AM I UP FOR THE FIGHT?

Our initial consult was supposed to be today but got cancelled. Our consult with a different doctor was supposed to be November 4th but they contacted me and told me if we were willing to drive a bit further we can have the consult done at an earlier date at their office. We are now scheduled for October 20th with the big first appointment probably being at the end of October.

Every day I spend hours scouring the facebook groups and blogs and researching... 

Breathe in. Breathe out.

I am feeling so conflicted about all this. This journey is going to be so difficult and with no guarantees since it is not a cure. It feels like there is no rhyme or reason for what happens among the way. Some kids go into anaphylaxis even in the maintenance stage--- so how do I know that 2 years from now his immune system won’t say ‘enough is enough’ and react- badly? There is no direct road to do this. On day one they try to get about a dozen doses into the kid- some kids are able to get through all of them (& then go up one dose every week or two), while other kids can’t even get through the first 1/1,000,000 of a peanut and it takes them three entire months to do what others have done in one day. Yet slow and steady wins the race. 

How come I am reading that some kids tolerate the updose at the doctor’s office, but then three days later at home they have a bad reaction to that same dose? How come some kids react one hour into it while others 10 hours into it? How come some kids graduate the entire OIT process and are eating their maintenance dose of a few peanuts a day- and THEN boom they react? Yet they GRADUATED already, wth????

How can I come to terms that Coby’s regular allergy plan says to epipen and hospital him at any known peanut ingestion- yet now I’m going to have to (somewhat) willingly feed him these peanuts and just sit back and watch? 

And then there’s the issue if your kid gets sick--- some doctors say continue the dose, other doctors say cut the dose in half, other doctors say DO NOT DOSE THE CHILD because the same way they shouldn’t take a hot bath within a couple of hours of dosing since heat can bring on anaphylaxis, it’s the same thing with fever---- BUT if you don’t dose that day you can be back at square one. So does that mean that if we are 4 months into it and then he gets sick, boom we are back to day one? How do I know what to do if he has a simple cold, or if he has a fever? Some kids aren't even dosed with a regular cold.

Every doctor seems to say something different. How come some doctors do bloodwork throughout the process followed by a food challenge in the end? How come others don’t? How come if vomiting occurs too many times some doctors say the kid needs endoscopy to make sure the stomach is not rubbed raw and he’s not developing the disease of the esophagus, yet other doctors don’t? How will I know if he develops a single hive or two or if he starts vomiting- if it’s a ‘side effect’ that is okay (enough), or if it’s quickly progressing to anaphylaxis where every second counts. 

Some parents admit to having even more fear during OIT than before it since they are dosing their child EVERY SINGLE DAY with what has the potential of being lethal to them. 

AACCKCKCKCKCKKKKK!!!!!

Part of my personality is very OCDish (no I haven’t been diagnosed ;)- I need a set of rules and I follow them step by step.... I need a plan. Whenever we go anywhere we have a set itinerary. We travel to disneyworld with a touring plan. I plan things out months in advance- Purim, parties, trips. EVERYTHING. I need to feel like I have some semblance of control.... but this?! This is so out of my control without any true exact rules. This is pulling me so far out of my comfort zone I am in another galaxy.

And I am reading that despite all this and despite the fears and the what ifs, and despite the chances of still having a reaction out of the blue- that the kids who ‘graduate’ say their life is so much better. Because before OIT they had to be fearful of:

-Labeling mistakes 

-No labels 

-Products reformulated 

-Kitchen errors 

-Dirty kitchens 

-People errors 

-Cross-contact 

-Cross-contamination 

-Re-used dishes and utensils 

-Restaurant lack of training 

-Homemade items 

-Allergen residue 

-Airborne proteins 

-Reaction from stressed immune system 

-Random reaction

And after OIT they ‘only’ have to be fearful of:

- reaction from stressed immune system 

- random reaction---- but most of life is ‘normal’ again.

Yet OIT is NOT a cure and they can still have reactions. OIT desensitization saturates/occupies/blocks the IgE receptor sites that normally if triggered/activated by eating the allergen would set off the anaphylactic response. You need a certain amount to do this 'saturation' and since they aren't tolerant yet it needs to be replenished by eating it again and again and reminding the receptors it's a friendly substance.

It bothers me when people think ‘Do this OIT thing & poof- done. Cured. Easy Peezy.’ This treatment is NOT a cure, and this treatment is HELL and my child WILL react several times during this treatment and yes thank G-d if successful it will provide him with an almost normal life, but he CAN still have a random reaction including anaphylaxis though his risks are lowered. 

And I need to give that to him NOW before he hits the pre-teens/the age where kids start taking more risks. But we still need that cure- where no random reactions will occur, where he won’t need to stay on a maintenance dose or have the full allergy come back with a vengeance, where we no longer have to worry each and every day. But a cure can still be many years away and I need to do what I can to protect my kid and keep him as safe as possible…. Which means hurting my kid…

Breathe in, breathe out.

I am the mom who came so close to grabbing my newborn baby and running him out of his own bris upon seeing the mohel enter the room. I felt like an abuser by ‘willingly’ giving him to the mohel to be hurt. I never hit my kid, I never lay a hand on my child and yet with this I. AM. GOING. TO. BE. HURTING. MY. CHILD. And it’s breaking my heart... 

But what if this is what gives him his life back? What if this saves his life? If I don't do this how do I know that sometime in the future he wouldn’t end up having a bad reaction from something cross contaminated that this OIT will protect him from....  And I try to tell myself that maybe for every scary story out there of a family going through OIT- there can be dozens of other kids and parents out there who sailed relatively smoothly through this and are enjoying life (for the most part) again.

Nelson Mandella said, “May your choices reflect your hopes and not your fears.” I believe that this is a combination of both. So fearful, yet so hopeful… 14 days til the consult and counting...