Thursday, December 29, 2016

OH MY GAWDDDDDD---- HE DID IT!!!!!!!!!!!!!!! (mostly!)

Once again when carpool dropped him off he eagerly dashed inside to pee & change & get going to his updose appointment.
On the way there I asked him, "Are you feeling good Coby?" And he responded in a powerful voice, "YEAH, I'M FEELING STRONG!!!!"

That's the right attitude!!!!

Obviously we did not tell Coby the significance of this particular updose but as always he faced it like a champ!
CHAMPION WARRIOR JUST AS MY SHIRT SAYS!

They checked him out and declared him good to updose and so he did.... My brave brave boy.
Actually truth be told, he didn't end up enjoying it as much as he usually does because they are beginning to dilute the peanut protein less and less at this point. So although he went up 150 times, the liquid dropped down to 25% it was. The color, once it was in the syringe, was practically see through instead of deep purple, and he HATED it.

For comparison's sake-  here's the jar of solution from day one compared to our take home jar today--( and when pulled into the syringe it loses even more color.)
October 31st 1st take home jar
Today's take home jar

The hour of observation passed reasonably well. Coby entertained himself on his phone and was even chanting cheers to himself. GO COBY GO COBY GO GO GO COBY! (If he didn't have to keep his voice down, he would have been shouting it from rooftops!)

He also spent a good chunk of time cracking himself up and hysterically laughing. I love that kid's spirit!

After the nurse's final check just before the doctor walked in I noticed some splotches on his face and began to panic a bit. I wasn't sure if my eyes were deceiving me or if something was creeping up now. His cheeks seemed redder and I noticed a couple of white raised spots with red in the center.

The doctor walked in and I showed her what I saw. "Am I seeing things?" I even asked her. She looked and admitted she saw it too and felt his cheeks and was able to feel raised spots, BUT she said she believed it to be a bout of eczema brought on by ingesting his allergen and said she was pretty confident he was okay and declared Coby "passed this updose!" She did say if we were worried we were welcome to hang out a bit. We took our time gathering our things and getting out of the building. We kept stopping to examine his cheeks to the point Coby exclaimed, "STOP LOOKING AT ME SO CURIOUSLY!" LOL.

Since I had Yitz with me I decided to sit in the back with Coby so I could watch him a bit closer. While most reactions happen within that first hour, it's not unheard of for one to occur several hours later, especially in the beginning. We started to pull out of the parking lot as I anxiously watched him scratch at his cheeks, rub his eye and start scratching his belly and hip. We pulled to the side once to unbuckle him and examine his torso more closely.

It was a little red, but he was in such good spirits and otherwise seemed okay so we pulled out and continued home watching him closely.

(I actually learned that skin is the last organ to desensitize meaning the skin remembers the allergy long after the rest of the body 'forgets' it. In fact, someone in my OIT group's daughter is now safely consuming two full cashews each day, but the other day she touched one and her entire hand turned bright red covered in hives. She needed steroid cream to combat that reaction. So her intestines, heart and lungs are able to tolerate consumption, yet her skin cannot tolerate the touch---- yet.)

So yeah, the ending was a little bit scarier than other ones- but HOLY FRIGGIN' COW- MY KID JUST ATE ANYWHERE BETWEEN 1/120th to 1/100th of a peanut--- THE DOSE THAT DOCTOR HAD SAID CAN CLOSE HIS THROAT IN SECONDS. ARE YOU KIDDING ME? DO YOU KNOW HOW HUGE THAT IS????
I just updosed to 2.5 milligrams! (1/120th of a peanut.... or as much as 1/100th!)
SO PROUD OF OUR WARRIOR!!!
WTG COBY!!!!


TRUTH BE TOLD...

Truth be told I've been rounding down....

In reality there is anywhere between 250 and 300 mg per peanut... so I've been using the LOWER fraction for my own sanity.  I've been using the 300mg number so I can say Coby's doses are the LEAST possible.

Using the number 300mg it would mean Coby would be getting 1/120th of a peanut today.
But using the 250mg number it would mean Coby is getting the actual feared number of 1/100th peanut today (though the true number may lie somewhere in the middle)

(if you don't know why it is such a feared number it is explained in last night's post)

Coby may actually be ingesting the actual number I have been fearing all these years.

PLEASE think good thoughts! (Especially from 4:30 and on.)


And for another 'truth be told'- each Thursday afternoon when I pack up to go to his appointment, I pack the 'reaction' journal, his carbs and applesauce, his peanut solution, epipens and our phones. (Coby has my old android for games.) I also pack his phone wire and plug.

In reality, since the phone is charged to 100% before leaving it does not need the plug for the 2 and a half or 3 hours we are gone.

But I am too scared NOT to pack the wire. 

I use it as my insurance. I tell myself that as long as I pack the wire all will be okay- but if I choose not to pack the wire ASSUMING he won't need the wire, then Murphy's law will get me good.

Meaning what Stacey?

 If C"V Coby were to have a bad reaction from his updose, we would end up being there an additional six hours (at the least) meaning the wire WOULD have been needed in that case. So if I try to be a hotshot and assume we don't need the wire, "something" would happen to make us end up needing that damn wire.

See how my lovely messed up mind works? ;)

But you do what you gotta do to move forward as you attempt to change your mind-set and change the "WHAT IFS"


"The 'WHAT IF' that trumps all the other 'WHAT IFS'."



1/120th a peanut or 1/100th a peanut? Today is HUGE for us. 
F YOU PEANUT!!!!!

But sending some good thoughts our way at the time of ingestion couldn't hurt....

Wednesday, December 28, 2016

THIS ONE IS A BIGGIE....

Once again it is the night 'before'. Earlier today I had thought I'd blog today but then I wasn't in the mood- I think I was kind of trying to keep my head in the sand about the monumentalness (yes I am inventing words) of tomorrow.

But then Yitz relayed to me a conversation he had just had with Coby which I took as a sign that I must blog. I will relay their conversation verbatim via memes.












My kid is soooo excited about this whole OITthing. He discusses it eagerly with his friends at school. He discusses it with his teachers. He discusses it with his friend's parents. He looks forward to every single dose despite the 2 hours of inactivity that must follow.

Actually truth be told, he was a little sad this past Sunday when he got together with his cousins and had to dose while we were there which meant he couldn't run around. "But last year we all played tag together!" he whined. But he was okay enough about it even then and had fun with them despite not being able to, "I WANT TO GO WILD!"
dreidel dreidel dreidel....

When we hosted a Chanukah get together at our house we timed it to be two hours after dosing so he was able to "GET WILD!" And that he did!

But he did have a blast at all gatherings and has been having a great Chanukah. He was super excited when we went to see the YSTUDS at our shul. He was super super excited when they sang "Hashem Melech" but he was most superest excitedest (yep new word inventions again) when he saw his OIT doctor at the concert too! (Turns out his son in law is one of the YSTUDS)
Dr. Selter!
Honestly this week I'd even get to use one of my "OIT is boring" memes as well but I'm including enough other pictures in this post so I'll save that pic for another time. Coby did pretty good with this week's dosing. Pretty much smooth sailing! Yes still the lip swipes and occasional eye rubs and itchiness but other than that---- okayness (by now you should realize I have my own dictionary!)

After dosing today he did have a bit more itchiness than last night and while I knew I didn't have to be too concerned about it in and of itself, it still concerns me about updosing 2.5 times his current level, tomorrow. (inner voice- "uh oh he's scratching today, does that mean his body isn't comfortable enough with this dose to go up tomorrow?" I gotta find a way to shut up that inner voice of mine! Though sometimes, that inner voice is gut feeling & that power can be used for good as well! ;)

Question: So, what is so monumental about tomorrow's updose?
Answer: This is the closest dose to the 'scary number' his doctor has warned me about.

For years I have had that broken record playing in my head. Years ago his allergist said, "it will take something as small as 1/100th of a peanut to close his throat in seconds."
AND TOMORROW HE IS SUPPOSED TO UPDOSE TO 1/120th OF A PEANUT!

Because of THAT number I had originally dragged my feet about OIT thinking, 'it's impossible! 1/100th of a peanut can kill him in seconds- how can I even consider OIT?' BUT people encouraged me telling me, 'OIT is specifically for those children who have such a severe allergy as those are the children who need it the most." 
And our doctor started him on something MUCH LESS than that dreaded "1/100th" of a peanut- Coby was started on 1/1.2 millionth of a peanut back in October!

But tomorrow.... tomorrow Coby's updose goes from 1/300th to 1/120th of a peanut. This is the closest dose to that 1/100th. And it is so nerve-wracking. (Next updose after tomorrow would be 1/60th).

BUT I understand that the whole point of OIT is to raise his little body's threshold and so I need to trust in the process.

And to find some brightness about tomorrow is that- yes, while the weather report is one big ICK for tomorrow and I HATE driving in that weather---- I won't have to! BOOYA!!!! Yitz is able to work from home this week so he'll be able to take over the driving! Of course I am still going to be there with my Coby. He aint going through this without me but I will have Yitz by my side and I won't have to face that dreaded 1/120th by myself. So thankful for that! (BTW Coby knows nothing about the significance of this number! To him it's just another exciting updose that he seriously LOVES!)

Meanwhile tonight was the last night of Chanukah all 5 of us will be together since Josh is in Teaneck for the night before continuing on to the Poconos tomorrow. (Yep Josh and his friends will be driving through the crap weather to the Poconos and then he'll be traveling to Nicaragua- so I won't run out of things to worry about! Hey, I just take it all upon myself so nobody else in our family has to bother worrying- I do enough for all of us!)

The five of us were together tonight to light the menorah on this 5th night of Chanukah. Each night of Chanukah we add one more flame until all 8 candles are burning bright. While we add one light for each night, all it takes is just a single flame to chase away the darkness. These winter days are dark and dreary and so often this world seems like such a scary place. We need to let those flickering flames in the windows dispel the darkness around us. After all being able to see the lights despite the darkness IS the definition of hope: And hope is the only thing in this world that is stronger than fear. We cannot succumb to our fears. We must continue to believe, pray, hope and move forward. And so that is what our family will do- take a deep breath. Pray, hope, trust and believe. And IYH tomorrow (and all the tomorrows after that) will go smoothly and bring us another step closer to our goal of protecting our Coby's life and giving him his innocence back.

From our family to yours Chag Sameach.


Thursday, December 22, 2016

HELLO MILLIGRAMS!!!!


 

This is crazy! This is nerve-wracking! This is exciting! This is terrifying! Another Thursday, another updose! I won't be using one of my 'OIT is boring" memes because the week wasn't 100% smooth sailing. There was a rash. There was a cold. There was some coughing. It was a bit up and down whether we'd even be able to go in today--- but we were able to and he graduated out of the micrograms and proceeded into the milligrams! That is HUGE!!!!

Once again I was stressed about showing up late (however it is impossible to show up precisely on time since he only gets home at 3:50 and has to pee & change before leaving & we are about a half hour away). We really are a sight to see in the 120 seconds we take from him arriving home from school to us running back out that door! We were seven minutes late to our 4:15 appointment. Too much for my liking, but okay enough.

The doctor checked him out and said we were good to updose!!!!
Good to the last drop!


'I just updosed to 1 milligram- 1/300th of a peanut'! WOOT WOOT!!!!
'I just leveled up' is right!
The hour passed by relatively calmly with Coby being checked every 20 minutes (and obviously if he needed more or 'something' started happening they would have been there in a second). The only 'excitement' was that Coby couldn't manage to keep his tiny tush on the rolie chair with wheels and he kept falling off! At a certain point he decided to just climb up onto the wheel-less furniture!

He also was kept entertained as we decided to watch some videos of Esther's wedding which took place in Israel today. "Oh my goodness mom, is she married now?!" "YES!" "Oh my goodness- does that mean she has a baby now too?" Too cute!!! He was so excited to watch it happening since he vividly remembers their visit this past summer. Though I think part of him is happy it wasn't Shoshana who got married- since he still has his eyes set on her! ;) After all what is an eight or nine year difference? MAZAL TOV YOU GUYS!!!!!

After the hour was up the doctor checked him again (on top of the pre-check, and the 3 checks during the hour) and gave us our new dose! If all goes well he will be going up by MORE than double next week to 2.5 mg!!!
Truth be told that number is really really frightening to me. That number would be the 1/120th of a peanut point. And I cannot get one of his allergist's words out of my head, "It will take something as little as 1/100th of a peanut to have his throat closing in seconds." And we are inching closer and closer to that point... Next updose would be 1/120th and the following updose would be 1/60th. I don't even know what to think about those amounts. I will be all over the place!

We discussed some future issues that are going to be coming up soon. We discussed the zyrtec and environmental allergies. (And if anyone is interested it is another nine updoses before he'd be moving from the liquid to the capsules stage-which is stage 2- of OIT)

BUT it went well today. I didn't get lost driving in either direction, the weather was fine for the drive. And all these little blessings are huge successes in my book!

On the way home driving down route 17 near home we passed by a lot with a fire-engine on it and standing on the top of the fire-engine waving to all was.... SANTA!!!!
Coby proceeded to ask me, "Mom, is that the REAL Santa?!"
Me, "Gee hun, I don't know."
Coby, "Really, is he the real one????"
Me, "I'm Jewish sweets. I never got to meet the real one- but who knows!"

I'm not one to cut down the innocence, the believings, or the magic of childhood.

And what can I say, I believe too!!!!

In Santa. In the tooth-fairy. In Tinker-bell. In it all!

And that my friends is how you never grow up!!!!

Believe that ANYTHING is possible! And my little warrior is doing just that every single dose he takes!

*Four hours after dosing his breathing seemed a bit loud but he is in good spirits. We recorded it for the doctor if needed. Hoping it's just a fluke. But on the brighter side- he was telling me how he was explaining to his friends about updosing and how he will be doubling up from 500 micrograms to 1000 micrograms which is equivalent to 1 milligram--- how's that for math in the 3rd grade! ;)



Monday, December 19, 2016

And another bullet dodged...

This morning we sent the picture of those white dots to his doctor and this afternoon BEFORE dosing I decided to examine his skin and it actually seemed a lot more wide-spread today (before dosing) than yesterday!
what the heck?

We decided to e mail this picture to the doctor as well. Dosed Coby back at his regularly scheduled time of 4:15 and it was basically back to same ol' same ol'- some lip swipes and a bit of scratching but nowhere to the degree of yesterday's!

Our doctor called back, after examining both pictures, and told us she believes it is just eczema. She said at times eating one's allergen can bring out eczema but they don't get concerned about that in terms of a 'reaction'. She simply said to moisturize him and if he's healthy enough we can bring him in Thursday for his next updose. I mean I gotta grab all the times that Coby isn't sick, is tolerating his dose and the weather isn't complete crap and keep moving forward! So pheeew I guess we dodged a bullet! Guess this Thursday is once again looking quite probable! (Stay healthy, mister!!!)

Fifty days and counting!!!

Sunday, December 18, 2016

Small (white) bump(s) on the road????

Since Coby's last updose 3 days ago he had been doing pretty good. Standard stuff- those lip swipes and that stuffy nose he can't kick. But today we may have hit a little snag.

Today was (mostly) all about Chanukah!

This morning Yitz took Coby to Home Depot for the chabad menorah workshop while I stayed home working on Purim costumes. (Yes, I know....) They even had treats for the kids- gelt and sufganiyot.... too bad neither one was safe for our Coby--- maybe next year--- OIT dreaming!




When he got home I got in the proper holiday mentality and we made Chanukah cookies together. He loved every part of it- rolling out the dough- getting flour all over our clothes and faces and kitchen, cutting out the shapes and decorating it. (And yes, he got to have a little taste test as well!)

Since his school was having a Chanukah party today we had to shift his scheduling around- from bath time to dosing time. We actually pushed off his dosing time by nearly two hours. We didn't want to risk dosing him and having him dance at the party bringing on a big reaction so instead we pushed off the dose (while it is best to stick to the same time our doctor said as long as it's within 2 hours it's okay.) 
enjoying pizza and listening to Chanukah music before the entertainment began
As soon as Coby arrived home and assured me his belly was full we dosed him... and watched him. He seemed to be having slightly more difficulty than usual. Yes stuffy nose, yes lip swipes, an occasional eye rub and lots of itching. When I examined him there were no hives (pheeeew) but there were lots of scratch marks on him and a bunch of tiny white bumps.
one of the spots on his body with little white dots
He also said he felt very tired which I learned can be a reaction to a dose as well and you can't let them sleep. But then again, he also had a full day so perhaps he was tired from that, who knows? It's also possible that he was a bit itchier today but maybe those dots are always there??? He does have sensitive skin so maybe I only took more notice of these dots because of his scratching? Last time Coby had a type of rash the doctors believed it to be related to the strep and not the dosing. As far as I know Coby isn't sick though, so what is this about? Could it be that it was 25 hours and 40 minutes since the last dose instead of the usual 24? Or maybe it is all just coincidence.

Yes, obviously we will call the doctor tomorrow and we'll be watching him a bit closer tonight.

One way or another though, somebody's gotta get to Suffern this Thursday because we noticed on his dosing jar that it says, "expires December 27th" so we need a new supply by this weekend anyway. Hopefully all is okay and dosing will go back to being 'boring' and we will be able to updose this Thursday. Otherwise Yitz will be making a detour on his way home from work on Thursday. (but as I'm typing this I'm realizing then that Yitz would have to leave work real early to be home with the new supply for a normal enough dosing time--- aaaack!)

Okay. Breathe. 

Actually surprisingly I'm pretty chill about this. I am not freaking out. And my pulse and blood pressure seem to be remaining at a relatively stable level. Haha- maybe as they check the vitals of the kid every 20 minutes, they need to be checking the vitals of the mom 24/7.

'tis okay. This too shall pass- with this hopefully just being a little 'blip' and nothing more.

49 days in and counting...

Thursday, December 15, 2016

HAPPY UPDOSE DAY!!!! That makes three in a row!!!!


Another Thursday and we did it yet again!!!! That makes it three Thursdays in a row! And honestly it was a crap-shoot---- I wasn't 100% confident that we'd be able to updose.

Coby still cannot kick his cold and he even had a low grade temperature earlier in the week.

I learned that during OIT the body is using so much of its energy fighting its 'enemy' so it is difficult for it to fight other things as well. They are more susceptible to get sick and to have those lingering colds. (And then that sickness/lingering colds can make a reaction more likely because the body is fighting off too many things and at times something gives---- it's a vicious cycle.)

A few days ago Coby went to bed in his heavy flannel pjs and socks wrapped in a blanket and his room was pretty warm. When he woke up his legs felt warm and I thought, 'oh crap!' Thermometer showed 100.3 and he insisted, "I am perfectly fine mom!" I was wondering if maybe he got overheated during the night wrapped up in all those layers. He was acting perfectly fine (other than his cold) but still I was already figuring, 'great he's going to get sick, his temperature is going to climb and we will all miss several days of work and school... dr will make him downdose and then no way are we making it in this Thursday... Yep, my mind was circling that drain.

That afternoon (with no meds in him) his 'temp' was 99.1 meaning we didn't even have to call the doctor about dosing! We already know that anything under 100 is okay(ish) to dose (just watch extra carefully)!
And that was it as far as his 'fever' was concerned!!!!
Nothing else!
It had completely disappeared! How lucky were we!!!! Dodged a bullet there!

But of course--- he still had that cold. Mostly in his nose. A couple of coughs after dosing one evening. A random cough another day. His nose was the biggest culprit and we ended up doubling his flonaze (as per dr instructions) last night to help him breathe.

We weren't 100% confident we'd be able to go in today to updose since many doctors do not updose a child with a cold while others do as long as the lungs are clear and there is no fever. Coby went to bed hopeful that he'd be able to updose today.

I went to bed and was unable to sleep. Apparently insomnia has become my Wednesday night tradition (which I hope I can break)- me being a ball of anxiety worrying about everything under the sun. Will they tell us to come in? Will we go in only to be sent home? Can he updose? If he does, will he react? How the heck am I going to get there on time now that his school started dismissing ten minutes later than they used to and as it was I was only making it in at exactly our appointment time. What if I never fall asleep? How will I drive safely? Will I get lost again? What if the weather is bad? Tick tock tick tock tick tock through the night.

But a few hours of sleep and a whole load of caffeine and I was ready to face the day--- well sorta.

A random unpredicted snowstorm?!!!! And it's sticking?! Are you friggin' kidding me?! No way am I going to drive up there in this weather! ARGH!!!! G-d has a sick sense of humor. Fortunately it was a quick passing storm and I felt my blood pressure resume to its normal level.

The doctor told us to yes come on in today and they will assess Coby.

But by this afternoon as I awaited Coby's carpool arrival I was nearly having a full blown panic attack knowing there was no way in hell we'd get to Suffern in time and the doctor already had given us the latest possible appointment time as it is.
I did many laps around and around my first floor as I waited for him.
When he got home I'm sure we were quite the sight- him running in and ripping off his coat and boots to run to the bathroom and pee- me pulling off his uniform and pulling his other shirt on over his head. He washing his hands as I'm tugging up his jeans. Throwing on our coat and boots and grabbing all our gear and running to the car. Him speed eating through a bagel as I'm begging Waze and my phone battery not to crap out on me! You see, being late is one of my biggest hang ups. It makes me crazy. I am always rushing everyone out of the house- getting to a show or movie a half hour early. The possibility of being even a minute late stresses me out to the max. Other than the health and well-being of my children it is probably my biggest stressor.

Yet somehow we arrived just two minutes late! Even though it was still 'late' it was so much better than I thought it would have been. The traffic gods must have been smiling down on us today.

We parked the car and I was about to rush us across the huge lot and through the building and down the steps (because who has time to wait for the elevator) but I had to keep reminding myself and Coby, 'no more exercise- you are about to updose. Let's just walk in regularly. It's okay!'

Haha- that just reminded me of something that happened earlier this week. Yitz asked Coby, 'do you want to dance?' and he said, "Dad- I can't! I'm about to dose!!!" WTG Cobes! When we were discussing getting together with cousins over Chanukah , he was asking for it NOT to be near dosing time, "Because I wanna get WILD with them!" LOL.


Getting checked out pre-dosing and hoping for the green light
Doubling his dose!




















So they called him into the room and did all the regular stuff: checking peak flow, pulse, blood oxygen, listening to his lungs, looking in his nose. Nose was stuffy- but lungs were clear. And the verdict was in: "I am 100% comfortable updosing him today as long as you are comfortable with that." (and again lol: Coby just read the last sentence over my shoulder and corrected my grammar and had me delete a word. Too cute!) 
We were soooo excited we were given the green light but since he was so congested I brought along the flonaze and the dr. agreed to give him an extra dose of that before giving him his peanut dose to help clear the path. (If a child is congested before dosing it can be very hard to tell what is from the cold and what could be a reaction from the dose.)

AND HE DID FANTASTIC!!!!!

...and a new week begins! Praying for a boring one! If all goes well---- next week we'll be doubling up once again and actually hit the milligrams stage! (1,000 micrograms equals 1 milligram).

Three more updoses and he will (IY"H) finally be past 'day one'. (Kids who get through the entire day of the original day one go home with a 5 milligram dose. We are now 45 days past that day one with still three more updoses to finish that 'day' up. But hey, we are moving in the right direction. And slow and steady wins the race!!!!


 Oh---- and in case anyone is interested I did NOT get lost a single time today!!!!! Progress ;).

Monday, December 12, 2016

One step at a time

Last night I went to bed feeling disheartened (despite OIT going relatively smoothly as of late). Why? I had read about a reaction a child had despite being in OIT maintenance and with no real understanding of how or why.

Yet this morning when I woke up and logged onto that group there was a new post: "Come on graduates- we know that people tend to post only when there are problems or they leave the board completely. For those of us that are still in this group let's help those still on the journey and post here if OIT has been boring with no incidents/reactions for your child."

And one after the other they came out of the woodwork. Weeks after graduation. Months after graduation. Years after graduation. Zero issues. Life changing. Normalcy. Happiness.

I soooo needed to see that when I did and I feel a bit lighter about it today. I still have a bunch of concerns and questions as we get closer to maintenance (which is still forever away anyway), but I need to remind myself to focus on the here and now; on the one step at a time- because all worthwhile journeys can seem too long or too hard or too big a chasm to cross, but when you do it one step at a time, it is very manageable. You need to block out all the what ifs and all that still needs to be done and just focus on the here and now, or maybe ahead just one next step.

A perfect example of this is my journey to Coby. I NEVER IN A MILLION YEARS thought I'd be able to do invitro and go through all those fertility treatments. It seemed impossible. No way in hell. A mountain way too high to climb. The almost daily 6:30AM appointments and blood tests and sonograms. The twice daily shots at home (some for several months), the horrible side effects, the ups and the downs, the procedures. The losses. The roller-coaster.... BUT when we focused on the 'one step at a time'- instead of all that was yet to come, maybe just maybe...'
- let's just go for that first consult- that is manageable.
-let's just go to the shots class- that's manageable.
-let's just get all the necessary tests done quickly- I got this. (and I had them all done within 10 days despite the doctor telling me that some people take months to get it all done.)
-let's just make that phone call and order the meds
-just tonight- just give me the shot tonight- the first is the hardest- let's see if you can do it without passing out.
-Just today. just one day I have to wake up before dawn for just one sonogram. Just one blood test. I'll be home before Josh & Mikey even leave to school and the rest of the day will be normal again.
-Just one more shot tonight.
-Just one more appointment.
Etc etc etc

And before we knew it it was over. By doing one day, one step at a time- it really wasn't so bad. When broken up into days, into hours and sometimes into minutes it was manageable.

And look what I got out of it.


Because by doing it one step at a time chasms can be crossed. The most worthwhile things in life are the ones that are hardest to come by.



We may be on a tough journey that seems endless and scary but this can literally save his life. It will change his life in more ways we probably can even imagine right now. Hopefully all will be okay like for the thousands it has been so far. And for all those lingering questions--- they can be answered as we get closer to that point.

Until (please G-d) Coby is protected enough it is only education that saves lives. Unfortunately though, even despite training people, accidents can and still happen.... but my Coby-bear managed to use his own education about his allergy  to stop just before eating, read and perhaps saved himself what could have been a bad reaction. And I am beyond proud of him!

So what happened today?

His class was having a siyum with kids bringing in treats for the party. In the past, everything from huge bags of nosh was just dumped into a big ziploc for the kids to eat in school. Random pieces of chips, popcorns and cheese puffs obviously had no label once in that bag so Coby would bring it all home and we would take note of what was in there and buy him similar things in which we can find a safe label.

Today Coby wanted to eat in class just like each of his friends. For all the big bags of things (mentioned above) Coby asked his teacher, 'can you please check the ingredients so I know if it's safe for me.' He told me she only checked what he asked her to and the things he didn't want to eat he didn't see her checking. (WHY IS A TRAINED TEACHER NOT AUTOMATICALLY CHECKING ALL LABELS LIKE SUPPOSED TO- I HAVE NO IDEA...)

Also given out to the kids were individual packs of things. Coby was given a miniature pack of pretzels with no ingredients listed on it. A girl told him, "I think they are safe though." My smart Coby knows 'no label no eat' (we've seen pretzels that may contain peanut butter before & there's no such thing as 'i think it's safe' so we don't take the chance).

He was also given an adorable pack of emoji cookies. His friends were eating them and he was so excited to have his too. He told me, "they looked soooo delicious!" But just before he was going to open his bag something stopped him and he decided to read the ingredients himself.
"Made on equipment shared with peanuts...."
The school's policy is that the kids can't even bring food in if it's made in the same FACILITY as peanuts or tree-nuts, let alone the same equipment. AND at least with a facility it can be in a totally separate section of the warehouse- and not even that is allowed.... but EQUIPMENT?! These cookies were actually made on the very same belt that holds peanuts? And it was given out to all 21 children without anyone checking the label.... until some inner voice told Coby he should check it. Thank G-d!  I am so proud of him for stopping, for checking, for not giving into temptation and for putting the whole thing away. He then proceeded to watch the other children around him eat that which is dangerous for him. "But mommy it looked so good!" (I promised to buy Coby an entire box of rainbow cake which is his favorite--- all for him!!!)

I mean, I know an adult should be expected to take care of themselves that way (but even they would need help at times)- but an 8 year old? It's too much pressure on his shoulders! (Yes an e mail was sent to the school)

Reality is people will screw up: both well meaning people and people who don't give a damn.  And it won't always end well. BUT.... if this type of thing were to happen once he finishes OIT, IT WOULDN'T EVEN MATTER!!! Shared facility, shared equipment, 'may contains'- that would all be FINE!!!! He would be safe. We can't count on anyone to keep him safe. And as smart and as vigilant as Coby is, he won't be able to keep himself safe at all times either. He can't control the particles in the air or the door knob that is touched. I am sooooo proud of my boy.... but what does this teach him? That those who are supposed to help keep him safe don't?! It is always nerve-wracking to send him to school or anywhere for that matter just in case... But for school though my biggest concerns would be 'what if there's a sub who doesn't know?'... But this wasn't a sub!!!! They KNOW his story and were TRAINED and STILL this happens?

Last night I went to bed so scared but today was eye opening with those out of the blue the postings specifically about all the "boring journeys" with no incidents, followed by my false sense of safety for Coby smacking me in the face today.

I am soooo proud of my boy. (I cannot say that enough!!!) And as scared as I am about OIT--- I look forward to every single updose because every fraction of a fraction his little body can learn to tolerate makes this world that much safer for him to live in.

One step at a time...





Sunday, December 11, 2016

BUT

I am not sure why I am writing. Nothing substantial happened- thank goodness. So far he is tolerating his latest updose! Which is great- I know.... BUT

Sometimes it's so hard to squelch my fears all the way down and to shut up all the "what ifs". As we inch closer and closer to the 1/100th of a peanut date I feel my fears growing.

Doctors have said in the past that while Coby can react to any amount of his allergen, they were specific about the amount 1/100th. "Something as small as 1/100th of a peanut can close his throat in seconds."

If we are able to go in every week for his updose (if it goes well, and no illnesses) we are just 2 and a half weeks away from that point.

This Thursday would be 1/600th- his last microgram updose (I think.)
Then 1/250th. (a milligram!)
Then 1/100th. That 1/100th that I was told can close his throat....

And it terrifies me.

This whole process terrifies me. The future terrifies me.


Sometimes it feels like I'm just going through the motions; planting on that smile as I push my fears all the way down. You remember being a kid and having a kick-board in the pool and trying to push it to the bottom of the pool and stand on it and inevitably it would come shooting right out of the pool? THAT is my fear. Trying to hold it down deep in that pool and not let it burst up.

BUT

Someone who is already at 6 peanuts had a reaction out of the blue. She had safe frozen yogurt and was sitting in her car watching Christmas lights- and now she's in the hospital fighting an anaphylactic reaction- despite being at the 6 peanut point. Her mom doesn't know why. It was hours after dosing and she wasn't exercising- she was sitting in her car. (being within the first hour of dosing or exercising within 2 hours is highest likelihood of reaction- which she had none of.) I mean, we all know OIT doesn't guarantee 100% safety- after all your child is still allergic. What it does guarantee is a much more normal life and more safety than he otherwise would have.

Most parents try to get OIT done before their child hits the tween years. That is when their child begins to grow up and away from his parent and his parent no longer has control. In a sense it is easier when they are younger and you have more control... but once they begin to make more and more of their own decisions.... friends' bar mitzvahs, hang out at the mall. Going out to eat and not wanting to call attention to himself so he eats and tries to hide it (There actually was a teen who died from an anaphylactic reaction in a mall when she hid in a bathroom stall). College. Room-mates eating who knows what. Airplanes. Vacations. That first kiss. (And yes someone has died from kissing her boyfriend who had eaten peanut butter 3 HOURS earlier.)

THIS is why we do OIT because it is the most we can do to protect our child as we get ready to send him out into the world. He'll be safer. No more worries of touch or airborne reactions- at least THAT part will be settled. Freedom. Peanut dust in the airplane couldn't kill. A kiss could no longer kill.

BUT BUT BUT BUT BUT.
It is so scary.
And I'm so terrified.
But I HAVE to do this. right?
Of course I do.
It's the ONLY thing I can do to keep him as safe as he possibly can be.
BUT BUT BUT BUT BUT.
but i have to try
there are thousands and thousands of success stories who did not (yet??) have reactions in maintenance and during all those years they were free to enjoy their life to the fullest.
This can save his life!
So I HAVE to do this.

BUT
Somedays it gets very hard to silence the fear.

Friday, December 9, 2016

OIT AND FEAR

PREFACE: THIS IS NOT MY POST!!! (BUT WAS GIVEN PERMISSION TO SHARE). THIS IS A LOOOONG POST CLEARLY STATING THE BENEFITS AND THE RISKS. I AM POSTING IT SIMPLY FOR THOSE WHO MAY WANT TO EXPLORE OIT FOR THEIR OWN CHILD OR THOSE WHO ARE INTERESTED IN LEARNING MORE ABOUT IT. THIS HAS NOTHING TO DO SPECIFICALLY WITH COBY'S JOURNEY BUT I AM POSTING IT BECAUSE SOME EXPRESSED INTEREST ANYWAY AND OTHERS MAY BE CONSIDERING OIT FOR THEIR OWN FAMILY. THIS IS A VERY WELL WRITTEN POST. BETTER THAN ANYTHING I COULD HAVE WRITTEN:



OIT & EPI FEAR: It's the #1 fear we hear over and over. Unable to start or explore OIT because "I've seen a lot of posts about having to use the Epi in treatment." So here's a post and a graphic to help you reframe that fear and think about it differently. Because to hold your child back from a treatment with 80-90% success rate because of YOUR FEAR isn't fair to them. It is something you can work on--either through ideas in this post or with a trained professional. Yes, some of you parents should get a therapist to work through your issues with food allergies and in treating them. There is no shame in trying to set yourself free.
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1) PLAYING THE ODDS: OIT WORKS
Imagine having a conversation with your 25 year-old child and explaining you didn't pursue OIT for them because you were afraid. What would their response be? How would their childhood have been different? I couldn't risk that, knowing the very high odds that my daughter's life would be dramatically improved. With OIT we are playing the odds.
Here's the way I think about "trying it" if you've come this far. The studies and practice statistics are remarkably consistent with the 80-95% number. When I looked at my daughter I could not imagine sentencing her to an FA life if she were in the lucky 80%. How would I explain it to her? Sorry, I was too scared to try? If she's in the 5-20% who fail, well, we stop and we have some scary and perhaps unpleasant times but we can stop. I won't regret it.
So your child is already in one camp or the other: the 80% it works for or the 20%. You just don't have any way to know which one. You're just waiting to see the lottery ticket.
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2) STRICT AVOIDANCE AS A TREATMENT IS A FAILURE: ACCEPT IT
Too many people reject OIT as being too dangerous--as if they were evaluating it from a perfectly safe place instead of sitting on a powder keg. Folks, you are driving without a seat belt and airbags and worrying if adding those to the car will cause injuries in a car crash!
The big difference with OIT parents is that we've accepted the failure of "strict avoidance" to protect our kids. And we aren't willing to live a frightened, hyper-alert, always-prepared way of life trying to chase something we have no control over. Peanuts and trace residue are everywhere. People are idiots. Accidents happen and mistakes are made.
If you want to scare yourself, do it with the risks of the choice of "no treatment" Because that is a choice--to accept the current state or risk as an acceptable treatment. Without OIT, The American College of Allergy, Asthma and Immunology (ACAAI) says nearly 15% of patients per year have accidential reactions. Stanford says approximately 25% will have a near-fatal anaphylactic reaction at some point in their lives. So that's your baseline. 200,000 ER visits a year and millions of reactions that never reach a hosptial. Millions. As a friend of mine said, how many photos every week do we need to see in the No Nuts Moms Group of hives, rashes and kids in the ER to accept that strict avoidance has a high failure rate? Saying "no" to OIT means you are choosing this course of "treatment." If you were just starting out, is that what you would choose?
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3) EPI PENS WILL BE NEEDED WITH OR WITHOUT TREATMENT
It's a hard thing any way we look at it. We have allergic kids who are staying allergic. ANA is always gonna be there along with our Epis. With or without any treatment it's there. We have no way of truly comparing our child's risk of ANA on any given day. So choose to accept that both paths have a risk: "Strict Avoidance" has an X% risk, and OIT has a Y% risk. You can make yourself crazy trying to compare X and Y (and many of you do). Better to accept and view the Epipen as a tool to manage it. Better to decide that maybe X=Y since we can't know and not think of the EpiPen as the deciding factor in doing OIT or not.
Some do have to use Epi during OIT. It is a risk, and a reality. If it were closer to zero RISK, OIT would likely be more widespread and done by more doctors. Our docs that do this are the best--they really understand how to minimize the risks. When we see ANA here--and you can see old posts, most of the time the parent can figure out a reason for it--not following "the rules" strictly, or a viral illness etc. But we do see random unexplained incidences.
So yes, again ACCEPT IT that you will see each and every month that a few people have to use Epi. Stop being shocked and amazed and paralyzed by it. Hundreds have left the group and gone happily on to live their lives. When we "see" Epi events we assume everyone is having them. Everyone! The rule of support groups is that we see and hear what the problems are.
No one can estimate a percentage of risk whether your child will have ANA with or without OIT. That's the calculation those of us who proceed did in our heads. For me, even if it was equal--5% or 15% with or without OIT, who knows?--the scale ripped toward OIT because it allows us to live normally and participate fully in life. To get rid of the fear of food, the social exclusion, the emotional stress and worry. We will always pay attention and carry Epi but she gets to have a life and SEE every day when she eats her peanuts that she is safe.
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4) YOUR QUALITY OF LIFE AS A FOOD ALLERGIC FAMILY ISN'T GREAT NOW.
You can argue this one....and if you have a child with no social, emotional or pyschological issues with their FA life, then you don't need OIT. If their teen years won't be faced with many challenges due to the FA's, then you don't need OIT. Leave the group and go live a happy life!
The studies will prove you wrong in how dramatically OIT transforms life not just for the patient but for the whole family, because the quality of life just isn't great with food allergies. Again, those of us who made the choice to do OIT accepted this fact and weren't willing to compromise on it further. We want normal life. 81% of us just want to be safe from cross-contamination and perhaps eat something with peanut in it. We want peace of mind.
You have to decide if the risks concern you since we live with risk of death everyday anyway. You might think you are switching one set of risks for another. Yet by switching these risks we actually have an excellent chance of lifelong freedom. Because the equation is:
Poor quality of life = High daily fear + daily risk of contact / reaction + social exclusion
High quality of life = Low daily fear + daily risk of contact /reaction + social inclusion
When we are able to know we have some tolerance for peanut, the daily fear goes away, pretty much to zero. We therefore can fully participate in life: parties, eating out, traveling, and yes, kissing! The second part of the equation doesn't go to zero, we know we might still have a reaction but the risk goes much lower. This is why OIT is a miracle treatment and the quality of life studies prove it.
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5) YOU WILL STILL HAVE EPI/ANA FEAR BUT IT WILL BE REPLACED WITH JOY FROM NORMAL LIFE
This is the graphic below. On the left, your fear/worry about using the EPi is a huge presence in your life. Your focus is around staying safe and managing it as best you can. There are costs of this way of life--financial, emotional, social, burnout...it's endless. And still the Epi/ANA fear is there. It gets worse as they age--and they will--and spend more time away from you, OR they become socially isolated because they can't go places and do things.
Here's what happens after OIT. PAY ATTENTION!!!!!! ------> You still have the fear. See? It's still there in the diagram on the right. But it SHRINKS. It gets moved out of the way because the rest of your life is filled with good things: social events, shopping is easier, less stress with family, your child can go places and give you a break, you can travel, eat out. I am living this NOW after a 2 year "stint" in the food allergy world, and I can tell you that Epi/ANA fear shrinking just happens over time. I'm still ready, probably MORE ready than before to use Epi if needed, but I feel I would be very calm if it were to happen. Because the rest of my life is moving back into balance. When you become empowered you can deal with a little stress.
The reason we treat is that we want to LIVE LIFE. They get released from the social and emotional burdens. The Food Fear. So while we don't ever get totally free of that little nagging ANA worry, when we see them eat the peanut everyday with no issues there is such a physical and psychological sense of relief it's hard to explain. I didn't expect that but when we got to 1 peanut and I saw her EAT IT it was an unexpected sense of relief.
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6) IF OIT DOESN'T WORK, YOU STOP
We aren't removing parts of their brains, or limbs, or loading them with drugs or chemicals, or x-ray beams....permanent, scary damage....you can simply...stop. If it doesn't work, if anxiety is an issue, if GI symptoms are too much, if there's any pain or problems...you can stop. That day. Just stop. No weaning or complications, just stop. The doctors say they just return to normal. You could decide your own min/max if you want: "3 pukes and you're out!" or whatever line you wish to draw.
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7) OIT HELPS YOU VIEW THE EPI AS A TOOL
I am always amazed at how OIT refines skills at giving the Epi without hesitation and the miracle of the drug. I know it freaks everyone out but I now have an opposite feeling. I feel calm and prepared should she suddenly have one of these bizarre episodes. Where I felt helpless before OIT, the "halo effect" of the joy of eating CC and returning to normal life has made the fear of a possible EPI event a tiny little compartment in my brain.
If you've been paralyzed by seeing Epi events happen in the OIT group-- I urge you to go back and look closely at the old posts. What happens? Did they have a theory as to the cause of the ANA? Usually they do. In every case, do the parents handle it calmly and carefully? Isn't it different than the other food allergy group posts you read, full of panic, and often guilt? Most importantly, did the family quit OIT? Why or why not?
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OLD COMMENT FROM LISEETSA:
"And the results, while we consider it a miracle, it's science and biology. Retraining the body to accept something that previously viewed it as danger.
We can turn any conversation into another topic based on fear, which we all have, and we can find an "excuse" or real reason not to do anything. But you don't want to be stuck in an intersection afraid to go either way.
First, would be to make a checklist of reasonable fears-- "PAIN" being the most actual thing that we've seen related to OIT. So then search it and see what others have said about it. And understand, no one wants to create pain in their child-- we are trying to prevent it from happening ever again if possible. Trust me-- you would DO ALMOST ANYTHING WITHIN REASON to make sure that never happened again.
There will always be a voice in your head saying, "That's great but what if..." when you read celebratory stories. And anyone of us could be the tiny percentage that cannot be helped at this point-- but I'd rather TRY then never know and having something worse happen.
Have faith that if you are HERE in this group, we share the same fears and act upon them differently. To adopt new thinking and new habits takes more for some than others. My grandmother told me decades ago, "In a family this big, if you are going to let everthing anyone says to you ruin your day, you are in for a world of hurt." And I was-- because they were genuinely mean, controlling people. No one is forcing anyone here to do anything. We are sharing our FREEDOM stories and answering as many questions for you as we can. No one is getting paid. Everyone is dedicating their time to helping so everyone can be in a better place."
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QUOTES FROM PARENTS
"That's what I think of is the future..when I lose control of every situation my son is in. He is going in 5th grade and I have gotten a taste this summer. .going to movies with friends and their families, going to water parks with out me, more sleepovers. So far I know the families very good and they all are okay with his food allergies, but it may not be this way forever. He is going to want to go more and more places without me."
"I am helpless doing nothing, so it's time to take control and protect my little boy!"
"Avoidance has not been enough to keep my kids safe from an anaphylactic reaction. We have experienced contact reactions at gymnastics, airborne reactions at the little league field and cross contamination reactions on vacation and at a restaurant. For us, OIT is the only choice."
"Eleven years running and next to no reactions. I can handle my dd's allergies fine. Until. Until the airborne reaction to a bag of peanuts in a conference-sized room. (Whaaat?!?) Until we want to get on a plane without having a nervous breakdown. Until she wants to go away to college. Until her 1st kiss. That airborne reaction a few months ago made me realize, by *not* choosing a treatment I made a choice. I say this without judgement of anyone's choice (or non-choice) of treatment. I say it because I never realized my *non-choice* had consequences....worsening allergies and new allergies (tn)."
"...My daughter like your son has lived a very "normal " life. She's had a few hives or tummy issues but that's it. We have been able to keep her in a mini bubble but she's growing up. I want her to kiss freely (maybe:), travel far, try new adventures all things that are limited because of her food allergies. We are doing OIT for her future so she can dream bigger and live freely."
"....I felt just like you! My son is 14 and although his two Ana reactions were at 4yrs old we have avoided peanuts and tree nuts and he lived a pretty normal life besides the avoidances. BUT when he turned 13 I started to get so much anxiety bc of him always wanting to hang out with friends, weekends away, sleepovers and of course GIRLS! It's sooooo different as the get older and they have to start making their own choices without you being there to keep them straight. He just graduated OIT and my anxiety for his future has greatly decreased. Like most parents I worry about long term side affects but I finally came to the conclusion that for us the pros outweighed the cons. I wanted to finish before he started high school in Sept. He still doesn't like peanuts but he has already felt the freedoms that come along with eating them daily so he pushes through. I worry no matter what but it's definitely a different kind of worry. On a side note he did have one Ana reaction when he got to 4 peanuts. We think seasonal allergies played a part but other than that fairly smooth. I'm almost thankful for the reaction bc he knows exactly how it feels now and would react quickly. He doesn't remember his reactions from 10 years ago. He also was very afraid of having to be given the epi but after he received it he actually laughed and said that was it? So I know of he needed to self administer he could do it now. All in all OIT was a good experience and we received the outcome that we were hoping for."
"While it took YEARS to go from determining we would find a treatment for our daughter to beginning a clinical trial, the moment we truly understood that keeping her safe went beyond controlling what she put in her mouth (and acknowledging that it is IMPOSSIBLE to completely control particles in the air and trace residue left behind). For those who aren't sure what to do, I honestly believe there will be a moment or series of moments that lead to clarity about what is best for your child, and your family. While Susan's journey has been astronomically more difficult than we ever could have imagined, she IS safer now than she was (she tolerates her peanut dose far more days than not and in the case of anaphylaxis, she knows what to do). We want something more, but for now, this is success."
"I never had to Epi my daughter until OIT, but you know what? I was so tired of waiting for THAT reaction to happen to her. We'd had close calls (benadryl. steroids, inhalers) but never Epi (and we didn't stop her from eating CC or made in a factory, we never stopped travelling around the world and eating in different restaurants). THAT day was going to happen (and almost did right before OIT started - someone almost gave my daughter a granola bar with peanuts) and I knew that it could be really, really bad. OIT puts me (and her and Dr B) in control. I have confidence that even through the rough patches, OIT works. I'd do it again in a heartbeat."
"...we have learned a LOT during our long journey so far with OIT. One is that my daughter has absolutely NO desire to continue a life where she lives in fear daily of nuts. And she is willing to go to the end of the earth and back to overcome that. Because she knows it is a small journey for a huge reward. And she is tired of a life filled with avoidance and fear. Second, the experiences we have had have been educational and empowering to her. It haven't been easy, I won't lie. But, she had anaphylaxis recently and this is what happened. She came to me and said, "Mom, I'm having a reaction." She had absolutely no signs of any kind of a reaction. FIVE minutes later, it hit. Full blown. And neither of us was stressed, fearful or concerned. We just gave her meds and took care of her. I see this as a HUGE win. She can now tell immediately, before there are outward symptoms, that she is having a problem. She knows how to take care of it and treat it before it is bad. We ALWAYS have her meds, and we are not nearly as fearful as before. We are SOO much better prepared to handle things now. And, I am confident, that we won't NEED that skill her whole life. Just for a short time."