175 mgms, 200 mgms, getting closer every day!

Last night my husband and I were watching a movie.  There was a scene in the movie where a mother turns to her child and says "come on, let's go get some ice cream."  The movie kept playing, but I was lost in my own thoughts for a moment as I realized that this was something I've never been able to say to my children.  We don't have the luxury of stopping at an ice cream parlor for ice cream.  There are way too many risks for B to mistakenly eat something that could kill her.  Even though I was momentarily sad for yet another childhood luxury that B has had to miss out on, I quickly remembered that this is fixable.  I don't think we will be able to take her to ice cream parlors even after her peanut OIT therapy is complete, because she will still be in danger of cross contamination from other tree nuts that she will still be allergic to... but it's okay!  She won't be allergic to peanuts anymore, and if we wanted to (or could afford to) desensitize her to the other nuts she is allergic to, we can!  We have something other than strict avoidance that works!

I am so grateful for OIT, and the very few doctors who are providing it in their private practices.  B has been doing really great!  She up-dosed to 175 mgms and then to 200 mgms all without any problems.  Before we began the therapy, I couldn't imagine feeding my child the very food that we've been adamantly avoiding for so many years.  The thought of it turned my stomach.  But now, giving her a daily dose, and seeing with my own eyes how her body has been able to accept it and learn that it's just a food, has been so freeing.  At the beginning, I was hoping she would be able to make it through the entire therapy, and now I am almost certain that she will.  There could be a problem at any time, we know there are risks.  We know that she still has to keep all of her allergy safety precautions in place because her body cannot handle even a smidgen more than 200mgs.... but she's getting there.  In just 2 more appointments, she will be eating a whole peanut!  Even more amazing, by the end of May (barring any illnesses or other setbacks) she will be eating 8 peanuts!  The unthinkable is possible.  I am so humbled, thankful, grateful, I can't really express what I am. This therapy is amazing!

150mgs 1/2 of a peanut!

Brooke has up-dosed to 1/2 of a peanut, which is 150 mgs and did so almost as seamlessly as she has with her other up-dose appointments.  About 2 minutes after the nurse fed her the peanut flour, Brooke started to complain about a stinging/burning tongue.  I had her gulp down a cup of water and examined her tongue. There was never any swelling, and the stinging sensation went away as soon as she had finished the water.  Each day that we dose at home has gone very well.  She hasn't had a problem since.

We will begin flying again soon.  Southwest came out with some one-way sales, which ends up costing the same as driving and staying a night in a hotel... plus is WAY easier on us.  We are looking forward to what the next few months will bring.  If we stay on track, and Brooke can keep from getting sick, she is projected to be eating a whole peanut (300 mgms in peanut flour) by the end of January.

Home-schooling is going great. I truly believe that keeping her home this year was in her best interest.  She has only gotten sick once this fall.  Last year, she was sick so frequently that it ended up leading to 4 or 5 ear infections.  Her immune system seems to be getting so much stronger, an awesome side effect of desensitization in my opinion.  When her brother, father and I all came down with colds recently, she never caught it.  When she was ill with a fever last month, she bounced back in day.  All very uncharacteristic of her normal immune system behavior.  I couldn't be more elated!

We continue to feel blessed every day, that we are able to obtain this life saving therapy for Brooke.  Her legions of supporters, her heroes, have been helping us get through this through prayer, donations of items to sell and monetary donations.  We are so grateful for those that care so much about our little girl!

Brooke is just one of tens of thousands who suffers from life threatening food allergies. There are so many, many children who could and should be able to benefit from this therapy, but cannot for reasons of their own.  So, we feel very fortunate that Brooke is able to be just one of a few OIT patients that is on her way to a cure and a whole new life free from fear of peanuts.

125 mgms

She did it again! She up-dosed to 125mgs without so much as a hiccup.  To say that I am astonished, in awe, dumbfounded, or in utter amazement would be an understatement.  This treatment really works, and I am so very thankful that we have been able to do this for Brooke. We have several heroes in our life who have helped us along the way.  To all of them, I just want to say; thank you for giving my little girl a chance at a normal life.  Whether you have simply prayed for this to work, or whether you have donated your time to help me with a fundraiser, or whether you have donated financially... you all are our heroes.

Back to 75, then on to 100 mgms

Wow, has it really been a month since I have posted?  Time flies when you're trying to be supermom!  It's 5:45 in the morning, my day started about an hour ago.  I woke up early and couldn't get back to sleep as my mind was too busy spinning, thinking about all the things I need to get done today.  One of them was to update the blog... check!

B has been on 100mgms of peanut for the past week.  Next week she will up-dose to 125 mgms.  I miss the early days of dosing when the dose doubled each time... but at the same time, I know that we have to take it "low and slow" as the doctor puts it.  Even though I would like to move faster, we specifically picked our doctor with the "low and slow" protocol because we felt it would be safer for B, with less side effects.  So far, she has been doing great!  Each time we return to the office for an updose, the nurse asks B if she has had any itchy mouth, tummy aches, etc. and each time B looks at her like "no, why would I"... lol!

It still feels surreal, to think that B is eating actual peanut.  I have to pinch myself sometimes and my eyes well up with tears, not from the pain of just having pinched myself... but from the amazing journey that she is on.  I absolutely believe with all my heart that this is the road she was meant to go down.  I believe that God wanted this for her.  I know that some of my friends and family don't believe in God, but everything that has happened in our lives that has lead us up to this point is just beyond coincidental.

I've had people ask me, and honestly I have wondered myself, why would God give B a life threatening allergy to nuts?  I don't know that He causes things to happen, but rather allows them to happen.  There is so much awfulness in the world, peanut allergies being just one of them.  Why does B have this allergy?  No one in our family has any type of food allergy, there's no reason for her to have it.  Why did God allow this awful allergy? It makes our lives a thousand times harder than it has to be, and can take the life of our daughter in a split second.  A preacher and friend, Tim Brown (who's son nearly lost his life when a basketball size boulder was thrown from the top of Fall Creek Falls by teens, hit his 3 year old son in the head) once said that God allows things to happen because all things are meant to bring glory to Him.  I admit that it sounds pretty awful, and I don't fully understand that concept.  I don't understand how a child being molested or women being raped, or innocent people being murdered can ever glorify Him, but somehow it does.  It is all allowed, because certain circumstances bring people closer to God.  Certain circumstances bring non-believers to God.  Somehow, Brooke's life threatening allergy is bringing or is going to bring glory to God. Here is my take on it;

• Ever since Brooke was an itty bitty baby, she has not ever been able to be without me.  I tried to return to full time work after she was 6 weeks old, but soon found that I couldn't.  She would starve herself all day long, until I returned to nurse her.  We tried different bottles, different nipples, etc. to no avail.  She also would not sleep anywhere but in my arms.  I listened to the advice of others and tried everything to get her to sleep on her own, and she just never would.  I pretty much gave up my job at that point, and did so happily, to be a stay at home mom.  I was the breadwinner of the family at that point, so it didn't make much sense... but Scott and I both knew it was the right thing to do.  I only worked part time at night so that she would either be with me, or with her daddy.  So, the night back in 2007 that we found out about  B's life threatening peanut allergy, we were the ones to find her allergy... it wasn't found accidentally at some day care.  She went into anaphylaxis in my presence, ME, the best possible person to find out about it (aside from a Dr. or nurse), as I had had training on emergency medicine and knew exactly what was happening, how severe it was, and what treatment was needed.  I thank God every day that she was home with me when it happened, and not in a daycare, or church nursery, or even with just daddy. None of those people may have known what to do.  
• That night that she went into anaphylaxis, we just happened to have children's Benadryl to give her... which saved her life. We had the Benadryl because 6 months earlier... she had a full blown rash after eating eggs.  Had that not happened, we wouldn't have had the Benadryl, Brooke would have had to wait for EMT's to arrive... who knows what could have or might have happened?  I don't even want to think about it... but I thank God every day that she had that minor reaction to eggs (an allergy she has since outgrown) so that we had the Benadryl to immediately administer to her.
• Fast forward to 2011, when my husband was threatened with losing his job due to a mission change at the AF guard base where he worked.  I had to return to work, just in case he really did loose his job.  B was attending a peanut free private school kindergarten, and I was staying home with my son.  I asked for more hours at my job, but they didn't have any to give me.  I started a job search, and looked for more work for over a month.  Just when I was about to give up, an office called me with a full time offer. We enrolled my son at the same school B was going to, and I began working again.  My husband did end up loosing his job, but it didn't happen for several months.  In the meanwhile... my car kept breaking down and over heating and could not be fixed.  Scott had already replaced the engine once...  so we were ready to move on.  Because we had been earning a dual income for the past several months, we had saved enough money to put down a decent amount on a new car.  We traded in our piece of junk and bought a brand new car.  Even with the threat of loosing his job, we were confident in our ability to pay mortgage and new car payment with just my salary.  I thank God every day, that we now have a new, reliable car with which to drive to North Carolina every two weeks.
• Once the news came that Scott was definitely going to loose his job, he began looking for a new one.  We had no idea where he would find one, but an incredible opportunity came up for him.  Out of hundreds of applicants for this position, he was one of the few selected for interview.  Out of the few interviewed, he was the one who got the job!  I thank God every day for the opportunity He led Scott to.  Before this job opportunity, there was no way that we could have ever considered doing OIT peanut therapy for B.   It is a struggle now, but we are making it.  Which leads me to;
• All the help we have received from others.  Be it the friend who led me to look into OIT, or the friend I made who helped me think of ideas for fundraising, or be it the people who so graciously give items for a benefit garage sale, or be it those who have donated funds to us to help with the 25,000 we will need to spend on completing this 2 year journey... all of these people have been placed in our lives by God.  I don't think anything is accidental.  It all happens for a reason.  I thank God everyday for the friends we have met and the people He has placed in our lives who care more about helping Brooke than even some of her own family members.
• There are so many other examples of reasons I know God is leading us down this journey of healing for Brooke. It can't all just be coincidental.  I feel His love when I think about how we are spending 1,000.00+ a month for this treatment and wonder how it can be possible when we live from check to check.  I feel His grace whenever B up-doses and has absolutely no issues with taking her daily dose of her poison.  I thank God every day that that there is a treatment available, and that B is receiving it. Thank you to all of you who have loved my child enough to help, be it with prayers or donations of items or donations of money.  I thank God everyday for all of you.

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!

Patience is a virtue

Three weeks after seeing the doctor who said he'd "call me next week to schedule a start date", we are still waiting.  I understand the cause for delay though, as he is already slammed with patients who are in the process of OIT.  There are no words to describe how much a difference in quality of life this treatment will provide for our family and I know there are thousands more families out there who want the same for their children.  The popularity of the OIT therapy is spreading like wildfire, and for good reason!  I wanted to start my daughter on OIT this summer for several reasons, but timing is out of my hands.  Until we are able to get started, we will keep saving, keep praying, and keep hoping. Patience really is a virtue.... and one that I have no choice but to work on. Ü

Hope for the future!

Brooke’s life threatening peanut allergies changed the course of our lives in many ways.  But now, we are about the grab the reins and regain a sense of normalcy and more importantly, regain safety for our beautiful daughter.

Last week, we travelled 6+ hours (one way), to go meet a man that has the ability to give Brooke a normal life, free from fear of peanuts.  We had an appointment for a consult with one of only a few doctors in the United States who is offering Oral Immunotherapy in their private practice.  The program is so popular, and knowledge about it is becoming so widespread, that Brooke was not immediately entered into the program, as the doctor is slammed with patients he is currently treating.  Currently, OIT is the only therapy offered for children with life threatening peanut allergies.  The only other treatment for peanut allergies is strict avoidance, which is like a ticking time bomb… if you ask me.  How can you avoid it if you can’t see it, you can’t ban it, it’s everywhere and in almost everything, you can’t convince others of the necessity to keep it away from your child, and your only hope of your child not encountering it is to rely on other people to do the “right thing”. 

When Brooke is admitted to the therapy program, she will slowly be desensitized over the course of two years.  During the first year of therapy, the doctor will administer extremely minute amounts of peanut orally (starting with 1/3,000^th of a peanut).  Every other week, we will travel 6+ hours to increase the dose she will consume.  If she can successfully complete the program, she will be able to eat peanuts freely without the fear of anaphylaxis.  Actually, she will be required to eat them daily to maintain her desensitization.  The therapy is not cheap.  We estimate that will be spending nearly $25,000 over the next 2 years.  This includes the cost of the therapy, gas to get there and back, hotel stays, and food while we travel, maybe flights if we can afford them.  The therapy is not covered by insurance, as it is not FDA approved and has no billing code to bill under.  The $25,000 will all be out of pocket.  We created a fundraising page for Brooke http://www.youcaring.com/medical-fundraiser/brooke-s-allergy-bashers-/40353 in hopes that we would be able to raise enough funds to get the therapy for Brooke.  So far, through generous donations from family and friends (and even one stranger), a few fundraisers I’ve put together and the tax returns we got this year, we’ve been able to fund 1/3^rd of the total amount we will need to give Brooke a new life!  We are so excited, and really looking forward to starting OIT, as this therapy will impact her life in such a positive way! This is such a big commitment for our family and more than we can afford on our own right now. If you are able, we would greatly appreciate your assistance in helping us fund the treatments and improve the quality of life for Brooke & our family.  Even if it is only a $5.00 donation, it all adds up!

You gotta get involved!

Among all the lessons we’ve learned as parents of a child with life threatening food allergies, the hardest lesson to accept has definitely been the reality that there will always be a small percentage of people who will not consider your child’s right to live above their own selfishness.  There will always be people who don’t understand, yet refuse to let you educate them.  There will always be people who resent your child.  There will always be people who could care less about your child’s safety.  And, there will always be people who will shun your child because it’s easier to shun her than to deal with her needs… and all of it really, really hurts (and it sucks even more when those type of people live right next door to you).

So, how do you live a life dealing with people like that?  Even though they are the minority, one bad seed can spoil the whole bunch.  How do you make the world a better place for your child, when you've been told that all you can do is avoid the problem?  This has been the topic of many of my conversations with the Lord.  I am a woman of faith, and I’ve been praying since the day we discovered Brooke’s allergies, for God to take them back.  I have prayed for a miracle. I have prayed for her to outgrow the allergies. However, I have come to realize that miraculous healing is not what God has planned for Brooke.

A wise preacher in TX once said “Your miracle is not going to happen while you sit on your knees and pray. Your miracle is not going to happen while you lay in the bed and wish. Your miracle is not going to happen just because you need it. You gotta get involved." -TD Jakes.

Though it would be awesome, I do not believe that you can pray away your sickness or your physical ailments or your allergies, but I do believe that God gave man the wisdom to create medicine.  And, I do believe what Mr. TD Jakes says, we can’t just sit back and expect a miracle… we gotta get involved.  I've always said that I would do anything to help Brooke get rid of her allergies.  My heart has always been ready to get involved... I just needed to find the right path to take.

Scott and I had heard of clinical trials aimed at researching potential cures for food allergies. I never really paid much attention to the studies because I thought of them as unattainable.  Most of them were being conducted hours and hours away from us.  The child had to get past the waiting list, and meet certain requirements to be admitted to the study, and then there was always the possibility that your child would be the one to receive the “placebo”.  But, the biggest deterrent was the thought of letting my child take part in an experimental study, something that hadn’t yet been proven successful.

Last fall, I was reading a blog that my friend Anna writes.  Anna and I have known each other for the last 4 years.  We came to know each other through the play/support group I had joined for moms with food allergic children.  Anna’s son has multiple life threatening food allergies, and for as long as I have known her, she has been researching all the latest studies for a cure. Her latest blog post was all about a doctor she had found who was offering a proven therapy called Oral Immunotherapy (OIT) in his private practice.  This wasn’t a study, or an experiment, it was a REAL treatment!  I was captivated to say the least.

I spent the next several weeks looking over Anna’s research, doing a little research of my own, and reading as much as I could about other parents who were thinking of doing OIT, in the process of doing OIT, or had already completed OIT for their children.  It didn’t take long for me to decide that this was the road we needed to travel.  This was our way to “get involved!”

Now what do we do?

When Brooke was diagnosed with life threatening peanut allergies, we were told that there was no cure.  The only treatment we could provide our child, was a life of strict avoidance. In case of accidental exposure, we were prescribed an epi-pen and taught how to use it.  It soon became apparent that our entire world needed to be restructured.  First, we had to “un-poison” our home.  I remember raking through all the food in our pantry and cupboards and throwing everything away that had a peanut warning on the label.  At every subsequent grocery shopping trip, we had to check and recheck labels to make sure we weren’t buying foods that could potentially kill our child.  Gone were the days of spontaneous trips to a restaurant… from that point forward, each restaurant had to be called beforehand, so we could check if there were safe foods, or any risk of cross contamination.  Brooke’s environment, no matter where she was, needed to be checked for peanut-residue-landmines that could have been anywhere.  Dog treats had to be checked before Brooke could let the dog lick her. Shopping carts had to be wiped down before Brooke could sit in them.  Public picnic benches and tables needed to be avoided at all costs. And then, there was the need to educate others… which is always difficult when you’re trying to walk a thin line between keeping your child safe and pissing off the person who has to be inconvenienced in order to accommodate her needs.

Unfortunately all of this knowledge didn’t come all at once. We’ve learned bits and pieces along the way.  We are still learning. We have had to learn to employ extraordinary vigilance at all times.  We’ve encountered people who think we are crazy or overreacting or seeking attention.  We’ve encountered people who are hostile because Brooke’s food allergies inconvenience them.  We’ve encountered all kinds of circumstances and attitudes that have surprised us and upset us and everything in-between.  For the most part, people have been kind, caring, compassionate, understanding and most importantly accommodating, which is a huge blessing… it makes the pissed off people easier to tolerate.  Ü

How did this happen?

As I stated previously, I knew nothing of the food allergy world.  After Brooke was diagnosed with life threatening food allergies, I really wanted to know why she was allergic.  There were several hypotheses at the time.  The hygiene hypothesis was the biggest and most convincing theory in place.  We are a clean culture.  We wash our hands at the slightest hint of dirt, we sanitize everything from our skin to our counters and everything in between.  As for the hygiene hypothesis, I was guilty as charged.  Another hypothesis was that children delivered via C-section were more likely to develop allergies.  Guilty.  Both of those hypotheses centered around the theory that children’s immune systems were not developing properly, due to an extraordinarily clean environment.  Any child who bypasses the birthing canal also bypasses the bacteria they would have normally encountered through birth.  Yet another theory, was that mothers who ate copious amounts of peanut containing foods during the pregnancy, would increase the chances of food allergy in the child.  Guilty.  I had also heard that immunizations might play a part in a child’s underdeveloped immune system.  My daughter had received all of her immunizations as recommended by the CDC.  Guilty. 

 

The more I looked into all of these hypothesis, the more it broke my heart.  Had I done this to my child?  Was I the one who had caused her immune system to overreact to a food?  I spent a great number of years feeling guilty… but in the end, the truth is that no one really understands what causes food allergies.  Since then, some of these hypotheses have been dispelled and new ones have taken their place.  There are always new theories, some of which apply to us, and some of them don’t.  Now there are new hypotheses such as; if your family has smokers, their intake of toxins can mutate the genes of future off spring causing allergies, and if you start your child on refined first foods like rice flakes and oatmeal, that can cause allergies…. And so on and so forth.  The reality is that millions of women have C-sections every day, and billions of families have some family member that smokes, everyone sanitizes, everyone starts their children on rice and oatmeal, and millions of women eat peanuts during their pregnancy… yet only some of us have children who go on to develop life threatening food allergies, and no one is sure of the real reason why.  I had to stop feeling guilty and learn to live in the food allergy world, and most importantly I had to help my daughter survive in it.

Brooke's first encounter with peanut butter

Brooke was 18 months old when, at our whits end, we decided to try the fattening peanut butter her pediatrician kept pushing us to try. I put a dab of it on the end of a spoon and mixed it with a tiny bit of honey.  I remember having to coax Brooke to sit down and try it.  The instant that I finally got her to open up and take a taste, was the moment that our lives would be forever changed.

Brooke let me put the spoon in her mouth.  She trusted me.  I should have listened to my instincts, but I didn't.  I listened to the medical doctor and her insistent pushing over and over and over again, telling me to feed my egg allergic, eczema suffering, sensitive to ketchup and ranch child, peanut butter.   But even if we would have waited, the results would have been the same... sooner or later we would have found out that Brooke was indeed deathly allergic to peanuts.  I suppose somewhere in the back of my mind, I must have thought that if she was allergic to peanuts, that she would just get a rash like she did with the scrambled eggs I had fed her only months earlier.  However, the reactions were so very, very different. 

As soon as I put that spoon in her mouth, she was batting at her mouth and crying to get it out.  I knew at that point, something was very wrong.  I opened her mouth to try to get the peanut butter out for her, but it was too late.  She had already swallowed it.  Almost instantly, she began to get large red hives all around her mouth.  Within one minute her beautiful little lips were swollen to more than twice their normal size.  I rushed Scott to get the benedryl, and with shaking hands I administered a dose.  That dose of benedryl probably saved her life life that night.  I knew well enough, that we needed to get Brooke to the ER immediately.  We put her in the car, and drove as fast as we could to the ER which was about 10 minutes away.  The entire car ride there I kept asking Brooke to stick her tongue out so I could see it.  I knew from my medical emergencies courses in college, what anaphylaxis was, and what they symptoms were.  I knew that if her tongue were to swell, that it could swell enough to close off her airway and she could die.  That is why I was horrified to see, that when she stuck her tongue out, the tip of it was rapidly swelling.

It may sound crazy, but I am so thankful that Brooke had that allergic reaction to eggs when she was 12 months old.  If she had not had that reaction, we wouldn't have had the benedryl that night and Brooke's story could have turned out very differently.  Luckily though, the benedryl kicked in before the base of her tongue could swell, and she survived her first anaphylactic reaction.  We arrived at the ER and told them why we were there.  We said that we were pretty sure the benedryl was working and that we just wanted to wait in the waiting room for awhile.  We waited for about an hour and then went back home.

Knowing what I know now, Brooke should have been admitted that night.  What I now know, that I didn't know back then, is that anaphylactic reactions can come back up to 6 hours after the first symptoms.  I thank God for keeping my daughter safe and alive that night, because after we left the ER, we came home and went to bed.

I remember taking Brooke to see a pediatric allergist at some point.  I can't really remember whether it was before or after the peanut butter exposure, but I do remember that our experience at the allergists office wasn't any better than at the peds office. We went for Brooke's appointment, and when the doc came in he asked "what would you like me to do?" Still being VERY new to allergies, I had no idea what he was asking of me. I thought for sure that he, being the doctor, would come in and tell me what needed to be done. When I admitted that I wasn't sure what he was asking, he told me to come back when I knew what I wanted, and we were dismissed.

We found a new allergist.  The next allergist was much more informative.  It was from him that I learned that children with eczema were more prone to develop food allergies, and it was from him that I learned that if a child has an allergic reaction to one of the top 8 allergens (eggs) then they should avoid the others until after they are tested.  It was from him that I learned how to properly use an epi pen and advised to keep it with us everywhere we went.  It is from him that I should have learned to look for a new pediatrician.  Around that same time frame, I learned that one of my friends had gone through a similar experience and had recently found out that her son was deathly allergic to peanuts as well.  She also had a friend who had a son with peanut and milk allergies.  Our food allergy world was starting to grow.  This friend of my friend was interested in starting a support group for moms of children with food allergies, and I was none the more eager to join up with them.

The group, Food Allergy Moms, was such a blessing.  I learned so much from these other mothers who were going through the same things I was going through.  I was shocked to learn how common food allergies in children really were.  There were women in the group who had children allergic to eggs, nuts, peanuts, milk, garlic, sunflower, wheat, you name it.  The need for such a group was soon realized as it quickly grew, and soon we were all sharing tips and recipes and offering support for ourselves as well as our children.

Although I still had so much more to learn, I had arrived at a good place.  My child had friends who were like her and I had made friends whom I could learn from.  I was going to need it.

The beginning

I've decided to start a blog to archive Brooke's journey dealing with life threatening food allergies.  Although I have vehemently tried to stay away from blogging, because I feel it is just another social media time stealer, I think this is probably the best way to keep everyone informed and updated about her health and progress trying to cure her peanut allergy.  I wanted to title the blog "Brooke's Allergy Bashers" because that is the plan... to bash her allergies out of existance... peanuts are her worst enemy, but we are going to beat them.  The best place to start the story of her journey, is at the beginning;

When Brooke was conceived, Scott and I were in the last semester of our college years.  Being low income college kids, we qualified for public aid and WIC.  WIC (women infants and children) was a great program... every month we received coupons for food.  The coupons were meant to aid in buying healthy foods throughout my pregnancy.  Among the coupons we received, there were always at least 6 or 7 coupons for free jars of peanut butter.  I loved peanut butter, and it was a convenient food to take with me during long days at work.  I would make a peanut butter and jelly sandwich and stick it in the my pocket of my scrubs every day that I had to work.  I'd sneak bites of my sandwich between patients, which held me over until my 1:00 lunch break.  I had a peanut butter and jelly every Monday, Tuesday, Wednesday and Thursday for my entire pregnancy.  Little did I know, the theory at that time was that women who were pregnant should eat foods containing peanuts in moderation or avoid them altogether to reduce the risk of food allergies.

My lack of knowledge about the food allergy world wasn't surprising.  No one in my family has food allergies.  No one in my husbands family has food allergies.  Food allergies were so foreign, that I just about missed the signs that something was immunologically wrong with my child.

Brooke was born a week earlier than her due date.  The doctors insisted that she needed to be delivered via C-section because she was breech and because her amniotic fluid was very low.  We set the date for early on a Monday morning, and out she came.  The delivery wasn't complicated, everything went well.  She was quite a bit jaundice, but not enough to make the doctors worry about sending her home 3 days later.  Brooke's first few months went well.  She was exclusively breastfed until 6 months of age.  During breastfeeding, I continued eating my free jars of peanut butter and whatever else I had on hand.  Brooke had her immunizations on time, usually without problem... sometimes a fever and some pain, but nothing more.

At 6 months, we started to introduce Brooke to table foods.  We started with Gerber's first foods, rice flakes and oatmeal, which she did fine with.  We graduated on to other foods, green beans, applesauce, peas... but when we got to carrots we noticed that the carrots were bothering her skin.  When we fed them to her, she got little red blotches around her mouth.  After asking the doctor about it, we were told not to feed them to her and to be sure to introduce only one new food at a time, eliminating any that seemed problematic, and to reintroduce carrots at a later date.  That advice sufficed for the time being.

Fast forward a few months, we didn't think much about the carrot incident.  We waited awhile, tried carrots again and she was fine with them.  Around 12 months old, we started to notice that Brooke was getting eczema in the folds of her skin.   It was terrible behind her knees and in the space in front of her elbows.  We would ask the pediatrician (a new one, since we had relocated) time and time again, what to do about her eczema.  The advice given was simple; use mild soap like dove, put a good lotion on it, like eucerin, and try not to let her bother it.  Occasionally the peds would have us rub steroid cream on it, which always helped... but we were cautioned not to 'overuse' it.  Not at any point, were we counseled about the fact that children who have eczema are more prone to developing food allergies.  That would have been some good information to have been armed with.

Around Brooke's one year well visit, we were told that Brooke wasn't gaining weight fast enough.  The peds were concerned because her weight graph wasn't climbing, instead it was plateauing.  We were encouraged to start giving her more fattening table foods, adding butter to just about everything and to start introducing fatty things like peanut butter.  As naive as I was about the food allergy world, I DID know that the recommendations were to NOT introduce peanuts until 2 or 3 years of age.  I brought this up, but the peds didn't really seem concerned.  I recalled reading articles about time frames that highly allergenic foods should be introduced, and made the decision to wait on introducing peanuts.

We did however, decide to introduce eggs.  I was desperate to find new things for Brooke to eat, as she was a really picky eater and seemed to have aversions to many textures.  I called a friend for advice and was told that at 1 year old, her children love to eat scrambled eggs!  I thought that was a good idea and scrambled some eggs for Brooke.  She loved them.  Soon after feeding them to her, I noticed little pinpoint red spots popping up on her hands and arms.  I lifted her clothing and saw her torso covered in little red spots.  Scott and I were dumbfounded, and didn't really know what was going on.  We did have enough sense to get Brooke in the car and rush to Walgreen's for some children's benadryl.  After giving her a dose, she was fine.  The little red dots soon faded and all was well again.

At Brooke's next pediatric visit, which had turned into every 2 week weight check visits... I declared "my daughter is allergic to eggs."  The ped listened and notated it in her chart, advising me to avoid eggs and flu shots.  Thinking back to that point in time... I should have been advised to avoid egg in everything and I should have been taught how to read a food label, and we should have been referred to a pediatric allergist.  But, what should have been done and what was, were two different stories.

Every two weeks we went back to the peds for Brooke's weight checks, and every two weeks I was lectured on feeding my child, who was still plateauing.  I felt like a terrible mother.  I was constantly worried about her weight.  I tried my best to get Brooke to eat and to try new things and nothing I did would work.  I was still breastfeeding at that point, because it was the only thing Brooke would heartily eat.  We tried fattening foods, junk foods, hot dogs, french fries.  We began to notice that anytime she had ketchup or ranch dressing on her skin, she would get an irritated red mark wherever the dressing had touched her delicate skin.  The eczema was still out of control, flaring up in the folds of her skin.  We needed help, but it would still be awhile before we got any. 

Brooke turned 17 months right before Christmas.  I had made peanut butter cookies for the holidays.  I hadn't planned on feeding them to Brooke, because I was still adamant about waiting until she turned 2 or 3.  I had made the cookies for Scott and I.  One night, after eating one of my cookies, I gave Brooke a kiss on her sweet little cheek.  Almost instantly 3 tiny little bumps appeared, and I thought... hmmm that's strange.  I wonder if she is allergic to peanuts?

At Brooke's next 2 week weight check visit, I mentioned the peanut butter cookie incident to the ped.  She didn't seem concerned.  She was more concerned about Brooke's lack of weight gain and continued lecturing me about foods that Brooke should be eating to "fatten her up."  She again, suggested peanut butter.  I remember reminding the ped about the egg incident and the 3 little bumps with the peanut butter cookie and asking her the question "what if my daughter is allergic to peanut butter?"  Her response was that if I was worried about it, she could prescribe me an epi pen.  I hardly even knew what an epi pen was.  I didn't truly understand the concept of food allergies or realize how serious they could be.  I suppose that is why, when we finally decided to try giving Brooke peanut butter, Scott and I were shocked by what took place.