The Strep Monster Returns
It has been a really, really rough couple of weeks.
That is my blanket excuse for the lack of phone calls, lack of emails, lack of blog updates, delayed paperwork, a messy house, and a few too many nights of chicken nuggets, fish sticks, and French fries.
Two weeks ago, the kids started the summer program at their old preschool. All three kiddos went for the first week. The first day, Hunter had a very hard time going in the classroom. Peter dropped him off, and he nervously waited as he began to elope, hit, scream, and attempt any old behavior to "go back home." We had our therapist attend the first two days, because we predicted the transition would be a little rough. By Thursday, he walked in no problem...but his aggression was still there. He snapped easily. His "How dare you!" phrase (that I found out is from Word World- he even gave me the exact episode and I for the life of me can't even remember the last time they watched that show) was on repeat mode, and I could sense frustration in the teachers eyes, as well as the parents around us.
That weekend, we were awakened both mornings with a rampant search for electronics. He would even go into Paige's bedroom, both days at 5 AM, searching for her tablet. If he couldn't find a device, he would come downstairs, search our bedroom, the kitchen, and then end up slamming every door in the house until we were all up for good. He wet his bed one night. His pupils were dilated again. And that little phrase, "no rest for the weary" rang true for Peter and I. I remember thinking, something is wrong. He is too obsessed with electronics. His temper is too short- he is slamming doors and screaming much more often. But I attributed it to the start of school and a new transition to summer programs.
Monday after Paige's Vacation Bible School program, I could tell she was either very tired from our busy weekend or something had happened at school. As I listened to her recount the activities, her voice sounded muffled to me. I asked her to open her mouth so I could look in her throat and she immediately screamed, "NO!" She started crying and finally told me, "It's just that my ear has been hurting!" She explained that her throat and ear had been hurting for a bit but she didn't want to tell me because she wanted to keep swimming and didn't want to miss any of her summer programs. When I finally was able to look in her mouth, her tonsils were basically attached to her uvula.
Please don't let it be strep.
I immediately made an appointment with our doctor's office, but our regular doctor was booked. We had an appointment with the nurse practitioner, but I was actually OK with that- she had previously worked for a doctor who treated PANDAS patients. So not only did I not have to explain what it was, but I didn't have to apologize for my frantic need for answers.
Not going to bore you with the details, but as the NP felt Paige's bilateral swollen nodes, even though her throat wasn't red, she didn't have fever (yes, I was freaking out about a second PANDAS child at that point), she decided to run the strep test and it came back quickly positive.
I was almost relieved to hear that diagnosis- could I really use that as the reason for Hunter's regression? I took the scripts and left with the feeling that we were headed down the road of destruction, even though his strep was negative.
What happened next topped it all- he tried to jump out of the car in the pharmacy line, after banging on all the windows, hopping in the trunk behind his seat, screaming, crying...as the impatient pharmacy technician repeatedly asked me for insurance, payment and then told me to come back b/c they couldn't get it ready. I wanted to just bury my head in my hands as he refused to get back in his carseat and the insanity continued...but taking deep breaths, saying a big prayer, we started back home.
The next day, I couldn't obviously go to work, but I dropped the boys off at school to keep him away from her. That afternoon, Peter came home and we high fived as I tried to head out the door to see a patient I missed during the day. Hunter came running out to the car, sobbing, his separation anxiety kicking in. "Don't go Mommy! I need you here! You can't go!" Peter just motioned for me to leave, and I did, and when I returned home an hour and fifteen minutes later, he was still raging. He hadn't calmed down the entire time I was gone, and I bathed him, held him, and slowed his labored breathing.
The entire week was hard. I can't think of a day where I thought I could see the end of the tunnel. The nurse from the doctor's office called me Thursday and asked if we wanted to bring Hunter in on Friday for his well-check and if we were still concerned with strep. I jumped on the chance because I needed a firm answer.
When we pulled in the lot, like the luck that had followed us that week, our parking spot was a mile away. We had been at Barnes and Noble earlier in the day, and he had picked out a new book; I wouldn't let him have it because he had screamed "how dare you" over and over at the checkout counter as every patron gave me the heated stares. He wanted to take the book into the appointment, but I shut the door before he could get it. You can guess what happened next...shoes off, screaming, all in the middle of the parking lot. I basically had to drag him in the building to keep up with the other two kids. When we walked through the automatic doors, he screeched to a halt and screamed, "I'm going to kill you!"
Ugh. Can't begin to tell you how many feelings came over me, again, as people stared at this six year old boy telling him mama he was going to kill her. Embarrassment, anger, confusion, sadness...and of course, to follow through the way I should so as not to give him the attention he was looking for, I grabbed his hand and marched him down to the office.
He sat grumbling his phrases at me as we waited for the nurse to call his name. As much of a germaphobe as I am, I didn't even make him put his Crocs back on his feet. He walked toward the door with his bare feet when we heard his name, but stopped short before entering and started hitting and kicking me. As I again dragged him to the room, he raged like never before. The nurse even left and said she would be back when he calmed down. He had torn all the paper off the table, threw the toys, banged on the walls...I am not joking when I say three of the female nurses knocked on the door, one after the other, and peeked their heads in asking if they could do anything for me. The last one, who has been with us from the beginning, pre-PANDAS, pre-Autism, saw the tears in my eyes and said, "Oh Erika, I am praying for you. I am really, really praying for you. It works!"
Sure hope so, because my arms were stinging from the punches being thrown- and my heart hurt just as bad.
Finally, a male nurse came in to do the stats and take vitals. We scared off the girls, I guess. His strep culture was again negative, but I don't think the staff truly knew what this child was capable of until that day. I reported to them all of the changes we saw when he was exposed to strep, but I don't think anyone became a true believer until that day.
This past weekend, maybe Sunday afternoon, I finally started seeing glimpses of the Hunter pre-strep exposure. Yesterday, he worked for almost four hours with his ABA therapist, and had an amazing day at school. He has been having trouble falling asleep, but I will take that over the constant rages we had dealt with for the past ten days. Paige has one more day left of her antibiotic, and I hope we have bid this monster good-bye for awhile. I can say that the IVIG must have built up his immune system, because even being in the same house, he did not officially "catch" strep. His body just began working like crazy to make antibodies. The PANDAS network lists that "doctors report that after a strep exposure (some children react microbially) or a strep infection – the episode lasts 5 to 6 weeks and then it gradually dies out. Low level anxiety and OCD/TIC issues may remain permanently or fade away after several weeks or months. There are times (cases #1 and #2) where the exacerbation takes 4 to 6 months to remit."
When Hunter had his strep infection last February, we were in the trenches for 5 months. According to Dr. Greenberg, the IVIG is increasing that threshold for tolerability...so if we are really getting better within a two week period, I would call that success.
And an answered prayer.
Y'all, we need a break. We need a breather. We want to be back where we were couple months ago.
We need to be there.
IVIG #5 is scheduled for next Monday. Tomorrow is his last day of his summer program, and I am scrubbing this house from top to bottom to make sure it is gone from our home and mentally from my mind.
Jesus Calling devotional from today:
Rest with Me awhile. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded with uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant companion. Trust that I will equip you fully for whatever awaits you on your journey.
I designed time to be a protection fro you. You couldn't bear to see all your life at once. Though I am unlimited by time, it is in the present moment that I meet you. Refresh yourself in My company, breathing deep draughts of My presence. The highest level of trust is to enjoy Me moment by moment. I am with you, watching over you wherever you go.
Psalm 143:8, Genesis 28:15
You Will Reign- Kris Stanfill
https://www.youtube.com/watch?v=gOZ356wgixE
That is my blanket excuse for the lack of phone calls, lack of emails, lack of blog updates, delayed paperwork, a messy house, and a few too many nights of chicken nuggets, fish sticks, and French fries.
Two weeks ago, the kids started the summer program at their old preschool. All three kiddos went for the first week. The first day, Hunter had a very hard time going in the classroom. Peter dropped him off, and he nervously waited as he began to elope, hit, scream, and attempt any old behavior to "go back home." We had our therapist attend the first two days, because we predicted the transition would be a little rough. By Thursday, he walked in no problem...but his aggression was still there. He snapped easily. His "How dare you!" phrase (that I found out is from Word World- he even gave me the exact episode and I for the life of me can't even remember the last time they watched that show) was on repeat mode, and I could sense frustration in the teachers eyes, as well as the parents around us.
That weekend, we were awakened both mornings with a rampant search for electronics. He would even go into Paige's bedroom, both days at 5 AM, searching for her tablet. If he couldn't find a device, he would come downstairs, search our bedroom, the kitchen, and then end up slamming every door in the house until we were all up for good. He wet his bed one night. His pupils were dilated again. And that little phrase, "no rest for the weary" rang true for Peter and I. I remember thinking, something is wrong. He is too obsessed with electronics. His temper is too short- he is slamming doors and screaming much more often. But I attributed it to the start of school and a new transition to summer programs.
Monday after Paige's Vacation Bible School program, I could tell she was either very tired from our busy weekend or something had happened at school. As I listened to her recount the activities, her voice sounded muffled to me. I asked her to open her mouth so I could look in her throat and she immediately screamed, "NO!" She started crying and finally told me, "It's just that my ear has been hurting!" She explained that her throat and ear had been hurting for a bit but she didn't want to tell me because she wanted to keep swimming and didn't want to miss any of her summer programs. When I finally was able to look in her mouth, her tonsils were basically attached to her uvula.
Please don't let it be strep.
I immediately made an appointment with our doctor's office, but our regular doctor was booked. We had an appointment with the nurse practitioner, but I was actually OK with that- she had previously worked for a doctor who treated PANDAS patients. So not only did I not have to explain what it was, but I didn't have to apologize for my frantic need for answers.
Not going to bore you with the details, but as the NP felt Paige's bilateral swollen nodes, even though her throat wasn't red, she didn't have fever (yes, I was freaking out about a second PANDAS child at that point), she decided to run the strep test and it came back quickly positive.
I was almost relieved to hear that diagnosis- could I really use that as the reason for Hunter's regression? I took the scripts and left with the feeling that we were headed down the road of destruction, even though his strep was negative.
What happened next topped it all- he tried to jump out of the car in the pharmacy line, after banging on all the windows, hopping in the trunk behind his seat, screaming, crying...as the impatient pharmacy technician repeatedly asked me for insurance, payment and then told me to come back b/c they couldn't get it ready. I wanted to just bury my head in my hands as he refused to get back in his carseat and the insanity continued...but taking deep breaths, saying a big prayer, we started back home.
The next day, I couldn't obviously go to work, but I dropped the boys off at school to keep him away from her. That afternoon, Peter came home and we high fived as I tried to head out the door to see a patient I missed during the day. Hunter came running out to the car, sobbing, his separation anxiety kicking in. "Don't go Mommy! I need you here! You can't go!" Peter just motioned for me to leave, and I did, and when I returned home an hour and fifteen minutes later, he was still raging. He hadn't calmed down the entire time I was gone, and I bathed him, held him, and slowed his labored breathing.
The entire week was hard. I can't think of a day where I thought I could see the end of the tunnel. The nurse from the doctor's office called me Thursday and asked if we wanted to bring Hunter in on Friday for his well-check and if we were still concerned with strep. I jumped on the chance because I needed a firm answer.
When we pulled in the lot, like the luck that had followed us that week, our parking spot was a mile away. We had been at Barnes and Noble earlier in the day, and he had picked out a new book; I wouldn't let him have it because he had screamed "how dare you" over and over at the checkout counter as every patron gave me the heated stares. He wanted to take the book into the appointment, but I shut the door before he could get it. You can guess what happened next...shoes off, screaming, all in the middle of the parking lot. I basically had to drag him in the building to keep up with the other two kids. When we walked through the automatic doors, he screeched to a halt and screamed, "I'm going to kill you!"
Ugh. Can't begin to tell you how many feelings came over me, again, as people stared at this six year old boy telling him mama he was going to kill her. Embarrassment, anger, confusion, sadness...and of course, to follow through the way I should so as not to give him the attention he was looking for, I grabbed his hand and marched him down to the office.
He sat grumbling his phrases at me as we waited for the nurse to call his name. As much of a germaphobe as I am, I didn't even make him put his Crocs back on his feet. He walked toward the door with his bare feet when we heard his name, but stopped short before entering and started hitting and kicking me. As I again dragged him to the room, he raged like never before. The nurse even left and said she would be back when he calmed down. He had torn all the paper off the table, threw the toys, banged on the walls...I am not joking when I say three of the female nurses knocked on the door, one after the other, and peeked their heads in asking if they could do anything for me. The last one, who has been with us from the beginning, pre-PANDAS, pre-Autism, saw the tears in my eyes and said, "Oh Erika, I am praying for you. I am really, really praying for you. It works!"
Sure hope so, because my arms were stinging from the punches being thrown- and my heart hurt just as bad.
Finally, a male nurse came in to do the stats and take vitals. We scared off the girls, I guess. His strep culture was again negative, but I don't think the staff truly knew what this child was capable of until that day. I reported to them all of the changes we saw when he was exposed to strep, but I don't think anyone became a true believer until that day.
This past weekend, maybe Sunday afternoon, I finally started seeing glimpses of the Hunter pre-strep exposure. Yesterday, he worked for almost four hours with his ABA therapist, and had an amazing day at school. He has been having trouble falling asleep, but I will take that over the constant rages we had dealt with for the past ten days. Paige has one more day left of her antibiotic, and I hope we have bid this monster good-bye for awhile. I can say that the IVIG must have built up his immune system, because even being in the same house, he did not officially "catch" strep. His body just began working like crazy to make antibodies. The PANDAS network lists that "doctors report that after a strep exposure (some children react microbially) or a strep infection – the episode lasts 5 to 6 weeks and then it gradually dies out. Low level anxiety and OCD/TIC issues may remain permanently or fade away after several weeks or months. There are times (cases #1 and #2) where the exacerbation takes 4 to 6 months to remit."
When Hunter had his strep infection last February, we were in the trenches for 5 months. According to Dr. Greenberg, the IVIG is increasing that threshold for tolerability...so if we are really getting better within a two week period, I would call that success.
And an answered prayer.
Y'all, we need a break. We need a breather. We want to be back where we were couple months ago.
We need to be there.
IVIG #5 is scheduled for next Monday. Tomorrow is his last day of his summer program, and I am scrubbing this house from top to bottom to make sure it is gone from our home and mentally from my mind.
Jesus Calling devotional from today:
Rest with Me awhile. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded with uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant companion. Trust that I will equip you fully for whatever awaits you on your journey.
I designed time to be a protection fro you. You couldn't bear to see all your life at once. Though I am unlimited by time, it is in the present moment that I meet you. Refresh yourself in My company, breathing deep draughts of My presence. The highest level of trust is to enjoy Me moment by moment. I am with you, watching over you wherever you go.
Psalm 143:8, Genesis 28:15
You Will Reign- Kris Stanfill
https://www.youtube.com/watch?v=gOZ356wgixE
Comments
Post a Comment