We met with Dr. Phillips today as a regular appointment for Jenelle, but also as a follow up to her recent hospital stay. The short story is, he is out of ideas and wants us to go back to see Dr. Shields at UCLA to see what he thinks about Jenelle.

Some of Jenelle's recent metabolic tests (taken in January) came back abnormal, but nothing really pointed to any real diagnosis. In fact, we've repeated the same metabolic tests 3 times, and each time they were abnormal, but the abnormal areas were different with each test. He has no clue why this is!

He reviewed each and every page of Jenelle's 48 hour EEG and said that there were no seizures, even though I the seizures that I saw. He disagreed with Dr. Trice in that he doesn't think the seizures are coming from deep in the brain and therefore not registering on the EEG. When we describe her seizures, especially her new grand mals which we didn't catch on the latest EEG, he agrees that it sounds like a seizure, but he is baffled as to why they don't register on the EEG. He even said in reviewing the results, he thought he saw some seizure activity, but then on video, she did not appear to be seizing in the normal fashion associated with such an abnormal pattern. He put us on a new drug called Klonopin (which has a component of valium in it), and we are going to take her off the Topamax because it clearly isn't working.

We discussed the Ketogenic diet. He said it is not an option right now because she has too metabolic instabilities. The diet can cause serious metabolic abnormalities, so it is best to wait for now. I disagree somewhat with this because I've read the diet is only used for kids with difficult to control seizures. If her seizures are so uncontrollable, wouldn't that be all the more reason to try to diet? We understand his decision.

Dr. Phillips has often suggested that I be a stay at home Mom with Jenelle. We talked about this and I asked him directly if he was keeping something from us. He said he wasn't keeping anything from us, but felt that some kids do better with the one on one attention. We then talked about Jenelle's developmental regression. He is very worried about this, and feels that she is going in the wrong direction. Jenelle's PT has noted that she is weak on her right side, and I've noticed that she is no longer rolling from tummy to back, something she used to do with ease. This could be because of the grand mals, or because Jenelle has an undiagnosed degenerative neurological condition. The later of course is the worst case scenario, but it does mean that if her condition is degenerative, she will regress until she dies. He said we weren't there yet, but he is concerned because she is regressing, and since we don't have a diagnosis, this (the degenerative neurological condition) is not something we can rule out. He also said that he would strongly advise staying home with Jenelle so we didn't have any regrets should an early death be the outcome. I told him about some of the new things Jenelle was doing. He was happy to hear it and told me that I really only tell him the bad stuff. He felt much better about things since she is progressing in other ways. Of course we aren't at the worst case scenario yet, and I have no regrets working because Jenelle is getting more treatment at daycare and her special school than I could give her if we stayed at home. Those therapies benefit her more.

I put in a call to Dr. Shield's nurse at UCLA who was gone. Hopefully we'll hear from her soon and we can get in quickly. We are going to see Dr. Phillips again in 3 weeks because he wants to closely monitor Jenelle on the Klonopin. I am also looking into places outside California like Johns Hopkins or Mayo Clinic to see if they can review her records. I think at this point Jenelle is such a mystery, I'm sure getting outside ideas about her health may be productive.

Again, Jenelle keeps us on our toes. After our event three weeks ago at the ER when she had 4 grand mals in a day, Jenelle went 7 days without a seizure! We were thrilled, and hoped that her new medication (Topamax) was working. However, last Tuesday, Jenelle woke herself with another grand mal that lasted almost 3 minutes. I stayed with her that morning, and she seemed fine. Later that day, during a session of Physical Therapy, her therpist mentioned that she noticed some weakness on Jenelle's right side. Jenelle has always been weak on her right side, but had improved. Then, Jenelle had another grand mal on Thursday and Dr. Phillips sent us to the ER. New seizures and weakness on one side guaranteed us a CT scan and hospital stay.

Jenelle was admitted to Children's Hospital Thursday night, and stayed until Monday for observation. In addition to her CT scan, they ran a 48 hour Video EEG and of course according to Murphy's Law, she did not have a grand mal for them to observe. Her "usual" myoclonic seizures had increased, and some lasted as long as 2 minutes. I marked many of them on the first 24 hours of the EEG, but according to our Neuro, they did not show up as seizures on the EEG. This could simply be because her seizures are coming from deep inside her brain and thus cannot register on the EEG. We're not sure what that means. Although I feel we left the hospital without any answers, Brett pointed out that we have some relief in that her CT scan did not show a stroke, tumor or brain bleed. He is absolutely right in that sometimes no news is good news. Jenelle was also teething over the previous weekend and that could have lowered her seizure threshold. Another possibility is that as Jenelle "grows up", her seizures will change as well and we just have to get used to this type of seizure. They increased her Topamax from 15mg a day to 45 mg a day, and she seems to be stable.

We will see Dr. Phillips again this Friday, and hopefully I will have more to report. Jenelle did make it to her first day at her new school last Wednesday, but I don't know how it went because she missed her second day. I'll try to update on that as well.

For the past few weeks, we've been trying to get Jenelle healthy so she can start the Ketogenic Diet. On February 2 at her follow up for the "roto virus", she was diagnosed with an ear infection. At her follow up appointment for that ear infection just last Tuesday, the doctor noted that the ear was still infected. Poor baby. Then on Wednesday, we had a big scare.

Jenelle's physical therapist called me from her appointment with Jenelle and informed me that she had had a seizure that lasted over 2 minutes. This is most unusual for Jenelle because her seizures usually last only seconds and are usually over before you can blink. The therapist told me that her legs and arms jerked in what she considered to look like a "grand mal." Jenelle fell asleep immediately after the seizure, and seemed OK. I then emailed Dr. Phillips to find out the protocol, and to see if he wanted to see her. Most doctors consider a seizure a medical emergency if it lasts longer than 5 minutes. Considering Jenelle has never had seizures of that length, we were concerned. After an hour I still hadn't heard from Dr. Phillips, so I called daycare to check on her. They told me she had another seizure lasting over 2 minutes that was similar to the one earlier… except this time she was "screaming" during the seizure. I emailed Dr. Phillips again, and put in a call to his nurse to have him paged.

When I finally got a call from Dr. Phillips, he told me to get Jenelle home and observe her because he trusted our opinion of her status in that we can usually tell when her seizures are serious. I then realized that I had missed a dose of her Vigabatrin the night before, so we assumed that may have caused the increase in seizures that we were seeing. Brett picked up the kids and when I met him at home Jenelle seemed fine. She was alert and even rolled over to look at me when I said hello. I began to play with her for about 20 minutes, then I got to witness the new seizure for myself. It was frightening to say the least. Here eyes rolled into her head, her face was frozen and contorted, and her body was stiff and ridgid. Her "moan" was not a normal noise for Jenelle, but rather low and gutteral. After her body stopped being ridgid, her legs began to jerk and arms were flailing. In my email update to family, I spared the details, but am giving them here as this may help others with children who have seizures. Frankly, ?no one should see a child in this way. I then screamed for Brett who was in the other room and although he didn't see what happened, he said he heard it from the other room and was frightened all the same. I then spoke to Dr. Phillips again, and he thought it was a good idea to go to the ER to get checked out and make sure her ear infection wasn't worse.

The ER was packed on a rainy night, but we were taken ahead of many patients and still had to wait 3 hours to be seen. Jenelle had one more of the "new seizures" while we were waiting as well as many of her normal seizures. They were going to give her some IV fluids and take blood for a white blood cell count, but after having 5 nurses attempt unsuccessfully just to locate a vein, the ER doctor decided just to treat her symptoms rather than torture her. She was given a shot for the ear infection which they said was bad, but they'd seen worse, and a shot of Ativan (which is basically Valium) to keep her from seizing during the night. Dr. Phillips had instructed us to increase both her Topomax and Vigabatrin to see if that helped. Amazingly, she hasn't had a seizure since last Wednesday night, so we must be doing something right! When I emailed Dr. Phillips today with an update, he said to keep her at the same dosage of meds to see how she continues to do. Ultimately it was the ear infection and my missing a dose that caused this "new" seizure that we were seeing. Amazing how her stability rests on so many factors.

I spoke to another parent yesterday of a child with seizures, and she told me her son has seizures sometimes that last longer than 30 minutes. I hope we never have to see that in Jenelle. As soon as she finishes her second course of antibiotics and gets the "all clear" from her doctor, we should be ready to start the Ketogenic Diet. I know that all of you continue to pray for Jenelle, but if you could send us extra special prayers and positive thoughts that she stays healthy so we can start the diet soon, we'd appreciate it!

Jenelle is set to start her new school the first week of March. I will update again once that has started. Thanks so much for the continued prayers and positive thoughts!

Well it has been a tough 2 weeks for all of us, but yesterday we got some great news that really improved things. A few weeks ago, I toured the Blind Children's Learning Center in Tustin, which is a facility that offers therapy services to blind children, partially blind children and children with special needs. They offer an infant development program from 9 to 12:30 each day, as well as daycare before and after. I was amazed at how wonderful this facility was. In some of the classes, the ratio was one teacher to one student, and sometimes one teacher to two or three. Their volunteer support was amazing, and there were many people helping out. It is a wonderful environment for children like Jenelle, so I asked Regional Center to consider approving Jenelle for the program.

Yesterday, I spoke to Jenelle's case worker from Regional Center they have approved 2 days a week of the infant development program for Jenelle! I was hoping for at least a day, so 2 days is fantastic! Because Regional Center does not provide "duplicative" services, unfortunately this means Jenelle will no longer be seeing the Occupational Therapist we started with back in August. Her OT is wonderful and really loves Jenelle. I broke the news to her yesterday, and she was sad, but also very happy for Jenelle as this program will be of great benefit to her. In fact, Jenelle's occupational therapy will increase from only an hour a week to 7 hours a week! She will still keep the same Physical Therapist and will still get that therapy 2 hours a week. Also as I mentioned, the Blind Children's Learning Center has daycare before for before and after the program, and of course, this daycare is more specialized than the daycare Jenelle is currently at. We love our daycare, and they have really done so much to work with Jenelle and involve her in their activities. She will be staying there the other two days with her brother, and with Grandma on Tuesdays.

When I first met with the Blind Children's Center, I was worried that Jenelle wouldn't qualify because of her vision. Fortunately they have children with all types of special needs. Jenelle's vision is "delayed" and we still have not determined whether or not she will suffer Cortical Visual Impairment (where the brain does not compute what it sees) which is very common among children with seizures, so this is really the best place for her.

Since getting out of the hospital last week, Jenelle started to regress a little and show a "doped up" state. I spoke to her Neurologist at the beginning of this week, and he suggested it might be the new drug Topomax and we decreased her dose by half. Apparently that did the trick, and she has been her usual self ever since. At their follow up appointment with her pediatrician for the Roto Virus, the doctor noticed that both kids have ear infections. You wouldn't even notice it in Jack, but not that I realize her ear is infected, it explains why Jenelle has been a little cranky of late, and has been waking at night. As soon as she is healthy, we are going to meet with Dr. Phillips to start the Ketogenic diet.

One last good thing I think I forgot to mention in my last update is that Jenelle's last CT Scan showed improvement! On her original MRI and her CT scan back in October, Jenelle has some spaces in a certain part of her brain. They were noticeable, but apparently within normal limits - something they were watching. Her last CT scan showed that these spaces are smaller, which is definitely great news!

Jenelle got home today from CHOC and is doing much better. She did test positive for the Roto Virus which we understand is very contagious. Symptoms include vomiting, high fever and the runs, all of which she had... and since last night, Jack has had the high fever and runs as well.

As mentioned, we took advantage of Jenelle's hospital stay and ran lots of tests. Dr. Phillips introduced us to a new doctor on staff who is a Metabolic Specialist and Genetic Doctor. I've forgotten his name, but I'm told he is World Famous. We met with him on Monday evening and he asked us a lot of questions, then wrote many test requests for Jenelle. He agrees with Dr. Phillips in that her problem is most likely metabolic. He also told us that some metabolic problems can be treated, but there are some that cannot. The "silver lining" if anything in all this is that you get better metabolic test results when the child is ill.

Jenelle's latest EEG showed that she is still having Infantile Spasm like seizures, but also Myoclonic type seizures of which there are more. So, the Vigabatrin is not working and I spoke to UCLA this morning and they instructed us to wean her off of it completely. Dr. Phillips started her on a new drug called Topomax which may help the Myoclonic type seizures. Jenelle still has 2 months to go until she can even start preliminary testing for UCLA's Ketogenic Diet Program, but she may be able to start the diet in as soon as 2 to 3 weeks at CHOC. So, we'll most likely stay at CHOC.

Jenelle started to try to hold her bottle again last night and tonight - a sign I knew that she was getting better.

Jenelle was admitted to Children's Hospital of Orange County yesterday. She woke up vomiting and because she isn't hold down (or getting) her seizure meds, her seizures have increased. Later at the ER she began to run a fever. They believe she has the stomach flu (Roto virus) which for any "normal" child would be no big deal, but is much more serious for Jenelle. She is not very responsive, so she was admitted until we can control the seizures better.

As of this morning, Jenelle is holding down some clear liquids, but still has a fever that is being controlled with Tylenol. We spoke to Dr. Phillips today and he has a "new" plan of action. She is going to have a CT scan, spinal tap, some bloodwork and a video EEG for possibly 48 hours. Because children can "grow out of" Infantile Spasms after the age of 1, we think Jenelle is no longer having those types of seizures. He is going to run the EEG to figure out exactly what is going on, and we'll most likely wean her Vigabatrin and start a new medication that is more appropriate for whatever seizure type she has. He also feels strongly that Jenelle's underlying issues are metabolic. He said that usually metabolic tests show better results when the child is sick, so now is the best time to do tests. We obviously can't start Ketogenic diet until she is better. She most likely will be in the hospital until the end of the week.

Prior to Sunday, I was about to send an update to everyone to tell you how much Jenelle has been improving. She is starting to use her right hand more, and even sucked her right thumb, and she used both hands to hold her bottle last weekend. Also at PT she began to take some "assisted" steps. She was very alert, smiling and laughing a lot. It was such wonderful progress. Anyway, I'll update when I can. Please keep us in your thoughts and prayers!

Happy New Year!

Well, it seems we're all recovering from the flu, and Brett still has not been a victim ( knocking on wood!) It seems I had the longest recovery, but I'm almost back to health!

Jenelle is stable for the most part, but unfortunately is still having seizures. She has been off Phenobarbital completely since December 29, and is only taking Vigabatrin. Since taking her off the Pheno, I've noticed she is much more alert, and she is experiencing better sleeping patterns (YAY!) Our next step is the Ketogenic Diet and Jenelle is on a 4 month long waiting list for UCLA's program but may be able to start it sooner at CHOC with Dr. Phillips.

What is the Ketogenic Diet? A lot of friends and family have been asking that question, and now that I've read some books, I can finally give you an educated answer! The Ketogenic Diet is similar to Atkins in that her diet will consist of mostly proteins and no carbohydrates. The difference is that the diet must begin in the hospital with a "fasting period" and Jenelle will not be allowed to eat food or water for 2 days. When the body is fasting (or in starvation mode) it produces Ketones. They don’t know how it works, but the increased Ketones (or Ketosis) stops the seizures in most Epilepsy patients. In fact, a good percentage of children can often become seizure free, and can reduce or wean their medications. After her Ketones reach the appropriate level, they slowly introduce food back into her diet - mostly proteins and no carbs. Also she must take in a specific amount of food each day, all of it must be measured, weighed and carefully calculated to maintain the Ketone level, but also provide appropriate nutrition to keep her going. A lot of the food she is allowed is cream, butter, eggs, egg nog and the like. Its going to be difficult to administer on a daily basis, but if it results in stopping all of her seizures, it will be worth it.

Jenelle had a clinical evaluation with an orthopedic pediatrician and genetic doctor for California Children's Services on Monday, January 12. The good news is that Jenelle did not qualify for services with CCS. I know it sounds strange that we are celebrating that she didn't qualify for a social service, but there are two very good reasons for this… one is that CCS usually accepts orthopedic cases, and for lack of better description, usually the very extreme handicapped. So in essence, it appears there is hope for Jenelle in that area. Also, if Jenelle had qualified for CCS, we would have had to transfer most of her therapy to CCS, thus starting all over again with new therapists. We are very happy with her current therapists, and am thankful we do not have to change.

At this evaluation, the Genetic doctor (Dr. Touran Zadeh) told me she recently ran tests for Jenelle and recognized her name (remember the metabolic tests we had to re-do back in December?) Dr. Zadeh felt strongly that Jenelle's issues may be metabolic in nature (which means dietary.) She felt we'd have very good results with the Ketogenic Diet. The main reason Jenelle did not qualify was that her mobility issues are most likely a result of a problem in her brain or a metabolic issue and not from a genetic problem. This is also good news in case we decide to have more children. The chances of having another child like Jenelle are probably slim, but we still should pursue further Genetic Testing to be certain.

Although she is having seizures, Jenelle continues to make small progress in her therapy. She has recently started to use her right hand, specifically she will suck her right fingers. She is also holding herself up better, but still cannot sit up. Her tone is improving, but all of this is still slow. We are looking into getting a "stander" for Jenelle to help her bone density and vestibular issues. Also she will need a more "adaptive" stroller in the days to come, which is something between a regular stroller and a wheelchair. We are currently starting the process of ordering these items with her Therapist - the prices of each are frightening! I'm almost certain our insurance will cover some of it.

So, that's it for now. We hope you are having a wonderful start to this new year. I am excited for this year in that I know Jenelle is going to continue to make new improvements! Thanks you for the continued prayers and support - it means so much!