75 mgms, Then back to 50 mgm

B successfully up dosed to 75 mgs a few weeks ago.  She had been on that dose at home for a few days... but then she became ill.  It happened on a Tuesday.  We began our homescchooling day as usual.  Around 9am she began to complain of a headache.  I wasn't sure if it was a big deal or not because sometimes she just doesn't want to do her work.  Then an hour later, she said she was freezing cold.  I felt her forehead and she felt fine.  I told her to go get a hoodie on, and to come back to class.  About 30 minutes later, she was laying on the couch and looking miserable.  Then she started to get feverish.  I took her temp, which was at 101.7 and called her OIT doctor.  He instructed us to skip dosing for the day, and to plan on coming back to NC within the next 2 days.

For the rest of that day, Brooke rested and I let the fever burn.  At 102.7 she was miserable, so I gave her a dose of Advil.  That night, she threw up in the middle of the night.  She threw up again the next morning... but sometime in the middle of the night, her fever had broken and thankfully, it never returned.  We let her sleep all morning on Wednesday, and when she finall woke up around noon, she was all smiles.  We put her in the car and made the 6.5 hour trek to NC.  Luckily she had no other issues and was on her way to feeling much better.

The next morning, we had an appointment with the doc.  He told us that because she had bounced back so quickly, that he would only need to down dose her to her previous dosage of 50mgs.  If she hadn't recovered quickly, she would have had to down dose to 25mgs and we would have lost a month of progress.

Needless to say, we are trying very hard to keep her healthy.  We're doing all we can just short of keeping her in a bubble.  She takes probiotics and multivitamins daily.  She sleeps with a heavy duty air purifier in her room.  We use xylitol nasal spray at the first hint of any respiratory distress.  We home school, we hand sanitize, we wash hand frequently... but sometimes all of that just isn't enough.  Sometimes she is just going to get sick and there's nothing we can do to prevent it.

50 Mgms

B has successfully completed her two weeks on 25mgs of peanut flour, and is now taking a daily dose of 50mgs. We had a little bit of a scare while B was on her 25 mgms dose.  On a Sunday morning, 4 days after starting her 25mgs dose, we were busy in the kitchen whipping up some chocolate chip pancakes.  B was at my side doing what she loves most... throwing the chocolate chips into the pancake batter.  It seems inevitable that a few of those chocolate chips almost always miss, and somehow land in her mouth.  We were using Hershey's chocolate chips.  The same brand of chocolate chips that we always use.  Normally we use the semi sweet variety, but this time I had purchased the milk chocolate.  I always buy Hershey's because there is no mention of any type of nuts in the ingredients list, and there is no mention of using shared equipment.  I've always felt safe using them.  This morning, however, I wondered about those chocolate chips... as my daughter ran to the bathroom and began throwing up.

She hadn't eaten or drank anything that morning except for about 5 of those chocolate chips, so I was sure that they were the cause of her vomiting.  It was very scary for both of us, as I remembered the recent story of 13 year old Natalie Giorgi 's death after biting into a peanut laced desert.  After she bit the treat, which contained her poison, she spit it out.  She felt fine for about 20 minutes, and the she began to vomit.  She had no other signs or symptoms that anything was wrong... until it was too late to save her.

The freshness of Natalie's tragedy was definitely on my mind, as I held my precious daughter's hair away from her mouth and rubbed her back while she threw up the 5 chocolate chips.  I told my husband to have the epi pen ready, and wondered if we should give it to her.  It is such a hard call to make, when you aren't sure that an allergen has been ingested, and you're wondering what is making her vomit.

It was a stark reminder that even though B is consuming a daily dose of carefully measured peanut powder,  that her little body cannot handle even an inkling more than her dose.  We still have to be extremely careful.  After the fact, I no longer think that the chocolate chips contained any nuts.  I called Hershey's bright and early the next morning, and grilled the customer service rep about the possibility of cross contamination.  She assured me that there are no products made with nuts in the facility where the chocolate chips are made. We monitored B for the rest of the day and she was fine.  At first, I wondered if she had caught an illness, but she never developed a fever or any other symptoms.  After vomiting, she was fine and has been fine ever since.  I still don't know what made her throw up.  I guess it was just some weird fluke... or maybe that her nervousness had finally hit bottom.  Maybe it was that she had too much sugar in her empty belly?  I may never know.  I'm just extremely thankful that nothing ever came of it.

B is now 2 days into her 50 mgs dose and she is doing great.  I continue to be amazed that she is actually eating and tolerating this tiny amount of peanut.  I am humbled that there are doctors out there who believe in this therapy enough to offer it in their private practices.  There are only about 15 of these doctors scattered across the United States, and I consider all of them to be heroes.  I am grateful that we are able to provide this therapy for our sweet girl.  At a cost of 1000.00 a month (500 for Dr fees and 500 for travel), I don't know how we are doing it, but somehow we are.  If you would like to help, we have a fundraiser set up in her name here:  B's fundraiser We thank you in advance for any help you may be able to provide.

I'd also like to share the link to Natalie Giorgi's Sunshine Foundation . Her family is dedicated to preserving Natalie's memory by increasing public awareness and education of life threatening food allergies, which will better protect and prevent unnecessary harm for all.

25 mgms

I felt like the luckiest girl in the world the day that Airtran came out with a 56.00 one way sale.  It meant that B and I could fly round-trip to Raleigh for the exact same price as driving round-trip would cost!  So, for this updose appointment we flew to Raleigh and back again on the same day.  I cannot describe in words, how much less stressful it was to fly.  The 6 hour drive to Raleigh (which usually ends up being 7, or 8, or even 9 hours when traffic gets bad) was only a little more than 1 hour in a plane!  It was awesome.

Brooke's up-dose appt to 25mgs went very smoothly.  I talked to the doctor about her recent feelings of needing to throw up.  We both agreed those sensations are probably due to nerves.  Things have been really hectic lately...so I can't blame her for being in a state of upset. Especially when she knows she is eating her allergen on a daily basis.  We are home now, doing the daily dose of 25mgs and getting ready to start our home-school year.  Things are going really good!

12 mgs

Brooke's up dose to 12 mgs of peanut flour went much smoother than her initial escalation day. She had no tummy pain, no throat pain, no problems whatsoever.  Dosing at home is going great too!  I am slowly adjusting her dosing time to the afternoon, because her next appointment will be later in the day, and dosing is supposed to be done around the same time every day.

We have more big news to share! We have finally made our decision and I am going to home school Brooke this year.  I have withdrawn both children from the public school, and I have sent in the letter of intent to the board of education.  It was a really hard decision, but in the end, we just couldn't ignore all the reasons in favor of home schooling.  I'm ready for an adventure!

We begin...

B officially began her treatment for peanut desensitization (OIT) on Monday 7/15.  I had a mix of emotions leading up to her appointment.  I was terrified, excited, apprehensive, stressed, and wondering if we had made the right decision for B.   While desensitization therapy is not really a new concept, doing it with peanuts is.  I just needed to remind myself that I had already done the research, picked the best doctor, and knew that this treatment would save my daughter’s life should she accidentally consume trace amounts of peanut.  It was really a no brainer.  The more severe the peanut allergy, the greater the need to treat it.  I tried to put my nervousness aside, and give it to God.

The 6 hour drive to NC was uneventful.  B knew why we were headed there.  I didn’t want to use any suggestive language with her, so I didn’t ask her if she was scared or nervous, but I could tell that she was a bit apprehensive. I couldn’t blame her.  She knew that we were going to NC where a doctor was going to feed her “invisible peanuts.”  She’s a smart girl, and she undoubtedly was recalling all the warnings and conversations we had about how even the smallest amount of peanut could send her into anaphylaxis. She had a right to be apprehensive.  We had spent the better part of her entire life avoiding the very food we were now driving to NC for her to consume.  I could understand her apprehension, I was feeling it too.

The day before B’s appointment, I had given her a small can of prune juice to drink.  It had been a few days since she had passed a BM.  I didn’t want her to go into OIT with constipation pains and for those pains to be mistaken as tummy pain from the dose of peanut. I wanted to make sure everything would go smoothly and without any confusion.

The first day of B’s therapy, we checked in and waited for our turn to start.  After chatting with the doc, it didn’t take long for the nurse to come in with first dose of “invisible peanut”.  It was indeed invisible, or at least mixed into the applesauce so well that I couldn’t detect it. Dr. N started with .1 mg of peanut flour.  B did fine, and so the next dose came 20 minutes later.  The dose was .5 mg, and still invisible to the naked eye. Soon after this dose, B started to complain that her tummy was hurting.  I figured the prune juice was doing its thing, and took her to the restroom. She went, and said she felt much better.  After each of the next few doses, she would complain of tummy pain.  Each time I took her to the bathroom, and each time she would have a BM.  I was starting to get nervous about B’s tummy pain because B was really crying about it.  The nurse suspected that it was the prune juice causing the pain but the Dr. came to check on her anyway. He was sure that the tummy pain was unrelated to the dose of peanuts. I wasn’t so sure.

By the 5^th dose, Brooke was pretty worked up and saying that her throat hurt. I was in a panic on the inside… ready to pull out the Benadryl and Epi pen...  but trying to stay calm, cool and collected on the outside for B’s sake.  I asked the nurse to get the Dr. and when he came to check her out he maintained that she was okay.  He still didn't think the peanut dose had anything to do with her tummy pain.   I explained that B had taken prune juice for her constipation several times, and had never had any pain associated with it.  She had never cried like she was crying now.  I wasn’t sure if the throat pain had more to do with the fact that B was working herself up over the tummy pain, or if it was related to the peanut dose.  Dr. N wasn’t concerned about it, because her breathing was fine and there were no other symptoms.

By the 6^th and final dose (6 mgs), B was feeling better. She had passed gas several times, and was no longer complaining of any pain anywhere.  We were instructed to return the next day to repeat the final dose as a stand alone dose.  

The next day, we returned to the office for the stand alone dose.  B was still a little apprehensive.  After consuming it, she said that her tongue was stinging.  Again, inner panicking.  I notified the nurse, who notified the Dr, who was not concerned about it.  I gave her some water and used some distraction techniques and she was fine.  She was observed for almost 3 hours before we were released and sent home with our 14 day supply of 6mgs peanut flour dosing cups.

At home, I had to sleep with B the first night. I wasn’t confident enough to let her go unsupervised all night long.  In the middle of the night she had a brief coughing fit.  It was nothing really, but I was glad I was there with her.  This morning, I gave B her first “at home” dose. I was nervous inside, but trying to act nonchalant about it... like eating peanut flour was something she’d been able to do all along.  She was still a little hesitant to eat it, but she did fine.  She had no complaints, until 2 hours later when we were on the way to the library. She said her throat felt tight.  I had more inner panicking and hoped I wouldn’t have to stab her with the epi pen and leave the library in an ambulance.  Luckily nothing ever came of it.

I wasn’t sure what to think.  I didn’t know if she was just nervous because she knows she is consuming peanuts, and the nervousness is leading to a “lump in the throat” feeling… or if the peanut dose is actually affecting her in an anaphylactic sort of way.  I had a brilliant idea to try to figure it out. I used her empty dose cup from this morning’s dose and pretended to give her another dose.  There wasn’t any peanut in it, just applesauce.  We went through the whole process like normal.  I scraped the edges of the cup to make sure I was getting every last drop, then had her lick every last drop off of the spoon.  She is now in her “pretend 2 hour observation period.”  I guess only time will tell if the symptoms she feels is really from peanut or just from nervousness. 

B will be at 6mgs for the next 12 days, then back to NC we go.  The next visit will put her at 12mgs.  Again, I am nervous, excited, stressed but most of all hopeful.  The more her body can tolerate, the better protected she will be against accidental consumption. This is definitely a life changing experience.  A wonderfully, terrifying, fascinating, life changing experience.

Pondering our options

With Brooke's OIT start date creeping closer everyday, we've begun to wonder what we can do to make this next year flow as smoothly as possible.  I've been seriously considering homeschooling Brooke for 2nd grade, while she goes through the therapy program.  There are days when I feel really optimistic about it and I think "I'm definitely going to do it" and there are other days when I feel like it would be such an enormous task, that there is no way I can possibly do it.  Our playbook is full of different options... but which one would be best for our family?

Homeschooling makes so much sense.  In addition to traveling to Raleigh every other week for dose increases, we will also have to go back to adjust her dose every time she gets sick.  Homeschooling would facilitate better health and less trips to NC *hopefully.  Little brother has the option to start pre-K this next year and if he goes, it will be his first encounter with public school.  Whenever he starts school, be it this Aug or Aug 2014, I anticipate that he will be getting sick pretty frequently.  If he gets sick, so will Brooke... and then back to Raleigh we go.   Keeping him home and homeschooling him (pre-K) right along with Brooke will be a challenge, but it would be worth it to avoid the illnesses and extra trips to NC, not to mention the added expense of the illnesses and the cost of travel back and forth.

Homeschooling also makes sense for the obvious reasons; like no longer having to worry about whether or not other parents are packing PB&J's and nutty snacks for their children to consume around my child.  Despite the school district sending home several pleading letters last school year, asking parents to please pack any snack but nutty snacks, parents still packed them.  If she were at home with me, my anxiety level would be next to nil.  I wouldn't have to worry about the fact that B's classroom is NOT a peanut/tree nut free zone.  I wouldn't have to worry about whether or not B touches a sink faucet with peanut butter on the handle, or whether or not her teacher remembered to inform the sub about B's life threatening allergies.  I wouldn't have to worry about teachers eating nut containing snacks and then holding B's hand as they walk her out to the pickup line.  I wouldn't have to worry about whether or not B feels left out b/c she has to sit at a separate table away from her class.  I wouldn't have to worry about whether or not her teacher is considering every little possible thing that can go wrong, like I do.  I wouldn't have to deal with her teacher thinking I am some over-reacting-hovering-helicopter mom any time I ask a question about how my child is being protected from offending foods.  I wouldn't have to obsess over the fact that the school nurse insists on keeping B's life saving epi-pen locked away in a cabinet, where only she and one other person have access to the keys.  Life would be great!

Brooke is such an eager learner, so I know she would be great at being home-schooled.  I already have her doing simple multiplication, adding/subtracting multi-digit numbers, learning cursive etc... but the thought of homeschooling terrifies me for the simple fact that I am not as disciplined or organized as I need to be in order to be her teacher.  I don't even know what to teach?  I know there are different curriculum offered to home-schooling parents... but the thought of researching them all and picking "the best", seems like a daunting task.  I already spend too much time online (and feel guilty about it)... so adding to it by researching how to home-school, planning lesson plans, searching for activities, etc. already have me overwhelmed and discouraged.

However, if I failed to teach her what she needed to know... I wouldn't be heartbroken if she had to repeat the 2nd grade.  She is the youngest (because of her late summer birthday) and the smallest in her class.  We had the option of starting her in K-garten or keeping her home another year, but decided to start her because she was academically ready.  She is one smart cookie!

There is one more huge factor that may sway our decision to go ahead and home-school.  My husband has a 3 month deployment to Mississippi coming up.  We've already had more than 12 weeks of separation this year due to new job training and Air Guard duty, so the thought of spending 3 more months away from each other is unbearable.  If B were being home-schooled, it would mean we could go with him, or at least be with him every other week.  I could just as easily home-school her in MS as I could home-school her here at home.

The major drawback to all of this, is the fact that I will have to delay returning to my career for another year. I'm not quite certain what that would mean for me.  I am a dental hygienist, and I'm not sure how willing dentists are to employ a hygienist who has been out of her field for over 2 years.  Will I forget my clinical skills or my knowledge about dental health?  Would I be able to jump right back in... like riding a bike?  I'm sure I could, but is there anyone out there that would give me that chance?

Ultimately, I hope we make the right decision... not only for Brooke, but for our entire family, too.  I've been praying  over the options, and would love input and thoughts from anyone else who reads my blog.

We have a date!

Good news!  Brooke is scheduled to start OIT in July!  We had the option to start in June, but with my husband being out of town for training in June... it was a much better decision to wait until July.  I am nervous, excited, hopeful, and stressed.  It is terrifying to think that the doctor will be feeding her minuscule amounts of the very food we've been adamantly avoiding for so long.  Not every child can handle OIT.  Some have complications that are bothersome enough that they have to pull out of the therapy before they can become desensitized.  But, we have to remember that there are so many who have gone before Brooke and have become successfully desensitized.  I hope with all my heart, that the road that Brooke travels down, will be easy and complication free.  She so deserves a chance at normalcy, and so do we.  The next two years will be very hard, but there is a very bright light at the end of this tunnel!