Last week was so crazy, I'm not exactly sure where to begin...
Tuesday, the day after Valentines Day, Jenelle's teacher at Blind Children's' told me she was concerned about Jenelle because all of a sudden, it was as if she has forgotten how to suck a bottle. It took Jenelle an hour to finish a bottle, and she was practically choking herself while taking it. Grandma noticed the same thing last weekend, as have I. Of course, the biggest scare in all this is that she is regressing and losing skills - always a scare when there is no diagnosis. Her teacher thought it might be a side effect from our recent increase in Felbatol, so I told her I'd call her Neuro at UCLA.
The next day, UCLA called back to inform me Dr. Shields was out of town. The nurse who called is also in charge of the Ketogenic Diet Program, and told me they had most of Jenelle's lab work back! They had a concern in that Jenelle's "bi-carb" levels were too low indicating that she is acidotic. This can happen when a child is on the Ketogenic Diet and it is something they watch carefully. Apparently the bi-carb level (which is the level of CO2 in the blood) should be between 21 - 34, and Jenelle's was 15 - much too low for a child not on Keto already. There are two other little girls that are similar to Jenelle (Lily in Arizona being one) that were recently diagnosed with metabolic acidosis. Apparently, acidosis can causes "loss of appetite", and "loss of gross motor skills" (so this may explain the recent problem with the bottle!) When these two other girls started taking bi-carb supplements, their development really began to improve. UCLA does not want to start Jenelle on a supplement until she starts the diet, but does want her bi-carb level to increase before they will let her start. UCLA is convinced this issue is due to Jenelle taking Topamax and not the Felbatol. Ironically, we recently increased Topamax last month (remember our ER fiasco?) so now, we have been instructed to wean her back down to the previous level to see if it helps. We are still on track to start the diet March 14, assuming we don't get bumped by someone needing the bed.
As I was on the phone with UCLA, our daycare provider was trying to reach me because Jenelle was having too many long seizures again. She eventually got a hold of Brett and asked if she should use Diastat (our emergency medication to stop her seizures) - at that point, Jenelle had been seizing for 6 minutes. He told her yes, and that he was on the way. Once I was off the phone, I got Brett's voicemail about Jenelle and called him to get more details. After talking to him, I called our daycare to find out what type of seizure Jenelle was having and was told it was her usual atonic seizure type. As I was on the phone with daycare, Jenelle went into a grand mal. Our daycare provider hadn't given Jenelle her Diastat yet as she had stopped seizing after her previous 6 minute seizure. The daycare provider told me that Jenelle was seizing like she had never seen before (literally convulsing) so I told her it was a grand mal, and to give her the Diastat immediately without waiting for the seizure to last over 5 minutes. At this point, Jenelle seizures added up to almost 30 minutes of the last hour. The Diastat did its job, and Jenelle was OK the rest of the evening.
After getting off the phone with daycare, I called UCLA again to let the nurse know about the increase in seizures - she was concerned and told me to hold off on lowering the dose of Topamax until we figured out why she was so unstable. So... once I finally got home to Jenelle, I decided to take her temperature - Jenelle was running a low grade fever of 100.8, which ironically is the same it was with her last grand mal in January! Anyway - we decided she was most likely fighting off some kind of bug and decided to wait a couple of days to see if she was going to get sicker. She was fine all weekend, so I decided to lower her Topamax on Sunday- whew, back on the road to the Diet!
Oh yes, it doesn't end there. On Thursday, UCLA called to inform me that the lab neglected to run a test Dr. Shields had ordered, and they needed me to take Jenelle to draw more blood. I took her in on Friday afternoon, and she a great job, even with out our favorite Phlebotomist as she was gone on vacation (lucky her!) What an oxymoron - the use of "favorite" and "phlebotomist" in the same sentence!
Also last week, Jenelle's Pediatrician called to inform me that our referral to a GI Doctor had been approved. Poor Jenelle is very constipated from her meds, and even with daily fiber, increased fluids and the like, she will only have a BM every 3 to 5 days. Dr. Shields said this is common in children like Jenelle who have little mobility. During a conversation with our Pediatrician about the bi-carb levels, I mentioned that I had noticed that Jenelle was not urinating frequently. Remember it took 3 days just to get a sample two weeks ago? They are concerned and think we may also need a referral to a Kidney Doctor as well. This weekend we increased Jenelle's fluids, and did see a difference, so hopefully we can avoid that route. Dr. Patel mentioned that we may want the GI Doctor to run a "swallow study" to make sure Jenelle is not aspirating while taking her bottle (given her recent problems.) If she is aspirating, we may be headed towards her getting a G-Tube for feeding. All of this is just looking ahead, and hopefully we can get an appointment soon to the GI Doctor - I'm still waiting for a call back with our appointment, and would like to get this resolved before we start the diet since the diet also increases constipation - OH JOY!
And finally, this is now Tuesday. I've been drafting this update over the long weekend and spoke to UCLA again today. We could use some quick prayers as I learned today that the child who was supposed to start the Ketogenic Diet today was bumped because they did not have a hospital bed. This of course means that if they cannot get the child in tomorrow, our start date for the diet may be bumped as well. Everything for us works so well for the week of March 14 and we'd really like to start that week. Please say some prayers and send some positive thoughts that this child can start tomorrow so we will not be delayed. Jenelle is doing better this week, but we realize from our experience last week - things can change daily!
Sorry this was so long - Thanks again for your thoughts and prayers - I'll keep you posted!
Tuesday, February 22, 2005
Monday, February 14, 2005
The Valentine Update on Jenelle
Just wanted to send a quick update since my really exciting update from last week. The very next day, UCLA called and they want to schedule Jenelle for the week of March 14 or March 21 - all this depending on test results and of course bed availability! I'm hoping for the 14th as my Mother will be here the weekend before, and she will be able to just stay the following week with Jack while we are staying at UCLA.
Speaking of Jack... he is such an amazing big brother. I didn't mention this because my update was long enough already, but when we picked him up after our trip to UCLA last week, he of course asked how Jenelle's doctor's appointment went. He understands now that Jenelle is "different" and that she has a "broken brain." We don't get the tantrums anymore when we tell him we have to see her doctor, and he is usually very genuinely concerned about each visit to the doctor. So, I told Jack that Jenelle was going to get to start a "magic diet" that may help stop her seizures and help "fix" her "broken brain." Jack then said, "Maybe then she'll start talking and then she can play with me!" We can only hope.
I spoke to the nurse for Dr. Haas last week and he has finished reviewing Jenelle's medical records. He said he did not think Jenelle had any mitochondrial disease and that if we really wanted to ease our minds, we could do a muscle biopsy, but in his opinion, it wasn't necessary. That is a relief in a way, and I feel comfortable that we will only need to run the blood test that Dr. Shields is planning. He said nothing about metabolic issues (which is the main reason I sent the records) but I think I'll wait until we get her recent test results back since UCLA is already running these tests for the diet. If anything comes of the recent tests, it may be worth a call back to clarify things. Speaking of which, getting Jenelle's tests done was not easy. This time however they were able to get all the blood they needed in one poke, however collecting urine was another chore. With Jenelle always in a "lying down" position, and with constant wiggling, it is difficult to get anything in the bag we are supposed to use. Finally after three days, I was able to get a "small" sample and I'm hoping that is enough for the tests that need to be run.
Thanks again for continued prayers for Jenelle. Thank you also for the prayers for Jenelle's friend Lily. Lily is now home and is recovering well, but is still having some generalized seizures, which the surgery was supposed to stop. We are praying this is just a part of the recovery process and that after a while, they disappear again.
I'll keep you posted!
Speaking of Jack... he is such an amazing big brother. I didn't mention this because my update was long enough already, but when we picked him up after our trip to UCLA last week, he of course asked how Jenelle's doctor's appointment went. He understands now that Jenelle is "different" and that she has a "broken brain." We don't get the tantrums anymore when we tell him we have to see her doctor, and he is usually very genuinely concerned about each visit to the doctor. So, I told Jack that Jenelle was going to get to start a "magic diet" that may help stop her seizures and help "fix" her "broken brain." Jack then said, "Maybe then she'll start talking and then she can play with me!" We can only hope.
I spoke to the nurse for Dr. Haas last week and he has finished reviewing Jenelle's medical records. He said he did not think Jenelle had any mitochondrial disease and that if we really wanted to ease our minds, we could do a muscle biopsy, but in his opinion, it wasn't necessary. That is a relief in a way, and I feel comfortable that we will only need to run the blood test that Dr. Shields is planning. He said nothing about metabolic issues (which is the main reason I sent the records) but I think I'll wait until we get her recent test results back since UCLA is already running these tests for the diet. If anything comes of the recent tests, it may be worth a call back to clarify things. Speaking of which, getting Jenelle's tests done was not easy. This time however they were able to get all the blood they needed in one poke, however collecting urine was another chore. With Jenelle always in a "lying down" position, and with constant wiggling, it is difficult to get anything in the bag we are supposed to use. Finally after three days, I was able to get a "small" sample and I'm hoping that is enough for the tests that need to be run.
Thanks again for continued prayers for Jenelle. Thank you also for the prayers for Jenelle's friend Lily. Lily is now home and is recovering well, but is still having some generalized seizures, which the surgery was supposed to stop. We are praying this is just a part of the recovery process and that after a while, they disappear again.
I'll keep you posted!
Tuesday, February 08, 2005
Our trip to UCLA
The past few days have been quite eventful. First, I had not mentioned this yet in any of my recent updates, but the Southern California Epilepsy Foundation is having a seminar in early April geared towards parents of children with rare Infant Epilepsy Syndromes. Dr. Charlotte Dravet from France is one of the many doctors coming from all over the world to speak at this seminar about rare forms of Infant Epilepsy. Dr. Dravet not only discovered Severe Myoclonic Epilepsy (Dravet Syndrome, which Jenelle does not have) but she worked closely with Dr. Lennox, the doctor who discovered Lennox Gastaut Syndrome. The last time Dr. Dravet came to Southern California, the Epilepsy Foundation made arrangements for families to meet with her privately and individually. I received confirmation on Sunday that we will have the same opportunity when Dr. Dravet comes this time. We are very excited about the upcoming seminar and excited for the opportunity to meet with Dr. Dravet. We are so fortunate to have such a wonderful , supportive and pro-active Epilepsy Foundation in our area.
Also, as you know our trip to UCLA was yesterday. The good news is that Dr. Shields agrees that our next step is the Ketogenic Diet. Before we begin, Jenelle needs to have a lot of metabolic and organic acid tests. Yes, more poking for blood and bagging for urine, all of which I plan to get done on today. They need to make sure she can be stable on the diet. In addition to these standard tests, we are running a blood test for mitochondrial disease. Dr. Shields still feels that Jenelle most likely does not have mito disease, but rather than put her through the pain of a muscle biopsy, he feels we can test the mitochondria found in her blood to rule it out. A blood test is not as accurate as a muscle biopsy, but if it comes back positive, it may point us in the direction for further testing. As I’ve mentioned before, most forms of mito disease are degenerative and have no cure.
Once the test results come back, which can take 3 to 6 weeks, we will then be able to enter the hospital to start the diet as soon as a bed becomes available (again, this is the RSV time and beds for voluntary admissions are scarce.) When we enter the hospital, we will be there anywhere from 3 to 6 days, depending on how long it takes us to learn the diet and for Jenelle to become stable on the diet. After our exam with Dr. Shields, we met the nurse in charge of the diet and she gave us more information about what to expect. The diet can work to stop her seizures in as little as a few days or a few weeks. They expected to commit 3 months to the diet to see if it works.
I’m sure there is more I could say about the diet, but I’d rather wait until we know more about how it will work specifically for Jenelle. It is more strict than Atkins and the South Beach Diet, and far less nutritional. All food must be weighed before being given to Jenelle. Each child is different, and sometimes the diet works differently for each child. In the meantime while we get Jenelle’s tests started, we are increasing her Felbatol to see if that helps control her seizures. We are still seeing great results from Felbatol, but she is still not seizure free, which is the ultimate goal. There are more drugs we could try, but Dr. Shields thinks the diet is the best next step since we have some stability on Felbatol. As a professional courtesy, we informed Dr. Shields that we were planning to meet with Dr. Dravet. Dr. Shields said that he had no problem with us doing that and that, “Charlotte is an excellent doctor and it will be great to get her thoughts on Jenelle.” I also mentioned that we were waiting to hear from Dr. Haas about his review of her medical records, and Dr. Shields thought that was great as well.
It looks like the coming months will be exciting and busy for us. We hope and pray the diet and the expert opinions will help point Jenelle into a direction that will improve her development and help her reach her full potential.
By the way, please keep the prayers coming for Jenelle’s friend Lily in Arizona. The last update I received on Lily was that she was doing well (no seizures since her fever broke!) but was still having some complications like UTI infection and a cold. Again, here is her website in case you would like to check for updates directly. There is an adorable photo of Lily post-surgery - who knew a child could be so beautiful after something so major! I know they appreciate the many prayers.
Thank you for keeping us in your thoughts and prayers as well - I’ll keep you posted.
Also, as you know our trip to UCLA was yesterday. The good news is that Dr. Shields agrees that our next step is the Ketogenic Diet. Before we begin, Jenelle needs to have a lot of metabolic and organic acid tests. Yes, more poking for blood and bagging for urine, all of which I plan to get done on today. They need to make sure she can be stable on the diet. In addition to these standard tests, we are running a blood test for mitochondrial disease. Dr. Shields still feels that Jenelle most likely does not have mito disease, but rather than put her through the pain of a muscle biopsy, he feels we can test the mitochondria found in her blood to rule it out. A blood test is not as accurate as a muscle biopsy, but if it comes back positive, it may point us in the direction for further testing. As I’ve mentioned before, most forms of mito disease are degenerative and have no cure.
Once the test results come back, which can take 3 to 6 weeks, we will then be able to enter the hospital to start the diet as soon as a bed becomes available (again, this is the RSV time and beds for voluntary admissions are scarce.) When we enter the hospital, we will be there anywhere from 3 to 6 days, depending on how long it takes us to learn the diet and for Jenelle to become stable on the diet. After our exam with Dr. Shields, we met the nurse in charge of the diet and she gave us more information about what to expect. The diet can work to stop her seizures in as little as a few days or a few weeks. They expected to commit 3 months to the diet to see if it works.
I’m sure there is more I could say about the diet, but I’d rather wait until we know more about how it will work specifically for Jenelle. It is more strict than Atkins and the South Beach Diet, and far less nutritional. All food must be weighed before being given to Jenelle. Each child is different, and sometimes the diet works differently for each child. In the meantime while we get Jenelle’s tests started, we are increasing her Felbatol to see if that helps control her seizures. We are still seeing great results from Felbatol, but she is still not seizure free, which is the ultimate goal. There are more drugs we could try, but Dr. Shields thinks the diet is the best next step since we have some stability on Felbatol. As a professional courtesy, we informed Dr. Shields that we were planning to meet with Dr. Dravet. Dr. Shields said that he had no problem with us doing that and that, “Charlotte is an excellent doctor and it will be great to get her thoughts on Jenelle.” I also mentioned that we were waiting to hear from Dr. Haas about his review of her medical records, and Dr. Shields thought that was great as well.
It looks like the coming months will be exciting and busy for us. We hope and pray the diet and the expert opinions will help point Jenelle into a direction that will improve her development and help her reach her full potential.
By the way, please keep the prayers coming for Jenelle’s friend Lily in Arizona. The last update I received on Lily was that she was doing well (no seizures since her fever broke!) but was still having some complications like UTI infection and a cold. Again, here is her website in case you would like to check for updates directly. There is an adorable photo of Lily post-surgery - who knew a child could be so beautiful after something so major! I know they appreciate the many prayers.
Thank you for keeping us in your thoughts and prayers as well - I’ll keep you posted.
Tuesday, February 01, 2005
Update before UCLA
Just wanted to send a quick update before our appointment with Dr. Shields at UCLA this coming Monday. I received word this morning that our UCLA visit has been approved by insurance! YAY! Also, Jenelle's prescription for her "AFOs" (leg & ankle braces) was also approved and we will be going in for measurements on Thursday. Keep your fingers crossed that Dr. Shields will agree to put Jenelle on the Ketogenic Diet. This is something we have not tried, but I think in light of her many medications, something we should consider. Jenelle has been doing very well this past week. As she gets better from that virus she had, we've really noticed that her seizures have decreased as well. She has been "teething" of late but this has not affected her seizures much.
On a side note, for those of you who watch the show "Judging Amy" on CBS (Tuesdays at 10:00 p.m.), there will be an interesting show this evening where "Judge Amy" hears a case about a teenage girl arguing with her parents over risky brain surgery to stop her Epilepsy. I personally do not watch this show, but will be interested to see how they portray the circumstances involving such a decision. I know when Brett and I were faced with making a similar decision for Jenelle, it was a difficult one. At times when we were discussing the possibility, I know I was almost physically ill thinking about it. It will be nice to see them bring Epilepsy into the spotlight (and hopefully in a "good" spotlight.)
And finally (speaking of brain surgery) we'd like to ask for some extra prayers and positive thoughts for Jenelle's friend Lily in Arizona. Lily is 2 months older than Jenelle and had brain surgery yesterday (January 31) to hopefully put a stop to her violent grand mals. Lily has at least two violent grand mals a day lasting almost 10 minutes each, and usually cries inconsolably for a half an hour after. You may have heard me mention Lily before because she and Jenelle have been so similar and they sometimes look like sisters in photos! Her parents are so nice and so strong. Often we support each other as we try to find something to help our girls. Lily's surgery went well, but she had a fever after and has meningitis resulting from the surgery. Please keep her and her family in your prayers that her recovery will go smoothly.
If you would like to read more about Lily, here is her website.
Lily's Website
Thanks again and I'll update after our visit to UCLA next week!
On a side note, for those of you who watch the show "Judging Amy" on CBS (Tuesdays at 10:00 p.m.), there will be an interesting show this evening where "Judge Amy" hears a case about a teenage girl arguing with her parents over risky brain surgery to stop her Epilepsy. I personally do not watch this show, but will be interested to see how they portray the circumstances involving such a decision. I know when Brett and I were faced with making a similar decision for Jenelle, it was a difficult one. At times when we were discussing the possibility, I know I was almost physically ill thinking about it. It will be nice to see them bring Epilepsy into the spotlight (and hopefully in a "good" spotlight.)
And finally (speaking of brain surgery) we'd like to ask for some extra prayers and positive thoughts for Jenelle's friend Lily in Arizona. Lily is 2 months older than Jenelle and had brain surgery yesterday (January 31) to hopefully put a stop to her violent grand mals. Lily has at least two violent grand mals a day lasting almost 10 minutes each, and usually cries inconsolably for a half an hour after. You may have heard me mention Lily before because she and Jenelle have been so similar and they sometimes look like sisters in photos! Her parents are so nice and so strong. Often we support each other as we try to find something to help our girls. Lily's surgery went well, but she had a fever after and has meningitis resulting from the surgery. Please keep her and her family in your prayers that her recovery will go smoothly.
If you would like to read more about Lily, here is her website.
Lily's Website
Thanks again and I'll update after our visit to UCLA next week!
Monday, January 24, 2005
Sickness & Seizures - not fun!
It seems like so much is happening lately its hard to remember where I left off on the last update. Jenelle is fine today, and we are anxiously waiting for our next appointment at UCLA. However, the last two weeks have not been easy for our girl. If you recall, Jenelle and her brother had a bit of the stomach flu on January 4. This episode has really taken a toll on Jenelle and her seizures have increased. On January 10, almost a week after the vomiting incident I noticed that Jenelle was abnormally sleepy on the way to school. That afternoon, Grandma had transported her from school to daycare and called to tell me she was seizing the whole ride. Also, school said she was barely eating and I knew she was doing the same thing that morning, so I called her doctor and asked to bring her in. I thought we should check for ear infection or other problem since Jenelle cannot always tell us what is wrong.
We saw the doctor and he examined her to find her ears were clear, but throat had a "raging infection." We both agreed this was in relation to her stomach bug the week before. As he was about to give me a prescription for an antibiotic, Jenelle had another lengthy seizure in front of him. Dr. Patel decided this was not normal for Jenelle and instructed me to take her to the ER instead for lab work and possible IV fluids. He just wanted to be cautious. We had tried so hard to keep her from the ER the week before, but I agreed it was the best thing to do. Also, we were not going because her seizures were out of control, but rather that they were indicating she just wasn't well. It was raining and almost 5 p.m.. but to our surprise, the ER was empty!
We were seen by a resident who took down Jenelle's extensive history, and of course was unfamiliar with her type of Epilepsy. He examined her throat and said it was fine. This should have been our first clue to run. The resident then left to return a half an hour later informing us that he spoke to the on call neurologist, and he wanted to add a drug called Keppra to the drugs Jenelle was already taking "since it was obvious her current medications were not working." Almost in unison Brett and I replied, "No" and "Did you call UCLA?" to which the resident was most surprised! I don't think he ever had a parent decline his instructions, let alone question his advice. Again, we were not there for her seizures, but rather to make sure she was well. They ran some lab work and long story short the results were normal, but did show that she was either getting over a virus, or just starting one. We left with a prescription we did not intend to fill for Keppra. I spoke to UCLA the following day, and they told us Keppra was not a good drug for her seizure type and to disregard the prescription. I sure am glad we knew what we were doing!
Jenelle continued that week to have more seizures, but started to be more like herself towards the end of the week. Unfortunately, on Friday the 14th, Jenelle had a grand mal in the car on the way to daycare. I was able to pull over to assist her as it didn't look like she was breathing. She was fine and it only lasted a little more than 2 minutes. It was a bummer though because I don't think we've seen a grand mal since early November? Seizures always keep us on our toes - just when you think they are gone! The day after her grand mal, Jenelle has a slight fever of 100.8, so I assume she was still not 100%, which of course is the reason for the recent grand mal.
Like I said at the beginning of this update, Jenelle is doing well now, and we've seen a decrease of seizures these last two days. Attached is a recent photo of the kids at bedtime, ironically the night before Jenelle's grand mal last Friday. It is a rare one in that Jenelle is not sucking her thumb, and you can see her pretty face! This is now my favorite photo - enjoy!
Jenelle and Big Brother Jack!
As always, thank you for the continued prayers. I'll keep you posted!
We saw the doctor and he examined her to find her ears were clear, but throat had a "raging infection." We both agreed this was in relation to her stomach bug the week before. As he was about to give me a prescription for an antibiotic, Jenelle had another lengthy seizure in front of him. Dr. Patel decided this was not normal for Jenelle and instructed me to take her to the ER instead for lab work and possible IV fluids. He just wanted to be cautious. We had tried so hard to keep her from the ER the week before, but I agreed it was the best thing to do. Also, we were not going because her seizures were out of control, but rather that they were indicating she just wasn't well. It was raining and almost 5 p.m.. but to our surprise, the ER was empty!
We were seen by a resident who took down Jenelle's extensive history, and of course was unfamiliar with her type of Epilepsy. He examined her throat and said it was fine. This should have been our first clue to run. The resident then left to return a half an hour later informing us that he spoke to the on call neurologist, and he wanted to add a drug called Keppra to the drugs Jenelle was already taking "since it was obvious her current medications were not working." Almost in unison Brett and I replied, "No" and "Did you call UCLA?" to which the resident was most surprised! I don't think he ever had a parent decline his instructions, let alone question his advice. Again, we were not there for her seizures, but rather to make sure she was well. They ran some lab work and long story short the results were normal, but did show that she was either getting over a virus, or just starting one. We left with a prescription we did not intend to fill for Keppra. I spoke to UCLA the following day, and they told us Keppra was not a good drug for her seizure type and to disregard the prescription. I sure am glad we knew what we were doing!
Jenelle continued that week to have more seizures, but started to be more like herself towards the end of the week. Unfortunately, on Friday the 14th, Jenelle had a grand mal in the car on the way to daycare. I was able to pull over to assist her as it didn't look like she was breathing. She was fine and it only lasted a little more than 2 minutes. It was a bummer though because I don't think we've seen a grand mal since early November? Seizures always keep us on our toes - just when you think they are gone! The day after her grand mal, Jenelle has a slight fever of 100.8, so I assume she was still not 100%, which of course is the reason for the recent grand mal.
Like I said at the beginning of this update, Jenelle is doing well now, and we've seen a decrease of seizures these last two days. Attached is a recent photo of the kids at bedtime, ironically the night before Jenelle's grand mal last Friday. It is a rare one in that Jenelle is not sucking her thumb, and you can see her pretty face! This is now my favorite photo - enjoy!
Jenelle and Big Brother Jack!
As always, thank you for the continued prayers. I'll keep you posted!
Friday, January 07, 2005
First week of 2005 update!
I have been so excited about the good news I have to report that I could hardly stand it. However, knowing our past experiences, I'm not trying to get my hopes too high…. Anyway, lets start with the not so good news first! ;)
Four days into the new year and I am reliving vivid memories of Jenelle's 5 day stay in the hospital from Roto Virus last January. Yep, BOTH kids woke up on Tuesday vomiting! OH JOY! Actually, as a colleague stated - better to have both kids vomiting at the same time for 24 hours instead of 48 hours of kids vomiting! Good point! Jack was sick first, but thankfully at age four he can hold a bowl for himself and has good aim, so he really didn't need much more than some crackers, liquids, a dry place on the couch and the TV. Jenelle on the other hand with her issues was a little scarier. She started vomiting a couple of hours after Jack, and of course, an hour before her next dose of anti-seizure meds. Because of her low muscle tone, I literally had to "help her vomit" with the aid of a bulb syringe (too much information? Sorry!) Brett and I never left her alone because of the risk she has of choking. Later in the morning, I put in a call to UCLA who instructed us to give her Diastat (her emergency use anti-seizure med that is given rectally) in place of her morning meds since it was obvious she wasn't going to keep them down. This worked well and kept her seizures at bay - though she still has been having more seizures than usual. Both our local doctor and UCLA advised us to take her to the ER for IV fluids to help dehydration - however, we really didn't want to go there, so Brett and I decided to give her 1 tsp. of pedilite every 20 minutes until she could hold it down. After a couple of hours, it worked and we avoided the ER. Luckily by the evening both kids were fine and holding down Jell-O! Jenelle has had more than her usual amount of seizures this week since Tuesday, but I attribute it to the bug and missed medication. Other than the bug, she has been doing very well on Felbatol.
Now, the exciting news! We have an appointment to see Dr. Shields again next month, so I put in my usually advance call to UCLA to get the ball rolling for our request for HMO authorization for the visit. Usually it takes a couple of weeks for the HMO to deny the visit, have me appeal, then approve our request. While on the phone with UCLA, I casually asked if their Ketogenic Diet Program was accepting new patients again. Sure enough, they are! Then, the girl who was helping me said, "Why don’t I just put you down for a Keto Diet Consultation with Dr. Shields for your next visit in February?" Sounds good! Our HMO has already informed me (in writing) that they would pay for Jenelle to do the diet at UCLA, so it has already been approved! I'm not sure how quickly things will happen, but I'm hoping we can at least give this diet a try sometime this year. I've always felt that if we try the diet, we'll either find the "magical cure" we've been looking for, or we'll find something to point us in the direction of a diagnosis for Jenelle. Either way, after trying 8 medications where none of which have ever completely stopped her seizures, I think this is a valid next step! At the very least, it is promising to hear that UCLA's program is up and running again! As for the doctor at UC San Diego - I spoke to his nurse on Wednesday, and he still has not reviewed Jenelle's records, though they are the top of "his stack!" I am supposed to call back in two weeks.
I'll update again soon to keep you all posted. Thank you all for continuing to keep Jenelle in your thoughts and prayers!
Four days into the new year and I am reliving vivid memories of Jenelle's 5 day stay in the hospital from Roto Virus last January. Yep, BOTH kids woke up on Tuesday vomiting! OH JOY! Actually, as a colleague stated - better to have both kids vomiting at the same time for 24 hours instead of 48 hours of kids vomiting! Good point! Jack was sick first, but thankfully at age four he can hold a bowl for himself and has good aim, so he really didn't need much more than some crackers, liquids, a dry place on the couch and the TV. Jenelle on the other hand with her issues was a little scarier. She started vomiting a couple of hours after Jack, and of course, an hour before her next dose of anti-seizure meds. Because of her low muscle tone, I literally had to "help her vomit" with the aid of a bulb syringe (too much information? Sorry!) Brett and I never left her alone because of the risk she has of choking. Later in the morning, I put in a call to UCLA who instructed us to give her Diastat (her emergency use anti-seizure med that is given rectally) in place of her morning meds since it was obvious she wasn't going to keep them down. This worked well and kept her seizures at bay - though she still has been having more seizures than usual. Both our local doctor and UCLA advised us to take her to the ER for IV fluids to help dehydration - however, we really didn't want to go there, so Brett and I decided to give her 1 tsp. of pedilite every 20 minutes until she could hold it down. After a couple of hours, it worked and we avoided the ER. Luckily by the evening both kids were fine and holding down Jell-O! Jenelle has had more than her usual amount of seizures this week since Tuesday, but I attribute it to the bug and missed medication. Other than the bug, she has been doing very well on Felbatol.
Now, the exciting news! We have an appointment to see Dr. Shields again next month, so I put in my usually advance call to UCLA to get the ball rolling for our request for HMO authorization for the visit. Usually it takes a couple of weeks for the HMO to deny the visit, have me appeal, then approve our request. While on the phone with UCLA, I casually asked if their Ketogenic Diet Program was accepting new patients again. Sure enough, they are! Then, the girl who was helping me said, "Why don’t I just put you down for a Keto Diet Consultation with Dr. Shields for your next visit in February?" Sounds good! Our HMO has already informed me (in writing) that they would pay for Jenelle to do the diet at UCLA, so it has already been approved! I'm not sure how quickly things will happen, but I'm hoping we can at least give this diet a try sometime this year. I've always felt that if we try the diet, we'll either find the "magical cure" we've been looking for, or we'll find something to point us in the direction of a diagnosis for Jenelle. Either way, after trying 8 medications where none of which have ever completely stopped her seizures, I think this is a valid next step! At the very least, it is promising to hear that UCLA's program is up and running again! As for the doctor at UC San Diego - I spoke to his nurse on Wednesday, and he still has not reviewed Jenelle's records, though they are the top of "his stack!" I am supposed to call back in two weeks.
I'll update again soon to keep you all posted. Thank you all for continuing to keep Jenelle in your thoughts and prayers!
Friday, December 31, 2004
What is means to me ...
"Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see it is what you would have wanted had you known." - Garrison Keillor
This quote has meant a lot to me this year. Earlier in the year when I found it on the internet (attached to a friend's signature at my Special Needs Support Group message board), I printed it out in big, bold letters and posted it to the door of my office, where I was sure to see it each day. I started our year end Holiday Letter this year with this quote, but failed to really expand on what it truly means to me.
I certainly don't feel fortunate or lucky to have a handicapped child like Jenelle. At times it is a burden that I think few truly understand. On one hand, the worry, the medications, the therapy get to be too much. There are time I wish she would just hold her bottle on her own, or sit up... even just chew food! Every day is a battle - a fight against seizures, a hope for improvement, for a small smile or laugh. This is certainly not a life anyone would choose on their own.
However, when you look at the bigger picture, how her life has changed mine and those around her, I do feel lucky. Every parent wants their child to be the best, to do things they never did, and to enjoy life to the fullest. How many can honestly say their child makes them a better person? Not because their child is successful, bright, or wealthy. My child makes me a better person because I now have more patience, I now accept and see disabilities differently, and because of her I've had the opportunity to meet other parents who are just as strong as myself and even stronger. Jenelle makes me a better Mom, and a better human being.
"it is what you would have wanted had you known"... Had I known my child would have faced such difficulties in this world at such a young age, I'm not sure I would have chosen to keep her. Thinking of having more children spreads fear in my body - a fear of re-living the hurt and disappointment of mourning the loss of the "perfect" child. But knowing what I know now... of course having a handicapped child is what I would have wanted. Who wouldn't want a child that made you stronger, made your a better human, and made you love more than you ever thought possible? Isn't that what every parent wants? I think that is what I have, even though getting there was bittersweet.
Best wishes to you all in the coming New Year! Let's hope you are lucky enough to realize that what you have is what you would have wanted anyway.
This quote has meant a lot to me this year. Earlier in the year when I found it on the internet (attached to a friend's signature at my Special Needs Support Group message board), I printed it out in big, bold letters and posted it to the door of my office, where I was sure to see it each day. I started our year end Holiday Letter this year with this quote, but failed to really expand on what it truly means to me.
I certainly don't feel fortunate or lucky to have a handicapped child like Jenelle. At times it is a burden that I think few truly understand. On one hand, the worry, the medications, the therapy get to be too much. There are time I wish she would just hold her bottle on her own, or sit up... even just chew food! Every day is a battle - a fight against seizures, a hope for improvement, for a small smile or laugh. This is certainly not a life anyone would choose on their own.
However, when you look at the bigger picture, how her life has changed mine and those around her, I do feel lucky. Every parent wants their child to be the best, to do things they never did, and to enjoy life to the fullest. How many can honestly say their child makes them a better person? Not because their child is successful, bright, or wealthy. My child makes me a better person because I now have more patience, I now accept and see disabilities differently, and because of her I've had the opportunity to meet other parents who are just as strong as myself and even stronger. Jenelle makes me a better Mom, and a better human being.
"it is what you would have wanted had you known"... Had I known my child would have faced such difficulties in this world at such a young age, I'm not sure I would have chosen to keep her. Thinking of having more children spreads fear in my body - a fear of re-living the hurt and disappointment of mourning the loss of the "perfect" child. But knowing what I know now... of course having a handicapped child is what I would have wanted. Who wouldn't want a child that made you stronger, made your a better human, and made you love more than you ever thought possible? Isn't that what every parent wants? I think that is what I have, even though getting there was bittersweet.
Best wishes to you all in the coming New Year! Let's hope you are lucky enough to realize that what you have is what you would have wanted anyway.
Subscribe to:
Posts (Atom)
Posts
