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.