My poor boy. On Monday we more than doubled Micah's dose of ACTH, which means he has to have two shots per day instead of only one. Sandy continues to do the morning one, and I am doing the one in the evening. The front of his thighs are full of small bruises and tiny pinprick marks. Last night when I gave him the injection, he was distraught for probably close to a half hour afterwards. It was so hard to have him want to be held and comforted, but not want to be touched by us (David had to hold him down for the shot and I was the one who actually poked him).
But, fortunately, the injections seem to be having a positive effect on Micah's seizures. We have seen a fairly significant reduction over the past few days. We don't know if it will last or if it is just a blip, but we are feeling good about this. It makes the distress of the shots feel worth it.
He is definitely cranky at some points, lethargic at others, and needs to just pace the floor sometimes. He is still sleeping through the night. That that would change was our biggest worry--none of us do well on little sleep.
So we are doing alright. We will check in with the doctor on Monday to give a weekend report. We don't know if we might see further improvement. It would be great if that was the case. If not, we'll try something else.
Friday, October 28, 2011
Sunday, October 23, 2011
More ups and downs
We are settling into a bit of a rhythm here at home. Injection is first thing in the morning. Micah still greets Sandy with a smile and only starts to get upset when the alcohol prep begins. He's a pretty forgiving kid!
We have spent some time outside, since that's fine for Micah. He just needs to avoid places where there are many people (and germs), like church, grocery stores, daycare, etc. While the first day home was pretty nasty weather-wise, we have had a string of nice days in a row. We are trying to enjoy them while they last! Our new maple tree that was planted late last fall is turning a bright red--just what we had hoped!
Micah continues to have some mild side effects from the ACTH--mostly some irritability and occasional trouble going to sleep. But he's still sleeping through the night, so it's hard to complain! His blood pressure and other warning signs are fine. But the past two days have been discouraging. Thursday and Friday we really thought that there were significantly fewer seizures, like half as many as we have seen recently. But then yesterday was not a very good day. We saw 25-30 again. Then he had too many this morning, first thing. But now he has gone for several hours without any that we have seen, so we hope this will continue. This is a frustrating disorder! And disorder is the right word. It's not predictable. It is not rational. And it doesn't follow any kind of pattern.
We will check in with our doctor again tomorrow. It is likely that we will increase Micah's dosage from 40 to 80 units per day. We hope he will still tolerate that well, and that it might do something more to relieve the seizures.
Last night David and I were able to get some time away together, thanks to my parents, to celebrate our birthdays. We did a round of disc golf at Oxbow Park and then had dinner. A nice, relaxing, not-too-late evening.
We have spent some time outside, since that's fine for Micah. He just needs to avoid places where there are many people (and germs), like church, grocery stores, daycare, etc. While the first day home was pretty nasty weather-wise, we have had a string of nice days in a row. We are trying to enjoy them while they last! Our new maple tree that was planted late last fall is turning a bright red--just what we had hoped!
Micah continues to have some mild side effects from the ACTH--mostly some irritability and occasional trouble going to sleep. But he's still sleeping through the night, so it's hard to complain! His blood pressure and other warning signs are fine. But the past two days have been discouraging. Thursday and Friday we really thought that there were significantly fewer seizures, like half as many as we have seen recently. But then yesterday was not a very good day. We saw 25-30 again. Then he had too many this morning, first thing. But now he has gone for several hours without any that we have seen, so we hope this will continue. This is a frustrating disorder! And disorder is the right word. It's not predictable. It is not rational. And it doesn't follow any kind of pattern.
We will check in with our doctor again tomorrow. It is likely that we will increase Micah's dosage from 40 to 80 units per day. We hope he will still tolerate that well, and that it might do something more to relieve the seizures.
Last night David and I were able to get some time away together, thanks to my parents, to celebrate our birthdays. We did a round of disc golf at Oxbow Park and then had dinner. A nice, relaxing, not-too-late evening.
Thursday, October 20, 2011
Home again, home again
We arrived home about 10:30 last night. My parents had driven over to deliver the medicine for Micah's injections, and were here to greet us. Also waiting for us was a sparkling clean house, thanks to the Preacher Mamas. We were so glad to arrive safely--it was a dark and stormy night! Lake Michigan waves along Lakeshore Drive in Chicago were quite something. I don't know how big they were because it was hard to see at night, but the spray was going probably 30 feet in the air where they were hitting the seawalls.
It felt so good to sleep in our own beds last night. We all slept hard until about 6:30, when we got up to greet Sandy, who so very kindly came on her way to work to take Micah's blood pressure and give him his injection. I don't know what we would have done this morning without her! There was a bit of a snafu regarding the needles, but she was able to calmly figure it out, thanks to her expertise. It also didn't take her nearly as long to do the injection, or maybe it just seemed to take forever when I was actually the one who did it.
After Sandy left, we all went back to bed for a few hours. Micah asked to go outside a few times, but that was a no-go because of the rain, wind and cold. We'll see how cabin-feverish we get in the next few weeks. Micah had a pretty good day, but we are finally beginning to see some of the grumpy side effects of the ACTH. It was clearly not much fun to be Micah at times this evening. It wasn't all that much fun to be his parents, either, for a while, but we feel sorry enough for him that we don't begrudge him his bad mood. We know it is not his fault; we just have to be patient over the next few weeks. And really, very tolerable, since it isn't all the time--yet.
We are grateful that Micah is tolerating the steroid fairly well. We are grateful for friends and family who are willing to share their time and skills to help make our journey easier. We are, most of all, grateful to be home. We are so thankful to have a world-class facility within a few hours' drive, and we are always equally glad to see it in the rear view mirror as we head out of the city.
It felt so good to sleep in our own beds last night. We all slept hard until about 6:30, when we got up to greet Sandy, who so very kindly came on her way to work to take Micah's blood pressure and give him his injection. I don't know what we would have done this morning without her! There was a bit of a snafu regarding the needles, but she was able to calmly figure it out, thanks to her expertise. It also didn't take her nearly as long to do the injection, or maybe it just seemed to take forever when I was actually the one who did it.
After Sandy left, we all went back to bed for a few hours. Micah asked to go outside a few times, but that was a no-go because of the rain, wind and cold. We'll see how cabin-feverish we get in the next few weeks. Micah had a pretty good day, but we are finally beginning to see some of the grumpy side effects of the ACTH. It was clearly not much fun to be Micah at times this evening. It wasn't all that much fun to be his parents, either, for a while, but we feel sorry enough for him that we don't begrudge him his bad mood. We know it is not his fault; we just have to be patient over the next few weeks. And really, very tolerable, since it isn't all the time--yet.
We are grateful that Micah is tolerating the steroid fairly well. We are grateful for friends and family who are willing to share their time and skills to help make our journey easier. We are, most of all, grateful to be home. We are so thankful to have a world-class facility within a few hours' drive, and we are always equally glad to see it in the rear view mirror as we head out of the city.
Wednesday, October 19, 2011
We're headed home!
Because things are going so well, we get to go home today! We are thrilled at the thought of being able to sleep in our own beds tonight.
There is still no change in his seizures, but, again, that is not unexpected. We are glad that his side effects have been minimal so far. He was a bit grumpy this afternoon, but that could be related to the fact that he didn't have a nap and slept 3 hours less than usual last night.
We are waiting for our discharge papers and a few other things to take home: a script for Zantac (to avoid heartburn), a blood pressure cuff, some supplies to check his urine and BMs for various things that shouldn't be there--lucky us!
We're really headed out now, so more later.
There is still no change in his seizures, but, again, that is not unexpected. We are glad that his side effects have been minimal so far. He was a bit grumpy this afternoon, but that could be related to the fact that he didn't have a nap and slept 3 hours less than usual last night.
We are waiting for our discharge papers and a few other things to take home: a script for Zantac (to avoid heartburn), a blood pressure cuff, some supplies to check his urine and BMs for various things that shouldn't be there--lucky us!
We're really headed out now, so more later.
Tuesday, October 18, 2011
First Injection/Report from Tuesday
Well, we all made it through the first night! David and Micah's night was shorter than mine, but they did get some sleep. They were awakened this morning by a doctor. Then came another, and another, and the two lab techs, and then the nurse, and then more doctors, and then...you get the idea. I arrived back at the room around 7 this morning, just after the first doctor arrived to check on Micah. We saw our attending doctor, Dr. Nangia, and her team a bit after 9, and then shortly after that our nurse came in to give Micah his first steroid injection. Before she began she explained everything she would do, since we need to learn to do this in order to be discharged. And she handed us the sheet of 29 steps to a successful intramuscular injection. Yep, twenty-nine. Granted, it is broken down into baby steps, but still, it fills up two pages. Lots to remember for those of us who have never done this before. The nurse did this morning's injection, but I will do it tomorrow. We got our practice orange, vial of water and all the other stuff that we need to do this. And we practiced. Not quite sure how an orange will actually compare to how it feels physically to push a needle into Micah's thigh. Emotionally...well, an orange is not flesh of my flesh and doesn't have a tendency to cry when stuck. But we can do this!
As for side effects, nothing of note has happened yet. No grumpiness, no hyperactivity, no sleeplessness. And on the more serious side, no high blood pressure or other problems. His chest x-ray was clear except for a bit of residual something-or-other from the pneumonia earlie; nothing of any concern. Echocardiogram showed a strong, healthy heart of the correct size. Blood work was fine. No problems with the TB test. So we are trying to stay hopeful. No change in seizures yet (no increase either, which sometimes happens initially), but that is to be expected. It takes a few days and sometimes longer to see results.
We had visit from our brother-in-law, who was in town for a conference, to break up the monotony of an afternoon of no doctors coming by. Thanks, Padraic, for taking time to come and see Micah!
We are so blessed by the many ways people are supporting us. Sunnysiders have signed up to pray nearly around-the-clock for these two weeks; Preacher Mamas are antibacterializing our house as I write (if they could find it under all the clutter we left behind!); we have gotten numerous encouraging emails, cards, texts, messages--thank you so much! We are grateful for this time we get to spend with Micah--one of us is with him nearly all the time. We did get a break tonight when Volunteer Diana stayed and read Hooray for Fish to him while David and I went out for supper. They were reading it when we left, and still reading when we came back an hour later. We'll just have to trust her that they did take a break from it somewhere in there!
Good night, sleep tight. Here is a verse from the song we sing every night before bed:
Thank you for the night
A measure of your care
In darkness, as in light,
You, Lord, are there.
As for side effects, nothing of note has happened yet. No grumpiness, no hyperactivity, no sleeplessness. And on the more serious side, no high blood pressure or other problems. His chest x-ray was clear except for a bit of residual something-or-other from the pneumonia earlie; nothing of any concern. Echocardiogram showed a strong, healthy heart of the correct size. Blood work was fine. No problems with the TB test. So we are trying to stay hopeful. No change in seizures yet (no increase either, which sometimes happens initially), but that is to be expected. It takes a few days and sometimes longer to see results.
We had visit from our brother-in-law, who was in town for a conference, to break up the monotony of an afternoon of no doctors coming by. Thanks, Padraic, for taking time to come and see Micah!
We are so blessed by the many ways people are supporting us. Sunnysiders have signed up to pray nearly around-the-clock for these two weeks; Preacher Mamas are antibacterializing our house as I write (if they could find it under all the clutter we left behind!); we have gotten numerous encouraging emails, cards, texts, messages--thank you so much! We are grateful for this time we get to spend with Micah--one of us is with him nearly all the time. We did get a break tonight when Volunteer Diana stayed and read Hooray for Fish to him while David and I went out for supper. They were reading it when we left, and still reading when we came back an hour later. We'll just have to trust her that they did take a break from it somewhere in there!
Good night, sleep tight. Here is a verse from the song we sing every night before bed:
Thank you for the night
A measure of your care
In darkness, as in light,
You, Lord, are there.
Monday, October 17, 2011
Night One in a Shared Room
We arrived safely at Children's Memorial. I am checked in to the Ronald McDonald House a few blocks away. So far today Micah has had an echocardiogram, which took about an hour, a TB test, and is now hooked up for a video EEG--electrodes all over his head, wrapped in gauze with a colorful wire ponytail. We are waiting to go down for a chest x-ray, so his EEG paraphernalia is in a Buzz Lightyear backpack. We went for a little walk in the hall, and it is so heavy it almost tipped him over! We are grateful that this x-ray is happening shortly (about 8pm our time) rather than the middle of the night, as we had feared. Apparently there were lots of ER patients who needed x-rays, so we had to wait.
In the morning Micah will have a series of blood tests and then we expect to have his first injection. We'll see how that goes. He has been eating well today, though his meds were a bit tricky tonight.
It is always a bit of a shock to have our schedule and environment in the control of others.
A FEW HOURS LATER...
Chest x-ray complete. We hope his lungs are clear from the pneumonia of a week and a half ago. Now it's time to sleep, but it is bright and our roommate is watching TV. The volume is not overly loud, but Micah is used to a very quiet, dark room to sleep in. I will head back to RMH soon and David will stay here and (we hope) sleep. Thai noodle curry for supper hit the spot and now all we need is a good night's rest to prepare for what tomorrow may bring.
In the morning Micah will have a series of blood tests and then we expect to have his first injection. We'll see how that goes. He has been eating well today, though his meds were a bit tricky tonight.
It is always a bit of a shock to have our schedule and environment in the control of others.
A FEW HOURS LATER...
Chest x-ray complete. We hope his lungs are clear from the pneumonia of a week and a half ago. Now it's time to sleep, but it is bright and our roommate is watching TV. The volume is not overly loud, but Micah is used to a very quiet, dark room to sleep in. I will head back to RMH soon and David will stay here and (we hope) sleep. Thai noodle curry for supper hit the spot and now all we need is a good night's rest to prepare for what tomorrow may bring.
We're off!
We have a bed for Micah at Children's Memorial and a room for one of us at the Ronald McDonald House nearby. Looks like a lovely day to travel to Chicago!
Thursday, October 13, 2011
Take that (azithromycin), pneumonia!
Micah is healthy once more! He woke up on Sunday with a fever again, and we didn't know what to think. It had been 2 days since he had had a fever and Sunday was the last day of pneumonia antibiotics. We decided to do the "ignore it and see if it goes away" therapy, and this time it worked. He's been fine since Sunday. Except for some minor coughing just when he wakes up, he no longer has any symptoms.
As always happens when he gets really sick, Micah's seizures decreased. The reasons for this are a mystery, but it happens every time. But, unfortunately, after several days of seizure totals in the 10-15 range, yesterday morning he had 8 within one hour, and got above 10 in three hours. So the lull is over. I am grateful that while he's sick he has some reprieve from the constant seizing, but I get so ticked off when they come roaring back!
We are still planning to head to Chicago on Monday, October 17 to begin the two weeks of ACTH injections. We are hoping like mad that this will work. If it doesn't...well, that is going to be pretty tough on us. We will be spending the next few days getting ready to be gone for a week. Today I am power-cooking a week's worth of meals for Micah that we will take along. I have lists going--I do love my lists. And we're trying to remember what we had along last time but didn't need and what we didn't have that we really wanted. I know we bought earplugs and Tylenol PM at the pharmacy across the street from Children's Memorial, so those are things we will take, for sure! Also, snacks for David and me. For some reason we had trouble finding time to eat last time. We know more about what we can expect during this admission, and we sure want to hit up our favorite restaurants in the hospital's neighborhood--Nesh (Falafel) and Noodles in the Pot (best Thai I have every had), for starters. There are some advantages to having to be in Chicago.
I'll try to keep this blog current as we go through the next few weeks.
As always happens when he gets really sick, Micah's seizures decreased. The reasons for this are a mystery, but it happens every time. But, unfortunately, after several days of seizure totals in the 10-15 range, yesterday morning he had 8 within one hour, and got above 10 in three hours. So the lull is over. I am grateful that while he's sick he has some reprieve from the constant seizing, but I get so ticked off when they come roaring back!
We are still planning to head to Chicago on Monday, October 17 to begin the two weeks of ACTH injections. We are hoping like mad that this will work. If it doesn't...well, that is going to be pretty tough on us. We will be spending the next few days getting ready to be gone for a week. Today I am power-cooking a week's worth of meals for Micah that we will take along. I have lists going--I do love my lists. And we're trying to remember what we had along last time but didn't need and what we didn't have that we really wanted. I know we bought earplugs and Tylenol PM at the pharmacy across the street from Children's Memorial, so those are things we will take, for sure! Also, snacks for David and me. For some reason we had trouble finding time to eat last time. We know more about what we can expect during this admission, and we sure want to hit up our favorite restaurants in the hospital's neighborhood--Nesh (Falafel) and Noodles in the Pot (best Thai I have every had), for starters. There are some advantages to having to be in Chicago.
I'll try to keep this blog current as we go through the next few weeks.
Thursday, October 6, 2011
The next step
It is easy to complain. It is sometimes much harder (at least for me) to see the Light in the midst of darkness. I have been inspired by several people I know who are fighting cancer and who have given a great gift by their simultaneous acknowledgment of the darkness they feel and their articulate praise for the Light they see even within that.
First, our darkness. Micah continues to have between 30 and 40 seizures per day. They remain the "drop seizures" that he has been having for the past year. He continues to wear his helmet most of the time he is awake. The new medicine we tried for him in the summer, which has some serious risks but also had some success among children with Micah's seizure disorder, has not worked. If anything, he has more seizures now than he did a few months ago. We have been very discouraged. His verbal skills continue to progress at only a glacial pace, which means he has a speech delay in spite of speech therapy. Darkness.
Then last Wednesday we went to Chicago again to consult with Micah's specialist. In that appointment we decided not to try any more drugs at this time. We have tried 5 different anti-seizure meds and one benzodiazapine in the past year and half. So our doctor recommended we try a different approach. We agreed that we need to take the next step in trying for relief for Micah. So we have decided to try a 14-day round of high-dose steroid injections. There is some speculation that seizures are related to inflammation of some sort in the brain. Steroids are used in the treatment of all kinds of inflammation, from asthma to sore knees and have been used successfully to treat seizures that respond to no other intervention. The doctor put the odds at 50/50 and was apologetic about that. I said, "That's amazing!" We have not had odds that good for anything since the first medicine we tried. Even the keto diet had lower statistical rates of success. Light!
This course of action is not without significant risk. It is used only in severe and intractable (uncontrolled) situations. One in 100 patients who do this treatment die from complications. The most common complication is infection, since this high dose of steroids wreaks havoc on the immune system. Micah is fortunate not to have any diagnosis other than epilepsy (such as an immune system or GI problem). This statistic of 1 in 100 takes into account all people who do this treatment, including those with other underlying problems. Still, it is terrifying to consider subjecting one's child to such a risk! We did not make this decision lightly. It is also outrageously expensive. Just the steroid itself will be about $50,000 for the 14-day supply. Yes, you read that right. And, no, we won't have to pay any of that, thanks to our health insurance. We do not that that for granted.
We will be Children's Memorial Hospital in Chicago for his monitoring for several days at the beginning of the treatment. While there we need to learn to give him the injections in order for them to allow us to go home to finish out the fourteen days. (Thanks to a nurse-friend from church who has offered to come to our house and "be the bad guy", we may learn the skill but not actually have to do it!) During that time, as well as for two weeks afterward, he/we will be quarantined. We will not take him to public places. I will be taking those four weeks off of work, and David will also be taking some time, since Micah won't be able to go to daycare. We must take every precaution to avoid his getting sick.
But if it works, it could mean his being completely seizure free, or at least with significantly reduced seizures! This is the next step in this journey. We pray for his safety and healing in this risky process! We are both fearful and hopeful.
We were scheduled to begin this round of injections on Monday, October 10, but Micah suddenly got sick on Tuesday of this week. Really sick. We found out on Wednesday that he has pneumonia in his right lung. Darkness.
But after a valiant effort on his part yesterday NOT to take his antibiotic, we were able to get most of the dose down his throat. We have to give it to him in crushed-pill form, since he can't have the kid-friendly sweet kind--and let me tell you, it tastes extremely bitter and is nearly impossible to hide in anything we are able to give him. Today and then for three more days he needs only one-half of a pill. This morning's dose went down fine with his other cocktail of applesauce, oil, two supplements and three anti-seizure meds. Thank goodness for fast-acting azithromycin. We just hope it does the trick. Last time on amoxicillin he had to take two pills, twice a day for 10 days. And today after just last night's dose he was clearly much better! Light!
So we will delay this steroid treatment for one week and plan to begin on October 17 instead. Micah's immune system is compromised right now and it must be in tip-top shape before we begin wearing it down again with the steroids. We thank you in advance for your thoughts and prayers as we try to wait patiently this week and as we anticipate venturing into the risky, sometimes dark unknown. You continue to help us see the Light.
Melissa
First, our darkness. Micah continues to have between 30 and 40 seizures per day. They remain the "drop seizures" that he has been having for the past year. He continues to wear his helmet most of the time he is awake. The new medicine we tried for him in the summer, which has some serious risks but also had some success among children with Micah's seizure disorder, has not worked. If anything, he has more seizures now than he did a few months ago. We have been very discouraged. His verbal skills continue to progress at only a glacial pace, which means he has a speech delay in spite of speech therapy. Darkness.
Then last Wednesday we went to Chicago again to consult with Micah's specialist. In that appointment we decided not to try any more drugs at this time. We have tried 5 different anti-seizure meds and one benzodiazapine in the past year and half. So our doctor recommended we try a different approach. We agreed that we need to take the next step in trying for relief for Micah. So we have decided to try a 14-day round of high-dose steroid injections. There is some speculation that seizures are related to inflammation of some sort in the brain. Steroids are used in the treatment of all kinds of inflammation, from asthma to sore knees and have been used successfully to treat seizures that respond to no other intervention. The doctor put the odds at 50/50 and was apologetic about that. I said, "That's amazing!" We have not had odds that good for anything since the first medicine we tried. Even the keto diet had lower statistical rates of success. Light!
This course of action is not without significant risk. It is used only in severe and intractable (uncontrolled) situations. One in 100 patients who do this treatment die from complications. The most common complication is infection, since this high dose of steroids wreaks havoc on the immune system. Micah is fortunate not to have any diagnosis other than epilepsy (such as an immune system or GI problem). This statistic of 1 in 100 takes into account all people who do this treatment, including those with other underlying problems. Still, it is terrifying to consider subjecting one's child to such a risk! We did not make this decision lightly. It is also outrageously expensive. Just the steroid itself will be about $50,000 for the 14-day supply. Yes, you read that right. And, no, we won't have to pay any of that, thanks to our health insurance. We do not that that for granted.
We will be Children's Memorial Hospital in Chicago for his monitoring for several days at the beginning of the treatment. While there we need to learn to give him the injections in order for them to allow us to go home to finish out the fourteen days. (Thanks to a nurse-friend from church who has offered to come to our house and "be the bad guy", we may learn the skill but not actually have to do it!) During that time, as well as for two weeks afterward, he/we will be quarantined. We will not take him to public places. I will be taking those four weeks off of work, and David will also be taking some time, since Micah won't be able to go to daycare. We must take every precaution to avoid his getting sick.
But if it works, it could mean his being completely seizure free, or at least with significantly reduced seizures! This is the next step in this journey. We pray for his safety and healing in this risky process! We are both fearful and hopeful.
We were scheduled to begin this round of injections on Monday, October 10, but Micah suddenly got sick on Tuesday of this week. Really sick. We found out on Wednesday that he has pneumonia in his right lung. Darkness.
But after a valiant effort on his part yesterday NOT to take his antibiotic, we were able to get most of the dose down his throat. We have to give it to him in crushed-pill form, since he can't have the kid-friendly sweet kind--and let me tell you, it tastes extremely bitter and is nearly impossible to hide in anything we are able to give him. Today and then for three more days he needs only one-half of a pill. This morning's dose went down fine with his other cocktail of applesauce, oil, two supplements and three anti-seizure meds. Thank goodness for fast-acting azithromycin. We just hope it does the trick. Last time on amoxicillin he had to take two pills, twice a day for 10 days. And today after just last night's dose he was clearly much better! Light!
So we will delay this steroid treatment for one week and plan to begin on October 17 instead. Micah's immune system is compromised right now and it must be in tip-top shape before we begin wearing it down again with the steroids. We thank you in advance for your thoughts and prayers as we try to wait patiently this week and as we anticipate venturing into the risky, sometimes dark unknown. You continue to help us see the Light.
Melissa
Subscribe to:
Posts (Atom)
