600 mgms, next is 900 mgms

Tonight I overheard a conversation that B was having with my husband.  She said "dad, when I am done with my peanut thearpy, I want to get a dog... but before I get a dog I want to go eat at chik-fil-A, and then I want to go to dunkin donuts and get a doughnut for dessert... then we can go to petsmart and get a dog."  I couldn't help but smile.  This is the life she has wanted but has never complained about not having.  She has handled her allergies with the grace of an adult, never complaining about the things she has had to avoid.  Now, a whole new world will be open for her to explore.  I am so excited about that, and more importantly... so is she!

B has completed her time on her 400 and 500mgms doses and is now on 600mgms of peanut flour and will increase to 900 mgms next week.  It seems as if the days are starting to speed up the closer we get to her goal of 2400 mgms.  If she stays on track, doesn't get sick or have to down dose, she should be in maintenance by the middle of June!  B is still a year and some months away from graduating the program, but she is well on her way!

B hasn't had any issues with her up-dosing appointments, nor has she had any issues taking her doses at home.  Everything is going extremely well, and we never take for granted how very blessed we are to have her enrolled in this therapy!

What it's like to be an "allergy mom" -by Carissa K. (with a few of my own edits)

"What it's Like to Be an Allergy-Mom"

1. As the parent of a child with food allergies, it makes us crazy when people make any sort of assumption about food allergies other than this one assumption -- a food allergy is a life-threatening condition that causes children to stop. breathing. immediately. It's very real... and it's very scary.

2. As the parent of a child with food allergies we want you to know that this is not a lifestyle choice. While it's admirable that some people choose to eat healthy and be aware of the ingredients in their food, we aren't standing in the grocery store aisle reading the label on everything that goes into our cart as a hobby. We're studying those ingredients to make sure there's not an obscure ingredient that could kill our children. (Did you know that caramel coloring is made out of dairy? Are you familiar with the difference between sodium lactate and potassium lactate?  Did you know that gummy worms can contain peanuts?)

3. As the parent of a child with food allergies there is not a play-date or school activity that our child will attend without us having a discussion with the hosting parent, event chaperon or teacher first. Every event my child has ever participated in (ever!) from t-ball to school to summer camps has always been preempted with a medical conversation first. We know we're perceived as high-maintenance parents. And we feel badly about that because the level of diligence we're forced to have about the subject of food allergies may not be consistent with the level of diligence our personalities would normally reflect.

4. As the parent of a child with food allergies we have laid awake at night, wondering if we'll be able to spot the signs of our child's throat closing. We've been told that anaphylaxis can happen in less than two minutes, so not only do we wonder if we'll be able to identify this emergency, we wonder if our child's teacher, babysitter, grandparent, recess monitor, friend or coach will know when our child can't breathe.

5. As a parent of a child with food allergies we have laid awake at night, wondering if our child will ever be able to attend a party in college or share a random kiss. And if she does, who will carry her epi-pen?

6. Speaking of which, as the parent of a child with food allergies we leave the house remembering the basics like phone, wallets, keys -- Benedryl and epi-pens. We know not to leave them in a car that is too hot or too cold and we always carry at least two, if not seven. Even with insurance, they are $100 a pop, so we treat them with the utmost respect for the year that we have them before they expire. But that's all ok, because those little devices carrying a shot of adrenaline could save our child, or at least sustain them, until the ambulance arrives.

7. As the parent of a child with food allergies, we sit outside every birthday party or sports practice while other parents leave. 

8. As the parent of a child with food allergies, we balance the emotional impact of being a helicopter parent against the medical threat of having our child go into anaphylaxis when we're not around. We feel guilty and scared of both.

9. As the parent of a child with food allergies, we have never relaxed, sat back and actually enjoyed or tasted a meal in a restaurant. Never. You see, we spend those meals playing and replaying the emergency plan in our head while quietly observing our child's breathing as she enjoys her meal.

10. As the parent of a child with food allergies, we regularly attend medical appointments in big time children's hospitals where we can't help but see other patients and deeply suffering families. And upon this realization, we are humbled and grateful and reminded of just how fortunate we are that we are the parents of a child with only food allergies. While our child has a life-threatening medical condition, it is manageable. And as long as we have help from you and others in managing it, our child is alive -- and that's really something!

250 mgms, 300 mgms

B successfully up-dosed to 250 mgms 2 weeks ago, and has up-dosed to 300 mgms as of yesterday. The doc says 300mgms is equivalent to ONE peanut!  Usually, when we arrive in Raleigh, we have about 2 hours to kill before B's appointment time.  We normally use that time to get lunch and stop at Pet-Co or PetsMart. B loves all animals and she especially enjoys visiting the kittens.  However, yesterday when we arrived I asked B if she wanted to go to the pet store and she said that she didn't.  That answer really surprised me, and when I inquired as to why not, she said that she wanted to hurry up and get to the doctor's office.  She said that she was so excited and that she couldn't wait to eat one peanut!  Needless to say, my heart soared.  My fearful, anxious little girl was so excited because she knew that she had reached an incredible milestone.

B ate her one peanut dose with a smile on her face and joy in her heart, then proceeded to wait out her 2 hour watch period without any problems.  She will be on this dose for the next two weeks, and then she will up dose to 400mgms.  The journey that B is on is an amazing one.  Seeing her confidence renewed and her anxiety slowly subsiding, brings joy to my own heart.  Our decision to start our daughter in OIT has been validated in so many different ways, B's excitement and joy is just one of them.

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.