So... baby monitors.
I am now using a baby
monitor EVERY. SINGLE. NIGHT. on my baby.... my baby who happens to be 11 and a
half years old.
It sounds insane to me.
A baby monitor!
Yet after what happened recently, I don't see how I could ever NOT use the baby monitor.
But baby monitors aren't just for babies, right?
In fact I used it on myself pretty recently as well. And while I have no need to publicize my age, I'm a hell of a lot further from 'baby' age, than my 11 year old is.
After my back surgery I used the baby monitor for a few days when I didn't have the strength to get out of bed or even pick up my phone to text Yitz that I needed help. So we kept the baby monitor on, and while Yitz was working from home he was able to hear me each time I needed help.
I mean, that's obviously okay, right?
And since I couldn't get out of bed, Yitz had to be the one to dose Coby. Since beginning OIT over three years ago, up until my back surgery, I had been the ONLY one to ever dose Coby. I was scared not to be the one doing the dosing, and Yitz said he didn't want to dose Coby either. So over the course of 3 plus years, which comes to over a thousand times of dosings, I did every single one. No matter what.
If Coby was supposed to dose while I was taking a shabbos nap, I even instructed them to wake me so I could be the one to dose him.
But after the surgery. I couldn't move. Yitz HAD to dose him. Even once I was able to get out of bed, I still wasn't able to dose him because I wasn't able to bend over to get to where the peanuts are kept, nor was I capable of lifting the heavy canister of peanuts, so Yitz continued to dose Coby- for probably close to two weeks before I took over again.
Then I recently had the flu- so Yitz dosed him again.
So while I still am the one to dose Coby if I am physically able to, we both know Yitz can do it too, so it is good we got over that threshold. In fact, if dosing were to fall out during my shabbos nap, I don't think I would even ask them to wake me up to dose Coby. Yitz would just go ahead and do it. PROGRESS!
So there's that. Some good did come out of some hardships. In fact, before heading into my surgery, part of me was afraid of dying. "They are intubating me! What if I don't wake up?" I begged Yitz to watch over Coby and to promise me to never forget to dose Coby and to always watch for those reactions. My biggest fear upon dying was how Coby would do with all this peanut stuff. I was terrified as to what would happen if I were not here to take care of it all.
But thank G-d, I did wake up. And WE continue to dose him. And to watch him.
So I dose Coby.
But Yitz can too if needed.
I also realized Coby himself needed to become more independent with his dosing. He had still been scared to touch the peanuts and put it in his own mouth. (For dosing- we drown the peanuts in yogurt to help mask the taste and feed it to him two peanuts at a time.)
What's going to happen when he goes off to college? Will he continue dosing? Will this fear become even deeper ingrained in him? He needs to learn to do it himself!
And so I started having him be more involved with his dosing. We did it in baby steps. It started with him feeding himself a couple of the spoons of peanuts and at times being the one to put the peanuts on the spoon before feeding it to himself.
Each time he did it on his own we celebrated and exclaimed that he was becoming more and more free as he realized he didn't really NEED me.
But all that came to a grinding halt.
He started having reactions (and no, it was not dependent on whether it was a day I had him partially dose himself). He was having reactions nearly weekly.
Some reactions were resolved by just benadryl. Some reactions needed both benadryl and steroids. But he had about 6 reactions in 8 weeks time.
Why was this happening again?
In fact this afternoon was the first time he had his full dose of 8 peanuts in the last 25 days!!!!
It's been quite the roller coaster.
He recently had two reactions that nearly landed him in the hospital.
On our first day in Disney, a few hours after dosing, he was putting on his pajamas and said, "Mom, why did you bring me such itchy pajamas?" I said, "hmmm, maybe they are getting too tight on you, sleep in a tee shirt and lounge pants," but he continued to scratch. And cough. And his ear was red. And hives. And he got so itchy he started pulling at his hair to deal with the itchiness. That was a first.
We gave him the maximum amount of benadryl and steroids but it didn't seem to be helping.
We paged the doctor as he continued to cough, mentally gearing up to epi him and head to a hospital in Orlando.
The doctor told us to go beyond the max and give him another half a teaspoon of both benadryl and steroids. She said if the reaction didn't get worse in the next 20 minutes he should be okay.
Thankfully that took care of it and his reaction calmed down.
Since we now have the freedom of skipping dosing one day a week, we had planned on two days during vacation to skip dosing and the doctor said to also keep him at 6 peanuts instead of 8 for the rest of vacation.
We did that and thankfully all was well.
Once we got home I decided to start building him back up to 8 peanuts half a peanut at a time. We got to 6 and a half. Then 7. Then 7 and a half.
That night he said "I'm all itchy." Thankfully it subsided on its own.
Since he had a tiny reaction, I decided not to updose him the following day, but instead we got a call from the nurse at school. "Coby is complaining that he doesn't feel well. He doesn't have fever, but he never ever comes here to complain about anything." We picked Coby up and I decided that even though he didn't have fever, something was going on, so I down-dosed him to 5 peanuts.
All was well. I decided to put on the baby monitor in case he was getting sick he could call out to me.
The next morning at 5:30 he called out to me. "Mom, I can't lift my head off the pillow." He had 103.1. He tested negative for flu and strep and his high fever never came back. (That evening he had 99.7 without any meds in his system). The doctor said we can keep him at 5 peanuts that day and if fever stayed away to updose him by one peanut each afternoon.
We kept him home from school again on Thursday and planned on sending him back Friday.
He was completely fine all day Thursday and so I dosed him at 4PM with the 6 peanuts. All was well. He went to bed at about 9PM.
Thankfully I hadn't turned off the baby monitor because at 4AM I hear some coughing and he calls out, "Mom. Mom. Help. I can't breathe!"
I run into his room and am not even thinking about his dosing. After all 12 hours had passed. He tells me he can't stop coughing and is all stuffy. I think he is catching a cold and am about to give him a second pillow but instead I ask, "Are you itchy?"
He replied, "All over."
I turn on the light and see he has hives. I go to the kitchen with him and give him the max benadryl and steroids. He tries talking to me but his voice sounded extremely tight. It's not getting any better. At that point I wake Yitz (who had been sleeping in the basement, since I was still having hacking coughs throughout the night still from the flu and we didn't want it to keep him up all night). Coby begins scratching at his legs and we see the hives travel down his arms to his wrist, which had never happened before. He continues to cough and he can't really talk.
We were about to epi him and call 911, when we decide to do what the doctor had us do in Florida and give him that extra half a teaspoon of benadryl and steroids.
It worked and calmed down the reaction.
THE REACTION THAT WAS 12 HOURS POST A 6 PEANUT DOSE!
I had Coby sleep in Yitz' bed next to me so I could really monitor him and we kept him home from school because we feared a biphasic reaction. (a biphasic reacton is a secondary and more extreme reaction that can happen a few after the first reaction, it happens in about 25% of allergic reactions).
We don't know why this is happening. The doctor doesn't know why this is happening. He said it is EXTREMELY rare for someone to react 12 hours post dosing- but they HAVE seen it happen before. They also said most people after graduating OIT have no problems at all, but we all know Coby is extremely reactive.
They told us to keep him at 5 peanuts for several days and add Zyrtec to his daily regimen. After several days I began increasing Coby's dose by HALF a peanut (instead of the full peanut they originally advised), and today was the first time he was back up at his full dose of eight.
Coby was SUPPOSED to have his allergist appointment this past Monday but in order to do his testing he'd have to have no medicine in his system (no benadryl, no steroids, no zyrtec). The appointment was pushed off to the end of February and we were told to wean him off the zyrtec about a week before the appointment and hope for smooth sailing so we don't have to push it off again.
...and the baby monitor remains on.
How can I EVER turn off that monitor again? What if it had been off that night of his big reaction? What if he was calling out to me that night and I couldn't hear him over my sound machine and he was choking and couldn't get to me?! Thank G-d he had been sick a few days earlier or that monitor would not have been on! Knowing that he reacted TWELVE HOURS after a DOWNDOSE is terrifying me. And it was no minor reaction.
In truth, that reaction deserved an epipen. He was coughing and his voice was tight. I played with fire. I was hoping and praying medicine would work because I can't start epiing him every other week as both the reactions in Disney and this one 2 weeks later may have warranted.
This is the first real time post graduation I begin to doubt it all.
Yes OIT is a wonderful thing and the closest thing to a cure there may ever be. Yes MOST people have no problems with it.
But Coby does.
And it seems every time we strip away the more 'potent' form of dosing, Coby begins reacting to less and less.
He was reacting a lot to pb powder and peanut butter- so we decide not to dose with that anymore
He was doing fine on his daily 12 peanuts a day dosing, but then maintenance switched down to 8 peanuts a day.
Now he's having reactions to the 8 peanuts... and a big reaction to 6 peanuts.
I do NOT want the doctor to say we should lower his dose to something else, because then I'm afraid he will begin reacting to less and less and lose all the protection and freedom we worked so hard for.
OIT has given him so much! The world has opened up to him.... it's just the dosing and apparently the 12 hours that follow (instead of the 2 for most), that I have to be worried about.
-One of my pre OIT fears was how he's going to go to any of his friends' bar and bat mitzvahs? Now he CAN. In the real world he's free to eat whatever he wants (other than peanut butter). The bar and bat mitzvah season has begun. He already has been invited to two friends' bat mitzvahs. (which in all honesty he didn't go to because, "they're girls--- I'm not friends with the girls. I don't want to go!")
The bar mitzvahs though are beginning THIS summer already.
It sounds insane to me.
A baby monitor!
Yet after what happened recently, I don't see how I could ever NOT use the baby monitor.
But baby monitors aren't just for babies, right?
In fact I used it on myself pretty recently as well. And while I have no need to publicize my age, I'm a hell of a lot further from 'baby' age, than my 11 year old is.
After my back surgery I used the baby monitor for a few days when I didn't have the strength to get out of bed or even pick up my phone to text Yitz that I needed help. So we kept the baby monitor on, and while Yitz was working from home he was able to hear me each time I needed help.
I mean, that's obviously okay, right?
And since I couldn't get out of bed, Yitz had to be the one to dose Coby. Since beginning OIT over three years ago, up until my back surgery, I had been the ONLY one to ever dose Coby. I was scared not to be the one doing the dosing, and Yitz said he didn't want to dose Coby either. So over the course of 3 plus years, which comes to over a thousand times of dosings, I did every single one. No matter what.
If Coby was supposed to dose while I was taking a shabbos nap, I even instructed them to wake me so I could be the one to dose him.
But after the surgery. I couldn't move. Yitz HAD to dose him. Even once I was able to get out of bed, I still wasn't able to dose him because I wasn't able to bend over to get to where the peanuts are kept, nor was I capable of lifting the heavy canister of peanuts, so Yitz continued to dose Coby- for probably close to two weeks before I took over again.
Then I recently had the flu- so Yitz dosed him again.
So while I still am the one to dose Coby if I am physically able to, we both know Yitz can do it too, so it is good we got over that threshold. In fact, if dosing were to fall out during my shabbos nap, I don't think I would even ask them to wake me up to dose Coby. Yitz would just go ahead and do it. PROGRESS!
So there's that. Some good did come out of some hardships. In fact, before heading into my surgery, part of me was afraid of dying. "They are intubating me! What if I don't wake up?" I begged Yitz to watch over Coby and to promise me to never forget to dose Coby and to always watch for those reactions. My biggest fear upon dying was how Coby would do with all this peanut stuff. I was terrified as to what would happen if I were not here to take care of it all.
But thank G-d, I did wake up. And WE continue to dose him. And to watch him.
So I dose Coby.
But Yitz can too if needed.
I also realized Coby himself needed to become more independent with his dosing. He had still been scared to touch the peanuts and put it in his own mouth. (For dosing- we drown the peanuts in yogurt to help mask the taste and feed it to him two peanuts at a time.)
What's going to happen when he goes off to college? Will he continue dosing? Will this fear become even deeper ingrained in him? He needs to learn to do it himself!
And so I started having him be more involved with his dosing. We did it in baby steps. It started with him feeding himself a couple of the spoons of peanuts and at times being the one to put the peanuts on the spoon before feeding it to himself.
Each time he did it on his own we celebrated and exclaimed that he was becoming more and more free as he realized he didn't really NEED me.
But all that came to a grinding halt.
He started having reactions (and no, it was not dependent on whether it was a day I had him partially dose himself). He was having reactions nearly weekly.
Some reactions were resolved by just benadryl. Some reactions needed both benadryl and steroids. But he had about 6 reactions in 8 weeks time.
Why was this happening again?
In fact this afternoon was the first time he had his full dose of 8 peanuts in the last 25 days!!!!
It's been quite the roller coaster.
He recently had two reactions that nearly landed him in the hospital.
On our first day in Disney, a few hours after dosing, he was putting on his pajamas and said, "Mom, why did you bring me such itchy pajamas?" I said, "hmmm, maybe they are getting too tight on you, sleep in a tee shirt and lounge pants," but he continued to scratch. And cough. And his ear was red. And hives. And he got so itchy he started pulling at his hair to deal with the itchiness. That was a first.
We gave him the maximum amount of benadryl and steroids but it didn't seem to be helping.
We paged the doctor as he continued to cough, mentally gearing up to epi him and head to a hospital in Orlando.
The doctor told us to go beyond the max and give him another half a teaspoon of both benadryl and steroids. She said if the reaction didn't get worse in the next 20 minutes he should be okay.
Thankfully that took care of it and his reaction calmed down.
Since we now have the freedom of skipping dosing one day a week, we had planned on two days during vacation to skip dosing and the doctor said to also keep him at 6 peanuts instead of 8 for the rest of vacation.
We did that and thankfully all was well.
Once we got home I decided to start building him back up to 8 peanuts half a peanut at a time. We got to 6 and a half. Then 7. Then 7 and a half.
That night he said "I'm all itchy." Thankfully it subsided on its own.
Since he had a tiny reaction, I decided not to updose him the following day, but instead we got a call from the nurse at school. "Coby is complaining that he doesn't feel well. He doesn't have fever, but he never ever comes here to complain about anything." We picked Coby up and I decided that even though he didn't have fever, something was going on, so I down-dosed him to 5 peanuts.
All was well. I decided to put on the baby monitor in case he was getting sick he could call out to me.
The next morning at 5:30 he called out to me. "Mom, I can't lift my head off the pillow." He had 103.1. He tested negative for flu and strep and his high fever never came back. (That evening he had 99.7 without any meds in his system). The doctor said we can keep him at 5 peanuts that day and if fever stayed away to updose him by one peanut each afternoon.
We kept him home from school again on Thursday and planned on sending him back Friday.
He was completely fine all day Thursday and so I dosed him at 4PM with the 6 peanuts. All was well. He went to bed at about 9PM.
Thankfully I hadn't turned off the baby monitor because at 4AM I hear some coughing and he calls out, "Mom. Mom. Help. I can't breathe!"
I run into his room and am not even thinking about his dosing. After all 12 hours had passed. He tells me he can't stop coughing and is all stuffy. I think he is catching a cold and am about to give him a second pillow but instead I ask, "Are you itchy?"
He replied, "All over."
I turn on the light and see he has hives. I go to the kitchen with him and give him the max benadryl and steroids. He tries talking to me but his voice sounded extremely tight. It's not getting any better. At that point I wake Yitz (who had been sleeping in the basement, since I was still having hacking coughs throughout the night still from the flu and we didn't want it to keep him up all night). Coby begins scratching at his legs and we see the hives travel down his arms to his wrist, which had never happened before. He continues to cough and he can't really talk.
We were about to epi him and call 911, when we decide to do what the doctor had us do in Florida and give him that extra half a teaspoon of benadryl and steroids.
It worked and calmed down the reaction.
THE REACTION THAT WAS 12 HOURS POST A 6 PEANUT DOSE!
I had Coby sleep in Yitz' bed next to me so I could really monitor him and we kept him home from school because we feared a biphasic reaction. (a biphasic reacton is a secondary and more extreme reaction that can happen a few after the first reaction, it happens in about 25% of allergic reactions).
We don't know why this is happening. The doctor doesn't know why this is happening. He said it is EXTREMELY rare for someone to react 12 hours post dosing- but they HAVE seen it happen before. They also said most people after graduating OIT have no problems at all, but we all know Coby is extremely reactive.
They told us to keep him at 5 peanuts for several days and add Zyrtec to his daily regimen. After several days I began increasing Coby's dose by HALF a peanut (instead of the full peanut they originally advised), and today was the first time he was back up at his full dose of eight.
Coby was SUPPOSED to have his allergist appointment this past Monday but in order to do his testing he'd have to have no medicine in his system (no benadryl, no steroids, no zyrtec). The appointment was pushed off to the end of February and we were told to wean him off the zyrtec about a week before the appointment and hope for smooth sailing so we don't have to push it off again.
...and the baby monitor remains on.
How can I EVER turn off that monitor again? What if it had been off that night of his big reaction? What if he was calling out to me that night and I couldn't hear him over my sound machine and he was choking and couldn't get to me?! Thank G-d he had been sick a few days earlier or that monitor would not have been on! Knowing that he reacted TWELVE HOURS after a DOWNDOSE is terrifying me. And it was no minor reaction.
In truth, that reaction deserved an epipen. He was coughing and his voice was tight. I played with fire. I was hoping and praying medicine would work because I can't start epiing him every other week as both the reactions in Disney and this one 2 weeks later may have warranted.
This is the first real time post graduation I begin to doubt it all.
Yes OIT is a wonderful thing and the closest thing to a cure there may ever be. Yes MOST people have no problems with it.
But Coby does.
And it seems every time we strip away the more 'potent' form of dosing, Coby begins reacting to less and less.
He was reacting a lot to pb powder and peanut butter- so we decide not to dose with that anymore
He was doing fine on his daily 12 peanuts a day dosing, but then maintenance switched down to 8 peanuts a day.
Now he's having reactions to the 8 peanuts... and a big reaction to 6 peanuts.
I do NOT want the doctor to say we should lower his dose to something else, because then I'm afraid he will begin reacting to less and less and lose all the protection and freedom we worked so hard for.
OIT has given him so much! The world has opened up to him.... it's just the dosing and apparently the 12 hours that follow (instead of the 2 for most), that I have to be worried about.
-One of my pre OIT fears was how he's going to go to any of his friends' bar and bat mitzvahs? Now he CAN. In the real world he's free to eat whatever he wants (other than peanut butter). The bar and bat mitzvah season has begun. He already has been invited to two friends' bat mitzvahs. (which in all honesty he didn't go to because, "they're girls--- I'm not friends with the girls. I don't want to go!")
The bar mitzvahs though are beginning THIS summer already.
-He also was able to go to
his cousin's bar mitzvah which was a potluck shabbos, followed by the bar
mitzvah party that he otherwise would never have been able to go to. He had a
blast.
 |
| Yep peanut butter. His cousins were eating it after shabbos and while he hated the smell, we had no fear of a reaction and was able to eat whatever he wanted on shabbos (nothing was made with peanut butter) |
 |
| At the bar mitzvah party. Yum! |
-He is going to another cousin's bar mitzvah this weekend, which he wouldn't be able to go to without OIT.
-He went to a cousin's upsherin this past week that had catered food and he was
able to eat whatever he wanted.
 |
| Cutting Yosef's hair (you may be able to tell Coby's cheeks are red--- that is a side effect from the zyrtec) |
-We celebrated his 3rd OITversary where he was allowed to order anything off the menu.
-He is in a
carpool with 3 other kids- which he wasn't able to do before OIT because who
knows what was eaten in the car he'd be getting a ride home in and pre OIT breathing it in, or touching where it was could cause a reaction. Being able to go in a carpool is sooooo
freeing.
-We got an e mail from his teacher saying that she sees some kids bringing in peanut m & ms, and to please remember the school is nut free. I found it annoying that parents were doing this, but I wasn't AFRAID.
-He went to a family Chanukah party- and ate what he wanted. No worries.
-I read how recently on a few separate occasions, peanut butter was found smeared all over subways poles in Manhattan. We don't really ride subways, but still something I wouldn't have to fear, because even though he can't EAT peanut butter, he wouldn't react by touching or being in the vicinity of peanut butter, which he would have before OIT.
-In Disney he was able to eat popcorn, lots of ice-cream and go to a character meal with us not having to check ingredients and him being able to just be a kid and eat with no fear.
 |
| Dole Whips |
 |
| Mickey's kitchen sink |
 |
| Mickey ice cream bars |
 |
| Topolino's Character breakfast |
In the past we've had to shlepp all safe foods from NJ including breads, challahs, snacks etc. Post OIT we just buy whatever kosher things they have there--- including the snacks, the breads and the challah. It is wonderful!
 |
| In Florida store- he wanted to buy all those Entenmann's knowing he could! We only bought chocolate donuts though. |
-And all of the above was just in the past 3 or so months. Oh... and Purim is just one month away--- and because of OIT I don't have to censor a good chunk of the shalach manots (while he can't have the reeses pieces, we can still have it in the house, which we couldn't do before OIT.)
So while this is terrifying to me, with the 12 hour post dosing crazy reaction, and me questioning this whole OIT thing, how can I take away all that OIT did give him.
All I know, is that 'baby monitor' is going to be staying on, and I just don't see how I can ever turn it off again.
EDITING TO ADD 2 DAYS LATER--- Lo & Behold he is sick once again. Woke up with 104. So after two days of being back at 8--- finally, doctor had us skip today. Two high fevers in 10 days--- this is ridiculous. Waiting to exhale...
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