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.