And then there was joy...

Day 32
We're learning bit by bit how this works (and what we've done wrong like pre-dosing with albuterol last week).  But as stressful as this has been (especially in the beginning), there has also been a gradual building up of hope and a joy that we're doing something to protect our little guy, long before he has the ability to do it for himself.

Some awesome things this week that are related to food allergies:

• No reactions to the new higher dose (25mg) - yay!
• Big sister ordered ice cream for herself and her brother at ChickFilA (by herself)
• She grilled the guy at the counter to find out if the ice cream cone was safe (and then brought me a list of the ingredients)  - she was super proud or herself!  (Don't tell her we already knew they were safe, it was a really good experience for her!)
• The peanut patch article from the UK has thrilled a lot of peanut allergy parent friends.  It's great to see hope in ourselves and other people.
• Random friends have asked to use the auvi-Q and epi pen trainers to make sure they have a clue how to use one if it's ever needed for an adult or child.  (people with no food allergies).  This touched my heart because they want to protect our kids and other friends.  I had no idea how many people I knew who do have an allergy of some sort until this year.
• We're figuring out how to keep the epinephrine for outdoor summer activities - this is a PITA but can be managed.  (cool packs, but not ice packs).  It can't be too hot OR too cold.  Big Pharma friends please come up with some sort of seriously shelf stable epinephrine!  We put the cool pack around the injectors and then put that in a waterproof bag, in the very top of a cooler or outside pouch and keep it in the shade.  At least we found a way to make it work. :)  And that means more times fishing, or on boats, in the ocean, at the beach, softball games, etc... and outside time is good!

So be grateful for the joyful moments.  Revel in them.  Share them.  We spend enough time scared, let it go and soak in the good moments.

Day 29 - 25mg

June 25th, 2013

Back to the allergist today (or as P says "the applesauce doctor").  The puffy eyes and face from the cold last week are fading out slowly, which is a relief.  The new higher dose of the walnut protein is 25mg (for the next two weeks).  I can't believe we're at a month already of our desensitization program, and the dose is more than 4x where we began.

The doc told me that if we ever again have concerns about his asthma (last week) - not to dose him but to call them for a sanity check.  If he IS having an asthma flare, he needs to not take a dose then.  (The risk of causing breathing problems is too great).  Good to know.  He never wheezed last week but he had a nasty cold for a bit there and a puffy face.

In the news - there is always new research and articles on different trials - this one is pretty neat for those with peanut allergies.  A patch would be pretty easy to cope with for desensitization! Peanut patch could save lives.  A neighbor sent that over and I thought I'd pass it on.  I'm still really excited that our friend's child has been declared peanut allergy free after 4 years in the Duke/UNC trials.

It seems I'm finding (or folks will send them over) a new article every day.  Canada is apparently a good travel destination for allergy sufferers, and Air Canada is the first airline to have peanut free buffer zones on planes (by government order, which I find startling).   Can't say I'd pick a destination based on allergens right now, but if we were allergic to peanuts that might be a different story.  If you had to pick something NOT to be allergic to, peanuts are pretty high on my list.  Milk, eggs, and soy would be hard to avoid, but at least most of those folks don't react to it being in the air around them.

So all is well, there are good studies and trials coming along, it is going to take forever, but one day there will be standard courses of treatment for these severe food allergies.  There have been a staggering number of people coming through the allergist's office this morning for allergy shots today too.  Never had to do that, but I'm sure they are unfamiliar with our applesauce mixed with allergen routine too :)

Day 26 - asthma update and what in the world is a filbert?

The good news is that little man seems to be improving with the puffy eyes and allergy symptoms.  Still has a meaty cough but that will probably take longer.  The great news is that there has been no trace of wheezing.  Hooray for the QVAR inhaler!  That's two colds down since we started that medicine daily, and I think I'm a believer now that we have the asthma under control!  No more emergency trips to the peds office and urgent care? (ok maybe I'm being a little optimistic?)

No reactions to the walnut doses but we're still watchful every morning for the two hours after his dose.

We were checking labels this morning and found that hazelnuts can be listed as filberts (Arnold's bread), which I had never seen before (at least it listed both).  Add that to the mental checklist of things we can't eat/have on hand...

Enjoying some quiet time in the morning with friends waiting for the rain to let up - we have fishing in our future if the winds don't stir up too much.  Else we might be shore fishing :)

The applesauce doctor

Day 23 - June 19. 2013

Today was a little tough.  P's face is red, his eyes are puffy, and he clearly doesn't feel well.  It's a little scary when he constantly looks like he's on the border of an allergic reaction and you're giving him a known allergen.  He made it through the day ok (with some extra help from the nebulizer just to be safe).  After dinner he started rubbing his eyes really hard and his face was getting really red, so we gave him Benadryl and kept an eye on him.  We weren't at home or we would have tried the children's Zyrtec, but we don't carry that with us.  I told him he might have to go to the doctor tomorrow and he replied, "But not the applesauce doctor, the OTHER doctor".  :) Poor kid sees a few too many doctors, but that was really funny.  I'll have to tell the allergist next Tuesday that he is known as the applesauce doctor.

All is well, just had to share the applesauce doctor and that it's worrisome when he's puffy already to give him his dose of walnut powder.  But... we have friends who just posted that their little girl is now officially peanut allergy free!!!  (After ~4 years in the Duke/UNC trials).  They are thrilled and have been through a lot to get there, but it's so great to see a success story with people that we know for nut desensitization.  There is hope for us too.  (And maybe one day this will be an FDA approved treatment!)

Day 21 - croutons, cookies, and summer colds, OH MY

June 17, 2013

Warning - here begins my rambling:
On the mind today after conversations with several good friends, some of the less obvious culprits for tree nut allergens are:

• Croutons - no idea why, but these are REALLY hard to find that don't say "processed in a facility with"...
• Corn chips (tortilla chips) - a few brands we can't use
• Pretzels - this one seemed odd to me but some of them used shared equipment
• Cereal Bars - most brands also make granola bars and most granola contains nuts we can't have
• salad dressings!
• breads - the fancier the bread, the more likely they make a nutty bread variety on the same equipment.  The cheap breads tend to be fine but we always double check the labels (and double check each other).

Essentially, if it has a label, READ IT.  If it doesn't have a label and you didn't make it or it didn't grow that way, DON'T EAT IT.  Ask those awkward questions (politely!) of the waiter about what's in the dessert crust (get the chef), or the restaurant owner, or your friends.  Be kind, but ask.  If you aren't sure, leave something off your kid's plate.  That trip to the ER is not worth letting them have a bite of that cookie they are begging for.  Go get the safe ones out of the car.

Some favorite brands that are safe for P:

• Walgreens granola choc chip bars for emergency kid food - these are processed with peanuts and almonds, but we can have both of those
• Enjoy Life Foods - (ELF) - their soft cookies are the best top 8 allergen free cookies I've ever tasted.  We particularly like the snickerdoodles.  They don't taste like the snickerdoodles I grew up with, but they are delicious.  
• Enjoy Life Foods - bars - hard to find - but so far yummy.  The cherry cobbler bars were a hit for the race last weekend with the little man.  I'm not a fan of lots of processed foods but sometimes it's nice to have something that can go in the stroller for emergency snacks other than squeeze applesauce!
• Lucy's cookies - major allergen free - can get in small snack packs of 3 cookies.  I keep these in the car for restaurant dilemmas (if he can't have ANY of the desserts), or if everyone else can have something that he can't.  (This recently happened at Moe's after a playdate in the park, every other kid is eating a cookie and he couldn't have any of the three options).  Up until now he'd just take a lollipop but he's finally starting to care about being different.  So yay for Lucy's cookies or tiny oreo packs.  (ELF cookies taste better but don't have small packs).  You can get 18 of the Lucy's 3-packs on amazon for a good deal if you keep an eye on the price. (variety pack)  That will last us a VERY long time. 

Other random things - I'm getting coupons and emails from all sorts of allergy things lately.  FARE (the food allergy website) sends out newsletters.  The one today had links to medic alert bracelets.  We have an engraved medical ID, but so far I haven't seen the need to pay for a monthly service for this.  Mabel's labels has some cool allergy alert stickers that they print your specific info onto.  (good for short term things like the preschool at church).  I still tell them every single time we drop him off and write it on his nametag on his back to make sure they don't give him food outside of the stuff they show us before we leave.  (usually goldfish and apple juice).  

Little by little P seems to finally be grasping that this allergy thing means something.  This is real progress from six months ago.  He's talking to friends at preschool about it, and he can now (finally!) tell you that he's allergic to walnuts, pecans, and hazelnuts.  (He used to pick something at random and tell you he was allergic to bananas.... (he's not!))  And, (hooray!),  you can more or less understand him.  (Yay speech therapy!)  I'll take it.  He's recently decided that his allergy bracelet is indeed a bracelet with his info on it and not a watch.  (He has been very determined for a while that he needs his watch!) His new teachers (new class at school) are adjusting to him pretty well too.  One of them has a kid slightly older at the school that has an allergy.  Both seem fine with the idea of actually using an epi auto injector.  Which is great, because those things are intimidating.  I do find it odd that epinephrine is stored in the classroom, but benadryl is at the front desk.  Don't get me wrong, I'm THRILLED that the epinephrine is even IN the classrooms.  Time matters if you need one of those things.  Our old daycare kept them locked up in the office.  I wouldn't want a teacher to have to hesitate to leave a class alone to run to the office or call up there and have someone not be right there.  I'd rather they err on the side of giving him the shot if they think he needs it and having it 4 feet away.  They also have photo cards on the medicine cabinet in the room.  Each kid with an allergy has a card with a photo, list of allergies, and list of meds.  (So a sub or floater will know at a very quick glance which kid and what meds are available in the room and up front at the main desk).  

In other news, I noticed P had puffy eyes when I picked him up and he was coughing on the way home.  That's NOT a good sign with this little guy, who goes from 0 to wheezing often in 4 hours or less.  I gave him Benadryl tonight to help as an antihistamine, and the cough was deep enough we broke out the nebulizer and Xopenex.  I'd have used the albuterol but it winds him up so badly I figured this was the lesser of the two evils.  He has a better chance of getting to sleep on Xopenex.   Now I have to stop from going in every hour to see if he's breathing ok.  At least we have a nebulizer and we're really close to a neighborhood ER.  Asthma and allergies they can certainly handle! And if he's coughing in the morning the allergist is going to get a call before we dose him.  Summer cold plus asthma plus allergen makes mom a nervous nellie.  

What else.. the excema is still there and mild, no real issue here.  He's taking his daily walnut dose with applesauce like a champ.  He doesn't bat an eye anymore - how quickly normal changes and how resilient and adaptive little kids can be!

Thanks to all our friends and family for your kind words (and for putting up with my long winded rambles).  Love you all!

Just how small is 6 milligrams of walnut?

It is hard to wrap your head around what 6 milligrams of walnut looks like so here is a photo.  This is the dosage that Patrick took for the first two weeks.

And here is a 12mg dosage, this is what he started on today and will be on for the next two weeks.

I've never weighed a walnut but according to joepiebaker on cheftalk.com they normally weigh between 18 to 23 grams but about half of that weight is in the shell.  Just to make the math easy let's say a walnut weighs 10 grams.  So Patrick's 6mg dosage for the first two weeks was 0.0006 of a walnut per day.  At that rate it would take him about 4 1/2 years to eat one walnut!  That is a really small dosage.

This on the other hand is a ginormous amount of walnuts.

My best guess is there are about 12000 walnuts in that photo. At 6mg a day it would take 54,000 years to eat all of those :)

Day 15 - upping the dose

June 11th, 2013

Back to the allergist today to up the dose.  Almost forgot this morning I had the 6mg dose out before I realized I can't give that to him today.  Routines...

Little boys get bored fast in rooms at doc offices.  He was zooming around the room wearing a cape on the rolling stool again, pushing off the walls and furniture.  We got to "drive" around the room for a while on the stool and then distracted with toys.

Today's dose (and the new daily dose) was 12mg.  We both got bored but we can leave after 2 hours or so.  Grateful that we were bored :)

We discussed the excema but no one is really concerned.  He's always had a mild case of it and this seems a little more than normal but nothing to worry over.

Will add another photo of super p later - cant seem to add it from the phone interface

This was superhero P zooming around the room.  It was a long morning at the allergist - but better to be bored than excited there.  2 weeks until we go back to up the dosage!

Day 1.5

[husband of the blog owner speaking here]

My wife tackled the first day of the desensitization program at the allergist office and I was on deck to tackle the second. I sent this email to my team at work to let them know about the desensitization program we were putting our son through.  My wife said I should post this on her blog since it shows a different perspective.

"We’re starting our son a 2 year walnut desensitization program for his walnut allergy so I’ll be working from his allergist office tomorrow morning.  They grind up very very tiny amounts of walnut (like 1/100^th of a walnut) into powder form and then mix it in with applesauce to get kids to eat it.  We give him this powder concoction every day for 2 weeks then go back to the Dr’s office where they try an increased amount, assuming he doesn’t react then we give him that amount for the next 2 weeks….over and over again for 2 years until he can eat a reasonable number of walnuts without going into anaphylactic shock.

Once that is over we tackle pecans (another 2 years) and then hazelnuts (another 2 years).  So I’ll be working from the allergist office roughly one morning a month for the next 6 years :) "

Day 11

Day 11!  

We've gotten WAY more questions and referrals to friends of friends with kids with new allergies than we expected.  It's great!  (and a little scary!)  

Some good links for parents of kids with food allergies:

http://community.kidswithfoodallergies.org/ (great forums for parents to ask and answer each other)

http://www.foodallergy.org (FARE website)

http://www.ncfaces.org (local support group for parents of kids with food allergies)

Links for useful stuff:

http://www.allergyapparel.com (order cases, cooling blankets, holsters, etc..)

http://www.mabelslabels.com/products/Allergy%20Alert%20Labels (allergy stickers)

http://www.stickyj.com/medical-emergency-childrens-medical-ids.html (medical ID bracelets - lots of kid friendly options)

http://www.enjoylifefoods.com/  - the only actually good soft cookies that are top-8 allergen free that we've found so far. :)  You can get bars on amazon, cookies at earth fare, whole foods type stores.

Day 10

June 6th, 2013

The excema on his arms is still there and persistent - trying lotions and all of the usual stuff.  I washed him in super sensitive baby soap, but it's not like they use that at preschool.  Most of the bumpy spots are on his upper arms.  We'll see how it goes - if it keeps up we'll talk to the allergist about it.

Today's dose was easy - he didn't even bat an eye at the two or three bites of applesauce.  Who knew they'd adjust to a change at breakfast so fast!

Nothing else to report which is GREAT news so far.

Day 9

June 5, 2013

Today was pretty easy - again no complaints/arguments about the morning dose.  We had a speech appointment during the two hour window so I was keeping a close eye on him.  He kept scratching his lower arm and said he had a mosquito bite, but I saw a lot of bumps on his upper arm and was a bit nervous.  There were no other symptoms or signs of alarm.  And after two hours the little bumps were still there (and he did indeed have a mosquito bite on his lower arm).

That being said, we also have had a minor change in laundry detergent - the bumps were ONLY under his shirt.  So we'll be switching back to the slightly different detergent we had before and keeping an eye on that.  

All is well - day 9 is in the books. :)

Interesting pubmed article about cross-reaction incidence for hazelnut, walnut, and pecan (interesting those are the ONLY three he reacts to on the RAST blood tests).  I knew walnut and pecan were in the same genetic "family", but was surprised to see the link to hazelnuts.

Day 8

June 4th

This morning went fine - this is slowly becoming normal to serve up a small dose of applesauce and "allergy medicine" every morning at breakfast.  Both kids are getting used to this and the commentary on it is less each day.

Q and A time - we've gotten a lot of questions so here's our attempt to answer them.

• Why did we do this?  We feel that the risk is better taken now in a clinical and controlled setting than later (in school for instance) when we won't be right there to help Patrick take the right steps if he has an accidental ingestion.
• How did you find out about all this?  We've been following some folks in the Duke/UNC peanut trials, watching for trials for tree nuts US wide, and tracking some of the studies out of stanford.  (wouldn't you hope for a "cure" if it was you!?
• What are SLIT and OIT?
• SLIT - sublingual immunotherapy is where they dissolve a small amount of the allergen in a liquid and place it under the tongue.  It is one of the two common methods of administering an oral allergen during desensitization therapy or clinical trials.
• OIT - Oral Immunotharpy - the allergen is ground usually into a powder and mixed with some very simple food (applesauce is common) - then eaten by the patient.
• What are you guys doing?  We are doing OIT with one nut (walnut powder) and mixing it with applesuace.  The doses are tiny.  (barely a whiff of powder).  Our protocol is pretty similar to the one for the walnut OIT study at Arkansas Children's. (see link below)
• Where can I read about SLIT and OIT and what's going on in the news?
• NY Times article -  Stanford's Dr. Kari Nadeau and multiple desensitization trial
• Walnut OIT study- Arkansas Children's Hospital - essentially can desensitizing a patient to 5000mg of walnut also help with desensitizing them to a second nut that was not part of the trial. "Dosing begins with a one-day walnut oral desensitization protocol. Starting at 0.1 mg protein and increasing every thirty minutes until a maximum dose of 6 mg is reached or until allergic symptoms develop. After the initial escalation day, subjects achieving at least 1.5 mg and up to 6 mg of walnut protein, will continue daily dosing with dosing build-every two weeks to a maximum dose of 1500mg walnut protein at 34 weeks. A daily maintenance dose (1500mg or the highest dose reached by 34 weeks) will be given for 4 weeks followed by a 5 gram protein oral food challenge to walnut and a 5 gram protein oral food challenge to the second tree nut (at 38 weeks), after which the study will be unblinded. Active treatment subjects will continue on the 1500mg walnut protein daily dose for a maximum of 33 months."
• Duke Peanut OIT - article on their current results from their peanut trial
• Spring 2013 newsletter from FARE - has an article on evaluating immunotherapies -  SLIT and OIT.
• Where are you doing this?  In our allergist's office in the beginning and then at home.  Whenever the dosage is increased we'll be in the doc's office.  Day 1 was the entire day, day 2 a few hours.
• What's the current dose? We're at 6milligrams right now.  A milligram is a few grains of powder.  It's pretty tiny!  That's about 1/100th of a walnut.
• What's the desired result?  Initially - just some minimum of protection if he were to accidentally ingest a bite of something with walnut in it.  Long term - we're hoping for true desensitization and retraining his immune system not to over react to walnuts (and later other nuts).
• Is there a guarantee that this will work?  Simply put, no.  But we wouldn't be going through this if we didn't think it was worth it and would improve his risk and potentially quality of life.
• Is this right for everyone?  Of course not.  It's scary.  There are risks.  But we feel like the controlled risks are greater than the uncontrolled ones (when he's in school for instance).  The cost is also prohibitive if you're not part of a study (and we are not).  Asthma also complicates being involved in a study and often precludes kids (we fall into this category).  Asthma needs to be well under control or the risks would be much higher.  We couldn't start until we sorted out our asthma issues for several months.
• What's the timeframe?  Roughly two years per allergen (nut in our case) - so we're looking at potentially 6 years.
• Why doesn't everyone do this? We can't be 100% sure it will work to the point that he can just eat walnuts one day, it's a crazy long process, it's a lot of work and time, and it's expensive.  It's not an FDA approved treatment yet.  One day...

Keep them coming friends... we'll answer whatever we can :)

Day 7

June 3rd
Wow - it's really been a week??  We are taking the daily dose with breakfast and getting no complaints or arguments over it.  Big sister helpfully told little brother that he was eating walnuts this morning and we had to do some backpedaling.  We don't want either of them to think that he can go out and eat a walnut.  She's technically correct, but we've been telling him it's medicine to help with his allergies.  She might get the difference, but I don't think he does.  Thankfully all is going well.  We're still on the 6mg dose and will stay at this level for another week.  The grandparents didn't have any problem dosing him over the weekend (THANK YOU!) and we've seen nothing in the 2 hour window after each dose.  His teachers at preschool are also keeping a close eye out and we're letting them know on school days what time the "window" closes.  I know it makes them a little nervous, but we are all adjusting to the new normal.  Of course now he's about to transition to a new class at school - so we'll have these conversations again with the new teachers.  Folks have generally been very supportive, if a little nervous.   (Trust me we understand!)  Slow and steady is the plan moving forward.

The weekend off for a wedding was just what mom and dad needed.  Just breathe - and adjust every day (and always) to the new normal.  Find the good in your life and let that be your joy.  It's already there if you look for it.