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.
Thursday, May 28, 2009
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.
Monday, April 6, 2009
Smiles & Small Pox
Chris received his small pox vaccine (among others) recently. However, with S.Pox, it is an open sore, this means that it is potentially contagious. It is recommended that Chris avoid Matt & me to decrease his chances of exposing us. They told him to leave it covered at work to reduce spreading but to keep it uncovered as much as possible at home to help it dry out and close up. It takes four weeks for him to be safe around people. He leaves in less than two. I have been changing diapers, baths, etc. If Matt didn't have such unique needs, it wouldn't be as challenging. but it is what it is and we have been busy.
The silver lining is Matthew has been in better moods. We increased his Tegatrol again and it seems to be helping over. Yes, we still see seizures, but they are decreasing from two weeks ago.
Tuesday, March 31, 2009
Genetics
After about a two month wait, we finally got to go to the Genetic doctor. I had no idea what to expect. The facility is located on University of South Alabama. I have never drove in Mobile, so I was nervous for that. Our appointment was at930 AM, so I figured we'd hit rush hour (rush hour in Mobile is a piece of cake compared to rush hour in Chicago & Phoenix). I woke Matthew up at 700 AM. I was hoping he'd sleep in the car...nope...but he was in a great mood. He was giggling in the back seat.
The RN took us to a room and gathered Matthew's history. She weighed and measured him...30 lbs, 36 inches. The Dr came in and did a physical exam, gathered a bit more history and discussed our next steps. They need a DNA sample (blood) from Matthew. He said that we may have results within 3 weeks. He said that might not tell us if it is genetic, though. It MAY just show a mutation in his gene that caused the Infantile Spasms. If they are unable to determine if it is genetic, they will need to test Chris and me.
They wanted us to follow up in 3 months, but we will be living in Arizona while Chris is deployed. We will communicate by phone and follow up in 4 months.
We had to drive to a hospital (Univ S. AL Women's & Children's Hospital) for a blood draw. Matt's never had a blood draw from the veins in the arm. Before when he needed blood, they were able to prick his foot and get a sample that way. We had to register at the hospital in admission..which I thought was strange for a lab draw. I didn't understand why we couldn't just give them my insurance card, but they now know my work address, Chris's work address, etc. Anyway, we go to the lab and two ladies get Matt ready for lab draw. I couldn't see what was going on because they were standing next to him lying on the bed. I didn't want to see him get the labs. I hear Matt start to giggle. I hear the ladies say, "look at his smile". He's flirting with the ladies. He didn't even cringe with the lab stick...they had 6 tubes to draw, too. He did great. He did better than me.
The RN took us to a room and gathered Matthew's history. She weighed and measured him...30 lbs, 36 inches. The Dr came in and did a physical exam, gathered a bit more history and discussed our next steps. They need a DNA sample (blood) from Matthew. He said that we may have results within 3 weeks. He said that might not tell us if it is genetic, though. It MAY just show a mutation in his gene that caused the Infantile Spasms. If they are unable to determine if it is genetic, they will need to test Chris and me.
They wanted us to follow up in 3 months, but we will be living in Arizona while Chris is deployed. We will communicate by phone and follow up in 4 months.
We had to drive to a hospital (Univ S. AL Women's & Children's Hospital) for a blood draw. Matt's never had a blood draw from the veins in the arm. Before when he needed blood, they were able to prick his foot and get a sample that way. We had to register at the hospital in admission..which I thought was strange for a lab draw. I didn't understand why we couldn't just give them my insurance card, but they now know my work address, Chris's work address, etc. Anyway, we go to the lab and two ladies get Matt ready for lab draw. I couldn't see what was going on because they were standing next to him lying on the bed. I didn't want to see him get the labs. I hear Matt start to giggle. I hear the ladies say, "look at his smile". He's flirting with the ladies. He didn't even cringe with the lab stick...they had 6 tubes to draw, too. He did great. He did better than me.
Friday, March 13, 2009
EEG & Kirghizistan
Yesterday we had another EEG. Our last 2 EEGs (10 days ago& a month) showed hypsarrhythmic which is a symptom of Infantile Spasms. We started the ACTH a month ago to treat this irregularity. His EEG yesterday showed that he no longer has hypsarrhythic EEG. The ACTH worked. Now the question is, when we discontinue the ACTH (it will take a month to wean him off) if his EEG will change.
His EEG still showed that seizures are present. We increased his Tegatrol and we are planning on still going to Children's Miami because as the doctor put it, "Matt's a tough case". We have no idea if we'll do surgery or if they'll just give us a second...well, third opinion.
April 20 Chris is being deployed for 120 days to Kirghizistan. Depending on where we are for Matthew's treatment w/ Miami, Matt and I will plan on going to Arizona (and stay in our house that never sold). Chris's brother is planning on moving to Arizona, this was announced last week. Now that Chris is leaving, all the more reason to go. I will have friends, family, support, an actual Air Force Base (not Navy like here) and access to Children's Hospital Phoenix. Our friend is renting our house and will be able to help me as well.
His EEG still showed that seizures are present. We increased his Tegatrol and we are planning on still going to Children's Miami because as the doctor put it, "Matt's a tough case". We have no idea if we'll do surgery or if they'll just give us a second...well, third opinion.
April 20 Chris is being deployed for 120 days to Kirghizistan. Depending on where we are for Matthew's treatment w/ Miami, Matt and I will plan on going to Arizona (and stay in our house that never sold). Chris's brother is planning on moving to Arizona, this was announced last week. Now that Chris is leaving, all the more reason to go. I will have friends, family, support, an actual Air Force Base (not Navy like here) and access to Children's Hospital Phoenix. Our friend is renting our house and will be able to help me as well.
Friday, March 6, 2009
March 2009
We have been on the two injection for a week now. Although I have seen some improvements, we still see some seizures. He is pretty moody, which is a big side effect. He is sleeping pretty well at night, it takes him until about 11 PM to fall asleep, but he is sleeping though the night mostly.
He has had an increase in appetite and elevated blood pressure. I take him to the Naval Hospital to his pediatrician's office to have his BP checked. Last Tuesday it was 134/75. The RN told me normal BP for a little guy is 100/60. I went the next day and his BP was normal. We'll continue to keep an eye on it and continue to get it checked.
Matthew's moods pretty much consist of whining. If I hold him, he does better. However, it's really hard to hold and cuddle a 30 pound little guy all day long. But, we do what we can.
We have our next EEG next week and we'll try to figure out the next step in our game plan while we wait for Children's Miami to contact us regarding the referral.
Matthew continues to work on his development. He can hold his head up for short times when we help him sit up. This is a HUGE step forward for us.
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