With this medication (ACTH) we can have several side effects. One of the effects can be sleep pattern changes. He is up until about 1 AM and sometime later. He's up at 6, maybe 7 if I'm lucky. He sometimes takes naps, but we usually have busy schedules....this has been this weeks:
*Monday~ drive 60 miles each way to get his helmet adjusted
*Tuesday~ physical therapy/dropping grammy Forni off at airport
*Wednesday~ I drove to four pharmacy's trying to get his medication & in home therapy
*Thursday~ physical therapy & lab draw at hospital
*Friday~ pediatrician appointment
Those are just Matthew related things...I worked in between that, unpacked, etc.
We went a week without a seizure. Yesterday we were instructed to decrease his Keppra (ONE of his anti-seizure med) from 2.0 mL to .5 mL. He has been having seizures since last night. It's really frustrating because I thought we were on the right track and then we have a set back like this. I am going back to his 2.0 mL and hopefully we'll be better. Oh and hopefully I'll get to go to sleep soon. But, to see Matthew improving, it's worth it.
Friday, October 24, 2008
Tuesday, October 21, 2008
General info on Infantile Spasms
What is it like?
Here's a typical story: "At first I thought Chris was just having the little body jerks when he was moved or startled, like my other children had when they were infants. But then I knew something was wrong. The jerks became more violent, and his tiny body was thrust forward and his arms flew apart. They only lasted a few seconds but started to occur in groups lasting a few minutes. It was so hard to see such a young baby having these things."
Infantile spasms (also called West syndrome because it was first described by Dr. William James West, in the 1840s) consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures"). Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series.
Infantile spasms are most common just after waking up and rarely occur during sleep.
Who gets it?
Infantile spasms begin between 3 and 12 months of age and usually stop by the age of 2 to 4 years. They are uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and have been developing normally. There is no evidence that family history, the baby's sex, or factors such as immunizations are related to infantile spasms.
Tell me more
When a baby with infantile spasms has an EEG, the doctor usually will see an unusual pattern called hypsarrhythmia (HIP-sa-RITH-me-ah) when the seizures are not occurring. This chaotic, high-voltage pattern is often helpful in confirming the diagnosis.
Babies with infantile spasms seem to stop developing and may lose skills that they had already mastered, such as sitting, rolling over, or babbling.
How is it treated?
Steroid therapy (adrenocorticotropic hormone [ACTH] or prednisone) is the primary treatment for infantile spasms. Some experts recommend trying a seizure medicine such as Sabril (vigabatrin, not available in the United States), Depakote (valproate), or Topamax (topiramate) before steroid therapy. In countries where it is available, Sabril is often used as the initial therapy because it is relatively safe (especially for short-term use) and effective. It is especially effective for children with tuberous sclerosis (a disorder associated with abnormalities involving the brain, skin, heart, and other parts of the body). Sabril is associated with damage to the retina of the eye and should be used with caution in children.
What's the outlook?
Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be.
When the spasms stop, many children later develop other kinds of epilepsy. About one-fifth of children who have had infantile spasms will have the Lennox-Gastaut syndrome.
Here's a typical story: "At first I thought Chris was just having the little body jerks when he was moved or startled, like my other children had when they were infants. But then I knew something was wrong. The jerks became more violent, and his tiny body was thrust forward and his arms flew apart. They only lasted a few seconds but started to occur in groups lasting a few minutes. It was so hard to see such a young baby having these things."
Infantile spasms (also called West syndrome because it was first described by Dr. William James West, in the 1840s) consist of a sudden jerk followed by stiffening. Often the arms are flung out as the knees are pulled up and the body bends forward ("jackknife seizures"). Less often, the head can be thrown back as the body and legs stiffen in a straight-out position, or movements can be more subtle and limited to the neck or other body parts. Each seizure lasts only a second or two but they usually occur close together in a series. Sometimes the spasms are mistaken for colic, but the cramps of colic do not occur in a series.
Infantile spasms are most common just after waking up and rarely occur during sleep.
Who gets it?
Infantile spasms begin between 3 and 12 months of age and usually stop by the age of 2 to 4 years. They are uncommon, affecting only one baby out of a few thousand. About 60% of the affected infants have some brain disorder or brain injury before the seizures begin, but the others have had no apparent injury and have been developing normally. There is no evidence that family history, the baby's sex, or factors such as immunizations are related to infantile spasms.
Tell me more
When a baby with infantile spasms has an EEG, the doctor usually will see an unusual pattern called hypsarrhythmia (HIP-sa-RITH-me-ah) when the seizures are not occurring. This chaotic, high-voltage pattern is often helpful in confirming the diagnosis.
Babies with infantile spasms seem to stop developing and may lose skills that they had already mastered, such as sitting, rolling over, or babbling.
How is it treated?
Steroid therapy (adrenocorticotropic hormone [ACTH] or prednisone) is the primary treatment for infantile spasms. Some experts recommend trying a seizure medicine such as Sabril (vigabatrin, not available in the United States), Depakote (valproate), or Topamax (topiramate) before steroid therapy. In countries where it is available, Sabril is often used as the initial therapy because it is relatively safe (especially for short-term use) and effective. It is especially effective for children with tuberous sclerosis (a disorder associated with abnormalities involving the brain, skin, heart, and other parts of the body). Sabril is associated with damage to the retina of the eye and should be used with caution in children.
What's the outlook?
Most children with infantile spasms are mentally retarded later in life. Those whose spasms are related to an underlying developmental brain disorder or injury have a higher likelihood of moderate to severe retardation. The outlook is brighter for those who were developing normally before the spasms started: 10 to 20% will have normal mental function and some others may be only mildly impaired. Some children with infantile spasms develop autism. Many doctors believe that the quicker the seizures are controlled, the better the results will be.
When the spasms stop, many children later develop other kinds of epilepsy. About one-fifth of children who have had infantile spasms will have the Lennox-Gastaut syndrome.
Home Sweet Home
We survived our 20 hour back to Florida. There were only a few minor mishaps....oh, driving with the gas cap off-dangling from car. Oh, and there was the incident where I put Matthew's bananas on the roof of the car and we drove off. I have a nice banana blob on my rear window now.
We have not seen any seizures in almost a week now. We are coming upon new obstacles. From what I had heard, he would be "normal" in a few days. "Normal" is a subjective term. He is cooing A LOT! He is also awake A LOT. I have been up until 230 AM almost every night and then he's up at 6. They say the meds can do this. He's fussy, but he also popped a SECOND tooth in 5 days. We don't know if the tooth is what's causing the fussy or if the medication.
It's amazing having our little guy back, but we're also readjusting. He is left dominate, he does not use his right arm much. We are working on this in physical therapy. He has figured out how to put the back of his hand in his mouth. (left hand). For most 9 mo old, this is old habit, but it's new for him.
We have not seen any seizures in almost a week now. We are coming upon new obstacles. From what I had heard, he would be "normal" in a few days. "Normal" is a subjective term. He is cooing A LOT! He is also awake A LOT. I have been up until 230 AM almost every night and then he's up at 6. They say the meds can do this. He's fussy, but he also popped a SECOND tooth in 5 days. We don't know if the tooth is what's causing the fussy or if the medication.
It's amazing having our little guy back, but we're also readjusting. He is left dominate, he does not use his right arm much. We are working on this in physical therapy. He has figured out how to put the back of his hand in his mouth. (left hand). For most 9 mo old, this is old habit, but it's new for him.
Thursday, October 16, 2008
Being your child's advocate
The post below explains his catheter situation, but I learned something from it. My mother-in-law noticed that he was uncomfortable with his leg a certain way. We assumed it was due to the catheter and/or tape from it. Not thinking anything of it, we left it. A few hours later we realized how infected and sore it was.
Later that night, Matthew was still awake. It was past midnight..in the 1 o'clock hour. He hadn't slept much. But, who would with their catheter screwed up, right? At this point, his cath was out, but I'm sure he was still uncomfortable. Well, he had a seizure. I buzzed the RN and we were with him during the seizure. It was a "medium" seizure for Matthew. He had more severe ones earlier that day and the RN received an order for Adivan for that 1 seizure. Knowing this, the night RN talked to the doctor on the floor and got an order for Diazapam (AKA Valium). She kept saying, "this will help stop the seizure and help him sleep". I told her once he fell asleep, he'd be fine and he was probably going to fall asleep soon. She still brought the med in and started hooking him up to monitors. I started to get a feeling we shouldn't take this med. She put the monitor on that measures his heart and respiration.
It had been about a half hour by now, she was almost ready to give him the med. He was sound asleep and not seizing anymore. I said something like, "I don't think he needs that, can we hold off". I felt guilty because she spent a half hour setting up, getting the medication and even had to have another RN come in to help with the monitor. She said we could hang onto it that way if he has another seizure we would have it near by. Oh, and while she was talking about the med, she kept saying, "This will help him sleep". That didn't sit right. If we want something to help him sleep, I'd prefer a more gentle medication....like Benadryl.
Matthew slept the WHOLE night. In fact, he pretty much slept for 24 hours straight. He'd wake up occasionally, but fall back to sleep within an hour. His new ACTH med was/is kicking his butt. Obviously he didn't need an intense medication to help him sleep.
Go with your gut. Who cares if you upset someone.
Later that night, Matthew was still awake. It was past midnight..in the 1 o'clock hour. He hadn't slept much. But, who would with their catheter screwed up, right? At this point, his cath was out, but I'm sure he was still uncomfortable. Well, he had a seizure. I buzzed the RN and we were with him during the seizure. It was a "medium" seizure for Matthew. He had more severe ones earlier that day and the RN received an order for Adivan for that 1 seizure. Knowing this, the night RN talked to the doctor on the floor and got an order for Diazapam (AKA Valium). She kept saying, "this will help stop the seizure and help him sleep". I told her once he fell asleep, he'd be fine and he was probably going to fall asleep soon. She still brought the med in and started hooking him up to monitors. I started to get a feeling we shouldn't take this med. She put the monitor on that measures his heart and respiration.
It had been about a half hour by now, she was almost ready to give him the med. He was sound asleep and not seizing anymore. I said something like, "I don't think he needs that, can we hold off". I felt guilty because she spent a half hour setting up, getting the medication and even had to have another RN come in to help with the monitor. She said we could hang onto it that way if he has another seizure we would have it near by. Oh, and while she was talking about the med, she kept saying, "This will help him sleep". That didn't sit right. If we want something to help him sleep, I'd prefer a more gentle medication....like Benadryl.
Matthew slept the WHOLE night. In fact, he pretty much slept for 24 hours straight. He'd wake up occasionally, but fall back to sleep within an hour. His new ACTH med was/is kicking his butt. Obviously he didn't need an intense medication to help him sleep.
Go with your gut. Who cares if you upset someone.
Where to start??!!
I'm thankful that tonight is the last night in the hospital, however, I just found out that there are a few laptops on this floor for patient's to borrow. I guess I could've played online the past few days, but that's OK. I got to catch up on Dr.Phil and other fine, high quality shows :)
I guess I'll start at the beginning. Monday we went to see Dr. Coker (The Ped Neuro out here). He did a hands-on exam, something our Ped Neuro in Pensacola did not do. He gathered a detailed history. And then Matthew had a seizure in his office. Obviously I would never wish a seizure on my baby, but I was actually glad that he could witness this occurrence. He finished the exam and we talked medications. He asked if the Ped Neuro in P'cola discussed the medication ACTH. I said, "no". Dr. Coker went on to describe it. He mentioned it was very expensive--ah...I do remember our P'cola Ped. Neuro mentioning this medication. However, he did not go into details. Kind of like, "oh there is another treatment...but it costs A LOT of money". Well, Dr. Coker discussed the med, including side effects. They weren't as scary as I thought--let's see...weight gain, round (moon) face, mood/fussy change, sleep pattern change and glucose in the urine. I was thinking side effects like...kidney complications,etc. Those are serious, but not as scary. Dr. Coker said, "I'd like to admit him and run tests". I said, "let's do it". And here we are.
We had a 24 hour EEG. Matthew was also filmed during it, I think that is amazing! Then when the doc reviews that EEG, he can see spikes and see what Matt was doing. We did a 24 hour urine collection, IV, CT Scan and blood labs. The urine was through a catheter, which had complications. We were a few hours away from removal and we discovered the catheter was causing him to bleed, puss and a slight blister. It looked SO painful. It certainly explains the fussiness. When the Dr on the floor saw it, he kept flinching and gasping. It kinda looked a little like a meat ball. Not the shape it's supposed to be. The swelling has gone down, he is peeing OK, so we don't think there is internal damage, but there is a slit because the cath was pulled during the seizures. We'll have to see if he needs a stitch or something. Poor baby.
We started the ACTH treatment. The doctor said that we would see a difference in a few days. He wanted to keep us in the hospital to monitor the effects of the medication and he wanted to make sure that when we were discharged, we were having no seizures. We have almost gone 48 hours without a seizure! That's the longest we've gone since his first one!
I'm having a hard time with the injections. Everyone has said, "oh, you were born to give injections" referring to the fact I've been diabetic for almost 20 years. Let me just say, when it's your child, it's the hardest thing. I had a hard time watching him get his normal immunizations. Now I'm the one poking him with a huge needle. My diabetic injections are a small, short needles. His is a larger, thicker needle that goes much deeper. But, it is what it is. It's my baby, if it make him better, I have to do it.
I haven't been sleeping much. I haven't showered everyday. I've been with Matthew almost the entire time while he's in the hospital. I went back home once to shower and say hi to Morgan. Other than that, I've been by his side. I even started ordering my meals to come to my room (rather than going to the cafeteria) so I wouldn't leave him. It's funny because I thought I was tired and exhausted before, but this is even more intense. I think once we're home, Matthew will understand his surroundings and maybe perk up. He's also having diarrhea because of the antibiotics and has horrible diaper rash. He screams when I clean him up.
The plan is now to leave IL this weekend and drive back home to FL. My mother-in-law has volunteered to drive back with me. Chris is very busy and stressed out in FL (Did I mention our house was stuck by lightening and fried a some of our electronics/phone/internet/direct TV).
My goal was to be home by my 30th birthday (Monday, Oct 20) and it looks like we will!
I guess I'll start at the beginning. Monday we went to see Dr. Coker (The Ped Neuro out here). He did a hands-on exam, something our Ped Neuro in Pensacola did not do. He gathered a detailed history. And then Matthew had a seizure in his office. Obviously I would never wish a seizure on my baby, but I was actually glad that he could witness this occurrence. He finished the exam and we talked medications. He asked if the Ped Neuro in P'cola discussed the medication ACTH. I said, "no". Dr. Coker went on to describe it. He mentioned it was very expensive--ah...I do remember our P'cola Ped. Neuro mentioning this medication. However, he did not go into details. Kind of like, "oh there is another treatment...but it costs A LOT of money". Well, Dr. Coker discussed the med, including side effects. They weren't as scary as I thought--let's see...weight gain, round (moon) face, mood/fussy change, sleep pattern change and glucose in the urine. I was thinking side effects like...kidney complications,etc. Those are serious, but not as scary. Dr. Coker said, "I'd like to admit him and run tests". I said, "let's do it". And here we are.
We had a 24 hour EEG. Matthew was also filmed during it, I think that is amazing! Then when the doc reviews that EEG, he can see spikes and see what Matt was doing. We did a 24 hour urine collection, IV, CT Scan and blood labs. The urine was through a catheter, which had complications. We were a few hours away from removal and we discovered the catheter was causing him to bleed, puss and a slight blister. It looked SO painful. It certainly explains the fussiness. When the Dr on the floor saw it, he kept flinching and gasping. It kinda looked a little like a meat ball. Not the shape it's supposed to be. The swelling has gone down, he is peeing OK, so we don't think there is internal damage, but there is a slit because the cath was pulled during the seizures. We'll have to see if he needs a stitch or something. Poor baby.
We started the ACTH treatment. The doctor said that we would see a difference in a few days. He wanted to keep us in the hospital to monitor the effects of the medication and he wanted to make sure that when we were discharged, we were having no seizures. We have almost gone 48 hours without a seizure! That's the longest we've gone since his first one!
I'm having a hard time with the injections. Everyone has said, "oh, you were born to give injections" referring to the fact I've been diabetic for almost 20 years. Let me just say, when it's your child, it's the hardest thing. I had a hard time watching him get his normal immunizations. Now I'm the one poking him with a huge needle. My diabetic injections are a small, short needles. His is a larger, thicker needle that goes much deeper. But, it is what it is. It's my baby, if it make him better, I have to do it.
I haven't been sleeping much. I haven't showered everyday. I've been with Matthew almost the entire time while he's in the hospital. I went back home once to shower and say hi to Morgan. Other than that, I've been by his side. I even started ordering my meals to come to my room (rather than going to the cafeteria) so I wouldn't leave him. It's funny because I thought I was tired and exhausted before, but this is even more intense. I think once we're home, Matthew will understand his surroundings and maybe perk up. He's also having diarrhea because of the antibiotics and has horrible diaper rash. He screams when I clean him up.
The plan is now to leave IL this weekend and drive back home to FL. My mother-in-law has volunteered to drive back with me. Chris is very busy and stressed out in FL (Did I mention our house was stuck by lightening and fried a some of our electronics/phone/internet/direct TV).
My goal was to be home by my 30th birthday (Monday, Oct 20) and it looks like we will!
Tuesday, October 14, 2008
Children's Hospital
I'm waiting for the RN to come in to have me give Matthew an injection--so I will be brief. We are admitted to Children's Hospital out here in IL. We have a diagnosis of Infantile Spasms, which is different that what we have been treating for--Epilepsy. We will be inpatient for a couple of days, the doctor is optimistic we will see results within a few days. He feels we will see Matthew have an uplifted personality. He feels that seizures will stop with this medication. The medication is called ACTH. I will write more in detail in the future. I will say, however, it is projected to cost about $200,000 for the course of the treatment. That is medication only, not hospital stay, not tests, etc. The medication is $25,000 per vial of medication. It is an intramuscular injection which I will have to give him. Matt's being a little trooper and we're hoping to see the difference in a few days.
Saturday, October 11, 2008
Appointment with Dr. Coker
Friday I was talking to my dad when the house phone rang. It was the RN from Dr. Coker's office (Ped Neuro). She said they had an opening at 1030 AM Monday. Obviously I took the appointment. I canceled my December 11th appointment (which I had no intention of waiting for...I knew we'd get in soon, but Monday is sooner than I thought).
Chris leaves for Pensacola on Monday before Matthew's appointment, but his mom will go with Matthew and me. We still haven't straightened out insurance, we followed up on the referral status last Thursday. Dr. Banas (PCP) left several portions of the referral blank. She started to fill it out last Tuesday, so really it should have been accepted by now by the insurance. If she had called us to tell us she had questions, we would've assisted. The funny thing is, when we faxed the form that needed to be filled out for Tricare, we also faxed her a cheat-sheet that had all the addresses and names she needed to fill in.
Chris called Tricare and Dr. Banas's office Friday. She correctly filled it out and faxed it back to Tricare. It was not in Tricare's system at 600 PM but that's doesn't mean they hadn't received it. Either way, this is not stopping us from attending the appointment on Monday.
Chris leaves for Pensacola on Monday before Matthew's appointment, but his mom will go with Matthew and me. We still haven't straightened out insurance, we followed up on the referral status last Thursday. Dr. Banas (PCP) left several portions of the referral blank. She started to fill it out last Tuesday, so really it should have been accepted by now by the insurance. If she had called us to tell us she had questions, we would've assisted. The funny thing is, when we faxed the form that needed to be filled out for Tricare, we also faxed her a cheat-sheet that had all the addresses and names she needed to fill in.
Chris called Tricare and Dr. Banas's office Friday. She correctly filled it out and faxed it back to Tricare. It was not in Tricare's system at 600 PM but that's doesn't mean they hadn't received it. Either way, this is not stopping us from attending the appointment on Monday.
Thursday, October 9, 2008
One step closer
I called the Ped Neuro that we would like to take Matthew to yesterday. I had his RN's direct line. She explained that there is a 2 mo wait for an appointment~BUT there is a stand-by list. I of course, was extra perky & sweet as sugar to her because she controls the list. She said that she goes down the list when there is a cancellation. She explained that she won't leave a message, so if person #1 doesn't answer the phone she calls person #2. I told her we're pretty much up here waiting around for appointment. She seemed optimistic that we would be in within a week or so.
Matthew's seizures have not really improving. He has been having seizures everyday still, but EVERY night he's have one between 10PM-12AM. It's frustrating bc he might be sleeping and he wakes up having them. Last night I had him in bed and he had his 11PM seizure and he threw up EVERYWHERE. It's frustrating and tough. We wish we could take these crappy seizures away.
Monday, October 6, 2008
BRRRRRR
No change in status yet for Matthew up here! We're having a nice time visiting family & friends. I'm getting to sleep in every other day (Chris and I are rotating). Unfortunately, I have a cold. But, when you change from 89 degree weather to 60 degree weather, it happens. Matthew is getting lots of cuddles, snuggles and love from friends and family.
We faxed the referral form that insurance gave us to Matthew's PCP today. It needs to be filled out by the PCP and then sent back to insurance. We'll call tomorrow to see if the PCP has completed this. Chris has bought his plane ticket back to Pensacola Oct 14. It would be nice if we were done by then, but I am not sure we will be. He'll then drive back up here after the appointments and we'll drive that fun, fun, fun drive back to P'Cola.
We faxed the referral form that insurance gave us to Matthew's PCP today. It needs to be filled out by the PCP and then sent back to insurance. We'll call tomorrow to see if the PCP has completed this. Chris has bought his plane ticket back to Pensacola Oct 14. It would be nice if we were done by then, but I am not sure we will be. He'll then drive back up here after the appointments and we'll drive that fun, fun, fun drive back to P'Cola.
Friday, October 3, 2008
Moving Forward...and then back
We went and saw a new PCP today. She was very nice and was willing to work with us on a referral. She said that she writes her referrals on a prescription and then we take it to the specialist we want. This, of course, is VERY different when we get a referral from our military doc. We called up Tricare to see if this would be acceptable. Nope. The good news is, before we left his appointment, she said if they have another form to fill out, just fax it to her. So looks like Monday we'll be doing some extra work.
Wednesday, October 1, 2008
Rescheduled Appointment....
We didn't make our appointment yesterday. When Chris called to check on the status of insurance, they hadn't processed it yet. (although we faxed it). Although they said they would back date it to the day it was received, we decided to wait until Friday to see the Pediatrician ~ We don't want something to screw it up and it mess up our referral down the line.
Matthew has been doing well. He has been more interactive. But, last night he was up until midnight (I was up with him, lucky me) and then he had a seizure around 1230AM. He usually doesn't have night seizures, but the last two nights he has.
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