TODAY is the day
We are still battling the regression. We have taken daily notes, analyzed the data, and have tried to find the missing component to this confusing equation.
What went wrong?
I talked with Dr. G's nurse this past week after I called her regarding my concerns with the acute change in behavior that is still lingering. I was concerned that we were experiencing effects from the IVIG. She reaffirmed that the side effects are often when IVIG is given too fast and too much- we aren't pushing those boundaries with his dosing. His opinion was that there is something else going on in his immune system that we can't see; whatever is underlying is flaring and we are left with behaviors that had been extinguished. IVIG doesn't negatively affect the immune system- it either is helpful, or unfortunately, doesn't make a difference in some of the patients he treats.
I had inquired about the possibility that we had been seeing results from the steroids, not the IVIG. She didn't think that the dosage he received would have been enough to impact behavior as much as it did.
In relation to Paige's recent strep, he doesn't know why the behavior seemed to change in succession with strep, but he didn't have enough concern to recommend antibiotics (after previous throat culture was negative).
His recommendation was to finish this series of IVIG in a couple of weeks, have his previous ABA therapist assess him, and meet to discuss the future of Hunter's treatments.
After an incredibly busy, stressful week (including an AC unit that hasn't worked since last Sunday and it is in the high 90s), I had a work dinner Friday night after I finished seeing patients. Peter came home to relieve me so I could head out the door, and Hunter' separation anxiety (which has been heightened) kicked in full force. He ran out the door, and told me not to go, and then continued to say, "How dare you!" to Peter...for the next hour and fifty minutes. I walked in the door to Hunter standing in the bathtub, refusing to bathe, with his finger pointed at Peter, saying "How dare you."
He had repeated that phrase at least 2000 times in the time I was gone.
When I put him to bed that night, he told me he just didn't want me to go. I asked him if I came home, and after replying yes, I asked him, "Don't I always come back home?"
My heart was torn in so many directions- guilt for leaving him, sadness for having left Peter to deal with the behavior for so long, and the realization that this child was NOT getting better.
We were starting to lose him again.
The pupils were dilated, the doors had been slammed, and the repetitive phrases had not ceased- even with ignoring them.
Saturday morning, we woke to slamming cabinets and drawers searching for candy and electronics- and as I started to leave for a bike ride, the "how dare you's" returned and as I cycled harder, faster, stronger...I realized I was riding to try and escape the reality that has consumed our family yet again.
Regression.
I pulled off on a side street and called the pediatrician. If the nurse practitioner who used to work for a PANDAS doctor was there, I would take it as a sign and bring him in.
She was the one (out of 10) who was at the office that Saturday.
We were there within the next hour and she listened to me recount the recent illnesses (she had seen Peyton with his 104 fever and Paige with her strep), and she agreed that the regression had been going on too long- and agreed to write a script.
I am not one of those parents who runs to the doctor hoping for a script to give a "quick fix" to a problem. We have even waited out ear infections before, to see if they are viral (research shows the majority are viral based)instead of just giving the immediate antibiotic.
But at this point, I was desperate to figure out if this was the reason for our decline. They swabbed his throat, nose, and rectum, since strep is such an evil monster that sneaks into several places in the body. They attempted to get blood, and as he screamed murder and tore apart the room, I threw my hands up.
Enough is enough.
The sweet nurse told me how much information they could get from the blood, but I couldn't do it again.
I could not hold my boy, or watch the three nurses hold him on the table, to get answers.
Today, I went on blind faith.
When Paige first was diagnosed with strep and we had the decline, I almost started his antibiotic that we had from his allergist/immunologist. But I waited it out, not wanting to destroy good gut flora, give an unnecessary antibiotic, and not going against the advice of our main treating physician.
However, we have no other options. Either we figure this thing out prior to his next round of IVIG, or we risk the end of treatment.
The end of what I had always pictured to be the victory race.
We started the antibiotic yesterday afternoon, and this morning, we actually made it through church. We didn't only make it through Mass, but we didn't have one "how dare you."
Oh God, please tell me our faith is just what we needed to find the answer.
This afternoon, we had a few phrases and hitting with electronic removal, but the recovery was faster.
Tonight, bedtime was a struggle. He hit me over and over and over again, and as I sat there, singing "Amazing Grace" and pretending not to notice my son hitting and pinching me, I just stopped.
I stopped mid-word, and got up from the bed, left the room, and shut the door to the reality that my faith was being squashed.
Realistically, I shouldn't expect 100% compliance after one day of antibiotics. But when you build up hope in your faith and see it crashing before your eyes, you can't help but feel defeated.
In our bulletin today: "God's word, God's instructions and guidance, are intended for us. Most of us perceive that stewardship as practicing our faith regularly, worshipping and praying often. Part of that worship is nonetheless is to listen to, to consider, and to act on God's word. In that way we are fulfilling His will; His Word is achieving the purpose for which it was sent. St Patrick himself said, "May the strength of God pilot us; may the wisdom of God instruct us; may the hand of God protect us; may the Word of God direct us."
I am so praying that my mother's intuition is from God himself, telling me to follow my gut and treat this underlying infection.
Today is over. Tomorrow is a new day.
I will wake in the morning and tell myself..
TODAY is the day.
TODAY we will see a change.
TODAY you will prove the value of faith.
https://www.youtube.com/watch?v=k5Q-faAkHkg
TODAY
I know you sit and wonder
Where you are going.
I know the things you've been through
are sometimes hard to let go.
It was your faith that bought you to this place
That gave you words to say
I'm telling you.
Not where you've been,
not who you were
Not the man you are today.
it's what I see, it's what I know.
I don't care about the rest.
You are free you've been made new.
Know that I look up to you.
For who you are, who you are....
Today.
Sometimes you feel so empty.
Don't quite know where to go.\
I'm telling you, things are going to get better.
You've gotta see it through.
Cause it was strength that bought you to this place
That gave you hands of grace,
I'm telling you.
Not where you've been,
not who you were
Not the man you are today.
it's what I see, it's what I know.
I don't care about the rest.
You are free you've been made new.
Know that I look up to you.
For who you are, who you are....
Today.
It's easy to keep thinking bout what you could have been.
But look at what you are.
IA child of the creator, the risen son of man
lives inside of you.
Now yesterday is over, the past is in the past,
You've been set free.
Not where you've been, not where you are.
It's what I see, it's what I know.
I don't care about the rest.
You are free, you've been made new.
Know that I look up to you,
For who you are,
Today.
What went wrong?
I talked with Dr. G's nurse this past week after I called her regarding my concerns with the acute change in behavior that is still lingering. I was concerned that we were experiencing effects from the IVIG. She reaffirmed that the side effects are often when IVIG is given too fast and too much- we aren't pushing those boundaries with his dosing. His opinion was that there is something else going on in his immune system that we can't see; whatever is underlying is flaring and we are left with behaviors that had been extinguished. IVIG doesn't negatively affect the immune system- it either is helpful, or unfortunately, doesn't make a difference in some of the patients he treats.
I had inquired about the possibility that we had been seeing results from the steroids, not the IVIG. She didn't think that the dosage he received would have been enough to impact behavior as much as it did.
In relation to Paige's recent strep, he doesn't know why the behavior seemed to change in succession with strep, but he didn't have enough concern to recommend antibiotics (after previous throat culture was negative).
His recommendation was to finish this series of IVIG in a couple of weeks, have his previous ABA therapist assess him, and meet to discuss the future of Hunter's treatments.
After an incredibly busy, stressful week (including an AC unit that hasn't worked since last Sunday and it is in the high 90s), I had a work dinner Friday night after I finished seeing patients. Peter came home to relieve me so I could head out the door, and Hunter' separation anxiety (which has been heightened) kicked in full force. He ran out the door, and told me not to go, and then continued to say, "How dare you!" to Peter...for the next hour and fifty minutes. I walked in the door to Hunter standing in the bathtub, refusing to bathe, with his finger pointed at Peter, saying "How dare you."
He had repeated that phrase at least 2000 times in the time I was gone.
When I put him to bed that night, he told me he just didn't want me to go. I asked him if I came home, and after replying yes, I asked him, "Don't I always come back home?"
My heart was torn in so many directions- guilt for leaving him, sadness for having left Peter to deal with the behavior for so long, and the realization that this child was NOT getting better.
We were starting to lose him again.
The pupils were dilated, the doors had been slammed, and the repetitive phrases had not ceased- even with ignoring them.
Saturday morning, we woke to slamming cabinets and drawers searching for candy and electronics- and as I started to leave for a bike ride, the "how dare you's" returned and as I cycled harder, faster, stronger...I realized I was riding to try and escape the reality that has consumed our family yet again.
Regression.
I pulled off on a side street and called the pediatrician. If the nurse practitioner who used to work for a PANDAS doctor was there, I would take it as a sign and bring him in.
She was the one (out of 10) who was at the office that Saturday.
We were there within the next hour and she listened to me recount the recent illnesses (she had seen Peyton with his 104 fever and Paige with her strep), and she agreed that the regression had been going on too long- and agreed to write a script.
I am not one of those parents who runs to the doctor hoping for a script to give a "quick fix" to a problem. We have even waited out ear infections before, to see if they are viral (research shows the majority are viral based)instead of just giving the immediate antibiotic.
But at this point, I was desperate to figure out if this was the reason for our decline. They swabbed his throat, nose, and rectum, since strep is such an evil monster that sneaks into several places in the body. They attempted to get blood, and as he screamed murder and tore apart the room, I threw my hands up.
Enough is enough.
The sweet nurse told me how much information they could get from the blood, but I couldn't do it again.
I could not hold my boy, or watch the three nurses hold him on the table, to get answers.
Today, I went on blind faith.
When Paige first was diagnosed with strep and we had the decline, I almost started his antibiotic that we had from his allergist/immunologist. But I waited it out, not wanting to destroy good gut flora, give an unnecessary antibiotic, and not going against the advice of our main treating physician.
However, we have no other options. Either we figure this thing out prior to his next round of IVIG, or we risk the end of treatment.
The end of what I had always pictured to be the victory race.
We started the antibiotic yesterday afternoon, and this morning, we actually made it through church. We didn't only make it through Mass, but we didn't have one "how dare you."
Oh God, please tell me our faith is just what we needed to find the answer.
This afternoon, we had a few phrases and hitting with electronic removal, but the recovery was faster.
Tonight, bedtime was a struggle. He hit me over and over and over again, and as I sat there, singing "Amazing Grace" and pretending not to notice my son hitting and pinching me, I just stopped.
I stopped mid-word, and got up from the bed, left the room, and shut the door to the reality that my faith was being squashed.
Realistically, I shouldn't expect 100% compliance after one day of antibiotics. But when you build up hope in your faith and see it crashing before your eyes, you can't help but feel defeated.
In our bulletin today: "God's word, God's instructions and guidance, are intended for us. Most of us perceive that stewardship as practicing our faith regularly, worshipping and praying often. Part of that worship is nonetheless is to listen to, to consider, and to act on God's word. In that way we are fulfilling His will; His Word is achieving the purpose for which it was sent. St Patrick himself said, "May the strength of God pilot us; may the wisdom of God instruct us; may the hand of God protect us; may the Word of God direct us."
I am so praying that my mother's intuition is from God himself, telling me to follow my gut and treat this underlying infection.
Today is over. Tomorrow is a new day.
I will wake in the morning and tell myself..
TODAY is the day.
TODAY we will see a change.
TODAY you will prove the value of faith.
https://www.youtube.com/watch?v=k5Q-faAkHkg
TODAY
I know you sit and wonder
Where you are going.
I know the things you've been through
are sometimes hard to let go.
It was your faith that bought you to this place
That gave you words to say
I'm telling you.
Not where you've been,
not who you were
Not the man you are today.
it's what I see, it's what I know.
I don't care about the rest.
You are free you've been made new.
Know that I look up to you.
For who you are, who you are....
Today.
Sometimes you feel so empty.
Don't quite know where to go.\
I'm telling you, things are going to get better.
You've gotta see it through.
Cause it was strength that bought you to this place
That gave you hands of grace,
I'm telling you.
Not where you've been,
not who you were
Not the man you are today.
it's what I see, it's what I know.
I don't care about the rest.
You are free you've been made new.
Know that I look up to you.
For who you are, who you are....
Today.
It's easy to keep thinking bout what you could have been.
But look at what you are.
IA child of the creator, the risen son of man
lives inside of you.
Now yesterday is over, the past is in the past,
You've been set free.
Not where you've been, not where you are.
It's what I see, it's what I know.
I don't care about the rest.
You are free, you've been made new.
Know that I look up to you,
For who you are,
Today.
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