The results of our 24 hour EEG showed that Matthew is having a lot of seizures. We already knew that, however, we learned that his seizures are all over the brain. They used to be mostly in the visual part of his brain.
The doctor suggested that we follow up with an Epilepsy doctor instead of a regular Ped. Neurologist. Epilepsy doctors mostly deal with seizures, Ped. Neuro's deal with anything brain related (headaches, Cerebal Paulsy, etc). He said that Matthew may have to deal with seizures the rest of his life. The dr took him off his Tegatrol. He said that Tegatrol may increase seizures, especially the type that Matthew has. We are also discontinuing the medication that he was put on when we got here from the Ped. Neuro at Children's (Depakote). He said that it doesn't seem to be working and it has bad side effects (1 in 600 get liver damage). We have started a new medication called Banzel. It has been FDA approved for about 1 year now.
The doctor gave us options about a Vagus Nerve Stimulator implant and discussed the Ketogenic Diet. The doctor was very good, I feel very comfortable with him, but he suggested that whom ever we decide to see long term work with us on those options.
The doctor used to work in Birmingham, AL. He was familiar with our Ped. Neuro in Pensacola because Birmingham was the closest Epilepsy doctor to Pensacola. That's a 41/2 drive each way. We are looking into our options about seeing what we can do so Matthew can be followed up by a Ep dr and not have to drive 9 hours round trip, especially because if we do the Vegus nerve or diet, he will have to be monitored very closely.
Monday, June 22, 2009
Monday, June 15, 2009
Opthamologist
One of the many doctors we saw in patient was a opthamologist. When people gather Matthew's history and I explain that he is not tracking/looking at us well, they ask if he's ever seen an opthamologist. I always say no, but nobody ever has followed up with suggesting an exam.
The RN came in the room at 5AM to dilate his eyes and by 610 AM, the opthamolgist came in. I'm sure I looked great. He examined Matthew's eyes and he said there is no damage to his eyes nor any structural damage.
The opthamologist said that Matthew would be a candidate for the organization Center for the Blind. The doctor said he hates the name of the organization because it's for anyone visually impaired.
The organization has already contacted me and they will be coming in my home to do an assessment to see if they will be able to help with visual therapy/activities.
The RN came in the room at 5AM to dilate his eyes and by 610 AM, the opthamolgist came in. I'm sure I looked great. He examined Matthew's eyes and he said there is no damage to his eyes nor any structural damage.
The opthamologist said that Matthew would be a candidate for the organization Center for the Blind. The doctor said he hates the name of the organization because it's for anyone visually impaired.
The organization has already contacted me and they will be coming in my home to do an assessment to see if they will be able to help with visual therapy/activities.
Sunday, June 14, 2009
Phoenix Children's~Day 1
Wednesday we got the call that there was a bed available at the Epilepsy unit for us. Once we got checked in and admitted, they started the EEG monitor right away. It was video recorded, so the lights had to be on the whole time, including at night. There was a button I was supposed to push when he would have a seizure, that way when the doctor reviewed the EEG, he could see exactly where the seizures were to help pinpoint them.
Matthew saw several different doctors. He saw a general pediatrician, Epilepsy doctor, eye doctor, several residents and genetics doctor. The genetics doctor wanted to take more samples than we had done in Mobile. Luckily I had a business card for the Genetics doctor we saw in Mobile, so they were able to coordinate. The staff all thought I was very organized. It was luck, I never took the card out of my wallet from the appointment.
Steve came and visited with us for a few hours. The Patient Care Tech sat in our room while Steve and I went to the cafeteria to get dinner (which was pretty good for being hospital food). I was unable to leave Matthew alone at all while he was on the monitors, so if I needed to go get water next door or anything else, I had to call someone in to sit with Matthew. Staff were always nice and made it very easy to ask for help.
Matthew was teething horribly. He cried so much his voice went horse. He didn't mind the EEG electrodes on his head, but he was pretty cranky in the evenings. A social worker came in to see us and Matthew was having a meltdown. I don't know what she really said, but she seemed like she had one foot out the door to go home for the night anyway.
The day flew by, except for the teething meltdowns. We had a room to ourselves, so it was nice not to have to share with another patient. It was set up for two patients, so we had a large room. I had to remember anything I did, was on camera, sound too.
Matthew was not too hungry, but he did drink his milk. Neither Matt nor I slept well that night. He would wake up a lot and I had a hard time sleeping because (1) of the bring lights and (2) random noises/phone ringing/people talking at the nurses station.
Matthew saw several different doctors. He saw a general pediatrician, Epilepsy doctor, eye doctor, several residents and genetics doctor. The genetics doctor wanted to take more samples than we had done in Mobile. Luckily I had a business card for the Genetics doctor we saw in Mobile, so they were able to coordinate. The staff all thought I was very organized. It was luck, I never took the card out of my wallet from the appointment.
Steve came and visited with us for a few hours. The Patient Care Tech sat in our room while Steve and I went to the cafeteria to get dinner (which was pretty good for being hospital food). I was unable to leave Matthew alone at all while he was on the monitors, so if I needed to go get water next door or anything else, I had to call someone in to sit with Matthew. Staff were always nice and made it very easy to ask for help.
Matthew was teething horribly. He cried so much his voice went horse. He didn't mind the EEG electrodes on his head, but he was pretty cranky in the evenings. A social worker came in to see us and Matthew was having a meltdown. I don't know what she really said, but she seemed like she had one foot out the door to go home for the night anyway.
The day flew by, except for the teething meltdowns. We had a room to ourselves, so it was nice not to have to share with another patient. It was set up for two patients, so we had a large room. I had to remember anything I did, was on camera, sound too.
Matthew was not too hungry, but he did drink his milk. Neither Matt nor I slept well that night. He would wake up a lot and I had a hard time sleeping because (1) of the bring lights and (2) random noises/phone ringing/people talking at the nurses station.
Thursday, May 28, 2009
http://www.phoenixchildrens.com/medical-specialties/childrens_neuroscience_institute/ped-epilepsy-program.html
I tried to paste that link in the blog, but it wouldn't allow me. That is the program that Matthew is going to be going to the week of June 8th. The clinic called me and offered us to come in next Tuesday (June 2nd). Normally I would be able to drop everything and go, however, my parents are flying into Arizona to visit with Matthew and me. They are only staying until Friday AM, so Matthew and I will be going in the following week...June 8th.
They admit 5 patients Monday morning. Some patients stay for 24 hours, other stay up to 5 days. As soon as a bed becomes available, they will contact us...most likely that Tuesday AM, after they discharge patients.
I will have to stay with Matthew 24 hours a day. It's not a big deal, I would do it anyway.
He has been on the new medication (Depakote) for about 15 days now. I feel it is helping, but we're still seeing seizures daily. They do not seem to be as intense.
Matthew is mastering rolling. In fact, I can't leave the room for more than a few minutes or he'll roll into the table or couch and bump his head.
They admit 5 patients Monday morning. Some patients stay for 24 hours, other stay up to 5 days. As soon as a bed becomes available, they will contact us...most likely that Tuesday AM, after they discharge patients.
I will have to stay with Matthew 24 hours a day. It's not a big deal, I would do it anyway.
He has been on the new medication (Depakote) for about 15 days now. I feel it is helping, but we're still seeing seizures daily. They do not seem to be as intense.
Matthew is mastering rolling. In fact, I can't leave the room for more than a few minutes or he'll roll into the table or couch and bump his head.
Luke Air Force Base Case Manager
I talked to Matthew's C.M on Tuesday. What a difference from the C.M in Pensacola who never followed up with us when we asked for help! Dianne got the scoop from the EEG & Neuro appointment. She seemed a bit frustrated with the result. She was happy that Matt was referred to the Epilepsy Clinic and said she's call them when we got off the phone so she could get the status of referral (by they way, the Epilepsy clinic called me within hours of me talking to Dianne).
Dianne felt that we are at the highest level of care at Phoenix Children's Hospital. She felt that if we do not get a good plan of action/results from the Epilepsy Clinic, she will help us to get to the next level of care. That level of care would probably be some sort of Neuro Institute....maybe in California. She said that our insurance will pay for the flight, hotel, food, etc because we have exhausted our options in Phoenix. There is another hospital out here that has a Ped. Neuro department, but it is equal to PHC, so instead of going there, we'll go to the next level up.
I am so relieved. I finally feel like we are going forward. Dianne told me that in Pensacola, we could have our insurance help us get to the next level of care (most likely Miami). I had no idea, so this did frustrate me a bit, but I'm glad we came to Arizona because I truly feel that we are on the right road now.
Dianne felt that we are at the highest level of care at Phoenix Children's Hospital. She felt that if we do not get a good plan of action/results from the Epilepsy Clinic, she will help us to get to the next level of care. That level of care would probably be some sort of Neuro Institute....maybe in California. She said that our insurance will pay for the flight, hotel, food, etc because we have exhausted our options in Phoenix. There is another hospital out here that has a Ped. Neuro department, but it is equal to PHC, so instead of going there, we'll go to the next level up.
I am so relieved. I finally feel like we are going forward. Dianne told me that in Pensacola, we could have our insurance help us get to the next level of care (most likely Miami). I had no idea, so this did frustrate me a bit, but I'm glad we came to Arizona because I truly feel that we are on the right road now.
Phoenix Children's Appointment
We were so excited to go in and see the DR. We got there a bit early, however, she was running 45 minutes behind. Matt was still sick with a cold, so it was a long afternoon.
The Dr came in. She seemed friendly. She got a brief history~I offered her a copy of Matt's medical records from FL and she was not interested. She basically said there are enough papers floating around the office, they don't need more. That kind of bothered me, but I guess she's just being honest, right? She received two phone calls during the appointment. I understand they were crisis calls, but it still bothered me. She discussed the medication Depakote and I agreed to try the medication.
She turned to me and said, "OK, follow up in 4 months". Whoa...wait a minute. 4 months?! I want to be back home in FL by then. I explained we aren't in PHX long term. She knocked the appointment to 2 months. In my head I had already decided to call my case manager to discuss this, so it didn't matter. I'd either ask to switch to another doctor or just reschedule the apointment myself for a month. She said she was thinking about referring him to Epilepsy clinic and for an EEG. She wasn't sure, but I interrupted and said we'd be interested in that option.
Depakote in a good medication, but it isn't usually prescribed to kiddos under 2 years old. Although Matthew is the size of a 4 year old, I was still concerned and bothered that she didn't want to follow up until 4 months. It can cause liver damage and weigh gain. So far it hasn't changed his appitite, he still is a light eater...Thank goodness because he's over 30 pounds...just tall and thin.
We got our EEG a week later and two days after that, the Dr personally called me to discuss the results. Maybe we got off on the wrong foot? She wanted me to call her a few days later to update her on his progress with the Depakote.
The Dr came in. She seemed friendly. She got a brief history~I offered her a copy of Matt's medical records from FL and she was not interested. She basically said there are enough papers floating around the office, they don't need more. That kind of bothered me, but I guess she's just being honest, right? She received two phone calls during the appointment. I understand they were crisis calls, but it still bothered me. She discussed the medication Depakote and I agreed to try the medication.
She turned to me and said, "OK, follow up in 4 months". Whoa...wait a minute. 4 months?! I want to be back home in FL by then. I explained we aren't in PHX long term. She knocked the appointment to 2 months. In my head I had already decided to call my case manager to discuss this, so it didn't matter. I'd either ask to switch to another doctor or just reschedule the apointment myself for a month. She said she was thinking about referring him to Epilepsy clinic and for an EEG. She wasn't sure, but I interrupted and said we'd be interested in that option.
Depakote in a good medication, but it isn't usually prescribed to kiddos under 2 years old. Although Matthew is the size of a 4 year old, I was still concerned and bothered that she didn't want to follow up until 4 months. It can cause liver damage and weigh gain. So far it hasn't changed his appitite, he still is a light eater...Thank goodness because he's over 30 pounds...just tall and thin.
We got our EEG a week later and two days after that, the Dr personally called me to discuss the results. Maybe we got off on the wrong foot? She wanted me to call her a few days later to update her on his progress with the Depakote.
Monday, May 11, 2009
Phoenix
The day after Chris was supposed to deploy, we got word that he was not deploying. We had already scheduled our utilities to shut off, my trip was planned and we were ready to go. We made the decision for Matthew and I to still go to Phoenix for treatment out there. Steve (Chris's best friend and the guy renting our house) drove across country from FL to AZ. It was a long trip with a sick baby. He had a bad cold and was throwing up. We made it though....3 days. We stopped twice for the night. We had to make frequent stops to feed Matt, change Matt and give him meds.
We have arrived in AZ and things are going well so far, except for our colds again. Matt was running a fever of 103.5 consistently for a few days. He was throwing up his seizure meds and Tylenol. I took him to Phoenix Children's Hospital (PCH) at midnight last Wednesday, well, actually Thursday. They were very nice there, but just said it was a virus and sent us on our way. I figured it was, but with his seizures medication, I'm always careful.
Thursday during the day, we got word that our insurance had been transferred. I contacted the pediatrician's office to start the referral process. The RN was very nice. She gathered a lot of history and referred us to a case manager. Later that day the CM called us and was more than helpful to plug us into resources out here. The RN also suggested that we got the PCH ER (again) this time complaining of increase in seizures. Matthew has had more seizures since we stopped the ACTH. She said this would help us get into PCH's neuro clinic faster.
So Friday we went back to the ER. It's about a 40 minute drive without rush hour traffic. They did some blood work and when they discharged us, they told us to contact neuro...they were referring us. I tried calling Friday, but was unable to get through.
I called back today (Monday). I was told the next appointment was mid June. I explained that we were just in ER and Matthew had already had 5 seizures this AM. (which was true). She said she could get us in the end of May. Although that's 2 weeks away, I wasn't happy. I called Matt's CM and she got us in this Wednesday.
We have arrived in AZ and things are going well so far, except for our colds again. Matt was running a fever of 103.5 consistently for a few days. He was throwing up his seizure meds and Tylenol. I took him to Phoenix Children's Hospital (PCH) at midnight last Wednesday, well, actually Thursday. They were very nice there, but just said it was a virus and sent us on our way. I figured it was, but with his seizures medication, I'm always careful.
Thursday during the day, we got word that our insurance had been transferred. I contacted the pediatrician's office to start the referral process. The RN was very nice. She gathered a lot of history and referred us to a case manager. Later that day the CM called us and was more than helpful to plug us into resources out here. The RN also suggested that we got the PCH ER (again) this time complaining of increase in seizures. Matthew has had more seizures since we stopped the ACTH. She said this would help us get into PCH's neuro clinic faster.
So Friday we went back to the ER. It's about a 40 minute drive without rush hour traffic. They did some blood work and when they discharged us, they told us to contact neuro...they were referring us. I tried calling Friday, but was unable to get through.
I called back today (Monday). I was told the next appointment was mid June. I explained that we were just in ER and Matthew had already had 5 seizures this AM. (which was true). She said she could get us in the end of May. Although that's 2 weeks away, I wasn't happy. I called Matt's CM and she got us in this Wednesday.
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