Tuesday, July 30, 2013

A good book and good friends and family

July 30, 2013
Day 64

Things have calmed down from some of the previous posts (although there will always be chaos in our lives, I think that's just the normal we have to adjust to!).  We took a vacation, had three birthdays, a pig pickin, scuba, softball, a double ear infection (mine!), started elementary school again (Erin), and lots of fun with friends.

God bless the grandparents (all 4!) for watching the kids and for dealing with the allergy scariness that was going on right as we had to leave town.  It helps to have family that will take good care of the kids (and the kids are getting easier as they get older, the no diapers thing has made travel SO MUCH EASIER) :)  P got a cool new book about food allergies from the grandparents which has generated a TON of questions and talk with the kids about allergies, so we are big fans.  If you have kids with food allergies, or friends with them, check out: The Bugabees, Friends With Food Allergies.  I think the preschool and elementary school may be getting copies of this too.

In allergy news, we upped the dose last week to 75mg, which is starting to look like a pretty decent amount of nut protein.  (no longer a wisp of powder in the cup).  That went well, and although he's a bit snotty this week (which can be a concern for a higher risk of reaction), he's doing well.  Zyrtec and his normal asthma meds seem to be keeping things under control.

The only day that I should have been really stressed was the pig picking, but thanks to a lot of good friends, some large allergy stickers/allergy bracelets, and some serious talks with the kids about not eating without mom and dad - we had no issues and I was way more relaxed than I usually get to be.  I hate big parties sometimes with lots of strangers and food.  It used to feel like all I did was follow him around like a puppy trying to protect him.  But times change, kids grow up, and friends step up (and tell us that they are watching too).  BTW, have I mentioned I love you guys?  The pig, the company, the food, the friends - awesome.  What more can we ask for?  We have a lot of great things in our lives.

If anyone has other good book recommendations for the kids about allergies, let me know - I see some options out there, but haven't read any of the others.

Thanks for following us on this journey.  Some other family and friends may soon be joining us on this roller coaster (with different food allergies), and I'm sure we will all have our times to be scared together.   But we can also celebrate DAY 64!!

Thursday, July 11, 2013

2x4 reminders that we aren't in control

Day 44/45 
July 10-11, 2013

So... right about the time that we get big heads and think that we have everything under control in our lives (which admittedly is rare!), something or someone comes along with a 2x4 board and whacks us in the head.  It might or might not be a necessary reminder that we are not in control.  Saying that; everyone is fine; it's just been a nerve wracking two days.  Remember Tuesday that P was complaining about a sore throat during his up-dose appointment?  Well cue Wednesday morning, and he takes his 50mg dose at home and off he and Dad go to speech therapy.  I get a very nervous call from Daniel at about 9am - Patrick is saying he's going to throw up, and that his tummy hurts and his throat hurts.  Daniel and I both race home trying to get there before he gets sick.  We don't make it quite that far, Patrick throws up in a bag in the car.  Hooray for an age where there is some control/ability to aim!!  We'll take our silver linings wherever we can get them thank you very much!  So we both get home and Daniel calls the allergist who calls us several times over the next hour to discuss symptoms and what to do.  (This happened within the two hour window when the dose was given).  Patrick has a notoriously sensitive stomach and gags easily, so snot related vomit is not an unusual thing in our house, but he didn't seem at all snotty or sick otherwise.  We can't always tell if something is just snot or if he's sick, or in this case if it was allergen related.

There is no fear like staring down your child worrying that they might suddenly have breathing problems (again).  We've been down this road before both with allergy exposure and asthma, and it's heart stopping as a parent to watch them struggle to just BREATHE.  So all was well, but it was an adrenaline high nervous couple of hours.  Patrick had no idea, we tend to get in this eerily calm mode of do what must be done, no nonsense, no emotion, don't show fear…  My brain only freaks out hours later when everything is fine.

The good news is that he had no other symptoms other than upset stomach and sore throat.  He could swallow (we checked), and seemed happy playing with toys/electronics but complained now and then.  This went on until lunchtime when he finally said he was feeling better.  Given what he ate for lunch, he clearly felt a LOT better.  He ate a full size sandwich and asked for more food.  We agreed with the allergist that Thursday's dose needed to happen in the office so they could keep an eye on him in case this happens again.  

I didn't realize how frazzled I was until I took a break to go to the pet store and drove past it multiple times, and then two different friends told me to stop trying to work for a while and take a break to calm my brain.  Sometimes we all need reminders to stop spinning aimlessly and sit still so we can then process what's happened and let go.

Now it's Thursday morning, and we're back in the allergist's office going stir crazy.  The doc checked out Patrick and he seems totally fine, and then we gave him his dose and we're waiting out the two hour window in the office.  The nurse stopped in to tell me to try to take these in stride, as this happens with every patient doing desensitization at some point.  I'm not sure why but it was reassuring and heartfelt, maybe just another human being saying I know it's scary, but it's ok.  This has been a nutty week, but we will keep faith that we are doing the right thing and that we (as a village) can keep him safe and make this work.  It sounds trivial, but it was a scary day yesterday.  Thanks for the good folks who lent an ear/hug/sanity check/prayer!

Tuesday, July 9, 2013

It takes a village...

Day 43 - 50mg
Well, we've doubled the dose for the last time - and all seems to be going well.  A few more hours at the allergist and off we'll go again.  The last week has been chaotic and fun - full of travel and food and great friends and extended family.  Some mayhem goes with that though - everyone cooking for our crew needed to know to check ingredients (or check with us), which worked out easily enough.  We went to a family party on the 4th to watch fireworks by the water and had to be extra careful to keep Patrick out of the house, as there were lots of desserts/foods with walnuts and pecans, but considering everyone was out on the porch, it wasn't bad.  He was thrilled that he got to see firetrucks, an ambulance, and fireworks.  Every time he asked for food we broke out the stash in our cooler (ELF snickerdoodle cookies, juice boxes, squeeze applesauces, squeeze yogurts, and our safe "granola" bars).  It also helps to have friends who are aware enough to stop him from going in the house without an adult.  Love you guys!!  It was great to get some time that felt like we could relax, and usually parties are not one of those times, so thanks to everyone who watches out for him!  We had a grand time fishing, boating, swimming, playing frisbee, and just general silliness in the sun and water.  The food was fantastic (everyone took a turn cooking), and it was just generally awesome to take a break from the mayhem of home.  Staying organized certainly matters - we dragged a cooler with epinephrine all over the place and out to the sandbar repeatedly and just made sure it stayed in the shade or close to some cool packs.  We kept a steady supply of fresh snacks (veggies, ranch, hummus, guac, whole fruits, and a few boxed items) around and it made it easy to stave off hungry kids or risky foods.  Couldn't have asked for a more fun crew of friends / family.

The last day was a bit of a rush to get out the door, ended up swinging by the beach for one last dip in the ocean (Patrick didn't mind)!  Traffic was nasty getting towards home, so we ended up having to go straight to the softball game via back roads.  This is one of those times it's a good thing I'm an overprepared mom - I scrounged food, water, clothes, and enough gear to play out of what was in the car.  (Thankfully I had my glove with me!)  Patrick got to meet a whole new crew of friends and spent the whole game cooling us off with a squirt gun!  It still feels weird to leave him alone with anyone (even for a moment) that doesn't know his history, but folks were great with him.  I admit I told him not to eat anything I didn't give him every time I left the dugout. :)  He could have cared less, he was happy to keep filling up his squirt gun and shooting us with it.  So thanks again to yet another set of friends for helping to both entertain him and keep him safe.  It takes a village right?

This is getting easier, more normal, and while we tell his story a million times - it's a good thing.  More folks are surprised by the intensity of his past reactions, and that makes them rethink what they know about food allergies.  We are learning new things all the time too.  The latest FARE newsletter talks about various methods of desensitization and that people shouldn't be doing this outside clinical trials.  :)    Clearly we disagree there, but at least our doc has a long history of those exact clinical trials and we feel totally safe in his care or we wouldn't be doing this.

He did scare me a bit at the end of the appointment - he was saying his throat hurt, but he was grinning and acting goofy.  We stayed longer and kept asking him questions and trying not to encourage him if he was being silly.  (He has never false reported before).  He seemed fine and eventually said he was fine.  (We also gave him water and a squeeze applesauce and he was drinking and swallowing just fine).  Interesting.   If he's going to start saying he's having problems when he's not this could get complicated...

So thanks to our village - you guys rock!