Maintenance

B is now in what is considered the "maintenance" part of her two year long journey.  This entire second year, she will be consuming 4.5 grams of peanut on a daily basis.  During this time it is expected that her IgE will lower to a desensitized level.  At the end of B's second year of therapy, she will have a food challenge, which will consist of eating a large amount of peanut.  If she does not react, she will be free to consume as much peanut as she wants... but will be required to eat peanut on an almost daily basis to maintain her desensitization.

Last June, we found out that there was a local pediatric allergist who was planning on starting his own private practice and was planning to offer OIT!  Imagine how thrilled I was to learn that this doctor's office would be 20 minutes from our home.  The thought of no longer travelling 7+ hours to obtain treatment was so appealing.  We would no longer have to spend money on travel expenses or hotels.  No more subsequent trips to NC each time my child became ill.  The kids wouldn't have to miss anymore school, my hubby wouldn't have to take any more sick days!  This change would cut our out of pocket expenses in half.  No more $1,000.00/ month bills!  I couldn't believe our luck!

When I say "luck," I truly mean "LUCK!"

You see, there are only 24 doctors across the United States who are offering this therapy in private practice.  This life saving treatment is definitely not well known or even completely accepted.  We just happened to have the 24th doctor opening up an OIT clinic, do so 20 minutes from our home!  The only hesitation we had was that this doctor was new to OIT and had no previous experience with OIT.  But, after talking to him, meeting with him and learning that he was going to follow the exact same protocol as our current North Carolina doctor, we decided to take a leap of faith and trust that this was all in God's plan for B... maybe it wasn't "luck" after all!

In October, we officially made the switch to B's new allergist.  With the switch in location, also came a switch in the form of peanut.  Our NC doctor had been giving B 2400 milligrams of peanut flour which our new allergist calculated to be the equivalent of 4.5 grams of actual peanut.  Depending on the size of the peanut, it equals 4 or 5 peanuts that B is consuming daily.  We had previously been told that 2400 mgms of peanut flour was equal to 8 peanuts... but found out through several sources that this simply wasn't true.  So, 4 to 5 peanuts daily it is!

Now that we have a doctor that is closer, we are considering desensitizing B to all of her allergens.  There are some tree nuts that are just as deadly to B as peanuts are.  We chose to desensitize to peanut first because of how ubiquitous it is.  It truly is everywhere (as are clueless people that don't believe accommodations for children with life threatening allergies are necessary).

I cannot stress enough, how life changing this therapy has been for our family and for B. She is not even done with the therapy yet, but we have already seen a tremendous difference in her confidence.  While she still has to be extremely careful about coming into contact with certain tree nuts, we are not as worried about peanut.  She still has to be careful about what she eats because she cannot have even a single milligram more than 4.5 grams of peanut.  She still follows all the same precautions and only eats foods we provide her.  She still brings her own safe cupcake to friends birthday parties.  We still examine food labels like we are the FBI.  However we know that she is much more protected from peanut now, than she was a year ago... and that (to us) is priceless!

Finally! An update!

Wow, the last time I posted it was April!  I promise I am not a slacker... I have had a lot on my plate during the last 4 months.  My husband was deployed at the end of March, for training in his new career field with the Air National Guard. He was temporarily assigned to Keesler Air Force Base in Biloxi, MS.  Anyone who knows me well, knows that I will go to great lengths to prevent any type of family separation. So, we have spent the majority of the summer in Biloxi, MS with my husband.  Meanwhile, B is still doing her peanut OI therapy, but instead of biweekly visits, we have been stretching them out to monthly visits.  In order to keep the family together (and keep B on her therapy) I made 4 trips from GA to NC, 4 trips from NC to GA, 3 trips from GA to MS, 3 trips from MS to GA, 1 trip from GA to TN, 1 trip from TN to NC and one trip back home from NC to GA... 17 road trips in a 4 month time span.  Yes, I am tired.

During that same time period, I was also doing battle with B's school for her protective 504 accommodations. This year B is back in public school and repeating 2nd grade.  Although I home schooled her for 2nd grade last year, there are several reasons why we decided it would be best to have her repeat. Reason number one is her size... she is my teeny tiny girl.  When she was in public school for 1st grade she was the smallest in her class and we figured having her repeat second would put her in a class with kids more her size.  She was also the youngest in her 1st grade class, which brings me to reason number two.  Her late summer birthday meant she turned another year older long after her classmates had already reached that same age.  Now, she is in a class where she is the oldest, but a lot of the kids are about to turn 8 too... so she will be more in line with their maturity.  Reason number three was made from hearing about how hard 3rd grade is.  I didn't want B to have to go back to public school entering into 3rd grade.  She is going to have to get used to public school after a very lax year of homeschooling, so we thought it better to repeat information than have to learn new material while getting used to public school again. The 4th reason, which may seem silly, was made after consideration that her little brother, who started kindergarten this year, will be in the same hallway as 2nd graders and will be able to walk with his big sis to class.  And, lastly, we wanted her to repeat 2nd just in case I missed any material that she was supposed to learn.

Anyway, back to the protective accommodations... I asked the school for several things this year, and spent the majority of the summer digging up facts about how other schools have successfully implemented similar policies.  I presented the superintendent with a list of schools from around the nation who have created inclusive and protective wellness plans, all of which I called and verified the info.  I wrote letter after letter in support of our requests. I presented legal case precedence to support our requests.  I never backed down and, I won!  I'm not bragging or anything... but thanks to my hard work and determination for B to be safe AND included, she now has full access to everything her non-allergic peers have.  Without my determination, the school might not have changed a thing... but I think credit should also be given to a change in principals (getting a new principal was a HUGE blessing to my efforts.  I can honestly say I LOVE the new principal) and also to the many, many women from team anaphylaxis who helped me with everything and anything I needed help with. They gave me unyielding support, answered all of my questions, gave me ideas and encouragement when I needed it. They pushed me not to give up. They pointed me in the right direction to find laws and disability rights. This group of women is more valuable than gold.  I could not have accomplished any of what I accomplished without their help.  For these women, I am eternally grateful!

Due to all the wonderful accommodations this year, I can finally relax. My stress levels are lower than they have been since 2011, when B started school.  It is really difficult to put your child's life in someone else's hands and have to worry about her safety all day long.  This year, when I drop her off at school... I feel like I can go on about my day knowing that she is perfectly safe at school.  That is HUGE!  Part of this new found stress relief is due to the wonderful accommodations that she has at school, but the other part of it is the Oral Immunotherapy that B has been doing for the past year.

In these last 4 months, B has progressed steadily and without any complications.  She is now consuming 2100 mgms of peanut on a daily basis.  According to her doc, that is the equivalent of 7 peanuts! Next week she will up-dose to 8 peanuts (2400 mgms) and will be in maintenance, which is the 2nd part of her two-year-long journey.  For the entire second year, she will consume 8 peanuts a day.  Next August (2015) she will graduate peanut OIT and is expected to be able to consume any amount of peanut without having a reaction of any sort.  Amazing!  I still shake my head in disbelief to think of where B started and where she is headed.  To anyone out there reading my blog, who is also considering this therapy.  I encourage you to try it.  The therapy is a life changer, a life saver, a blessing.  I feel so fortunate that my girl was able to get the therapy and that she has done so well with it.  So many new doors are open for her.  Her life is finally starting to have some sort of normalcy.

About the blog... This will probably be my last post.  It takes a great deal of time for me to sit and write all of my thoughts out, and I don't think anyone is really reading.  If you are reading and you can think of a good reason why I should continue to keep writing, please leave a comment and let me know.  If what I am writing is helping even one person, it would be worth it for me to keep the blog.  However, if no one is reading... I have a million other great things to spend time on.  Ü

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.