiotics (so another 9 days!)
Additionally, the nurse informed me last night that Jenelle's bloodwork from last Monday indicated that her bi-carb level is still too low. This may give us time to lower her Topamax even more, and maybe start a bi-carb supplement (which may also help the infection!) I am at home today with Jenelle. At times she seems uncomfortable, but otherwise is doing great!
I'll keep you all posted as to our new start date! Thank you for the continued thoughts and prayers!
Kelly
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