Wednesday, July 1, 2015

Children For Sale!!!!!!

Yesterday, June 30th 2015 my children were sold. Ella and Maxine were bought by the highest bidder, Merck! Yesterday, June 30th 2015 Jerry Brown sold out all of our children in California....

I happened to be at the Capitol holding vigil for the Warriors in White when the news broke that Brown had signed the bill. I was holding the sign and standing silent when a stranger on the North Steps announced to us that he had signed SB277. I thought it was a sick joke, I really did. SB277 had hit the Governor's desk less than 16 hours earlier (8 of those hours he was probably sleeping). My oldest and dearest friend asked me today if I was really that shocked? I guess my answer is yes, I was really that shocked. I guess because I know (we all know) how horrid of a bill this truly is, how horribly this bill will effect California, how flawed the logic is behind this bill in my naïve heart I believed he would see through the bullshit and veto it. I guess I truly wanted to believe that Brown was for the people, that he was not bought, I guess I truly believed he would not want this to be his legacy. I think two of the most shocking things for me was that there was no religious exemption added, I always believed even if he did sign it that he would hold true to his values. I was wrong. I was naïve to think that he wasn't a sell out. I guess the hardest thing for me to swallow was the amount of time (or lack of amount of time) it took him to sign it. We all know what that means; Brown had his mind made up long ago.

It is hard for me to sympathize with Brown to be understanding of his plight. You see, I was also at the Capitol they day prior when my daughter Ella and Otto Coleman went to Browns office to deliver a petition with TWICE as many signature as the support had. I watched our children get escorted out of the office and told to drop their documents on the dirty mail room floor. I watched our children get treated like second class citizens. Did Brown ever even see that petition, did he even care? Probably not.... because he already had his mind made up. Did a single media outlet report that we had TWICE as many signatures? Or the way our children were treated? Not a single one, they told the story they wanted to tell because they are bought too.

Now, there has been a bit of controversy following the petition delivery about how we were treated versus that of Rhett Krawitt (grandson of Glaxo consultant.) No, we do not know if Rhett was allowed to drop his petition off with Brown but we can safely say he probably wasn't directed by CHP to the mail room. We can safely say that Brown at some point new about what happened at his office that day, maybe not while it was happening but certainly after the fact. What we also know is that Brown had the power to right that wrong if he wanted but he choose not too; he is just as guilty and complicate as his staff for the treatment of our children. But, why would he right that wrong, he already had his mind made up. I mean, I guess I get it.... People don't want to have to look at our vaccine injured children, its not some pretty little image they can put in a box to justify their bullshit stance on vaccines.

I think that maybe this would have been easier to swallow if I felt like Brown actually grappled with the decision. Maybe if Brown had ever at any point chose to actually meet with someone from our side, to hear our concerns..... Brown said in his signing statement that "both sides delivered their position with eloquence." Oh, BULLSHIT. I call Bullshit. How could he know our stance if he never met with our side. Brown is a coward, a bought coward that didn't have the decency to listen to the voices of a little boy in a wheelchair, a little girl with broken lungs and a brain damaged adolescent because he is to big of a chicken shit to look truth in the face. Brown could have at least pretended to care, he could have held on to the bill for at least a few more days but instead he decided to give us all a big middle finger! When Brown signed that bill in less than 16 hours he proved to all of us that not only is he bought but that he could care less about our fight, about us or about our children.

There are rumors that it was signed so quickly because his wife wants a political career and he must stay on the popular side..... Good luck with that because you just turned your back on a lot of California parents.

In the first moments after the bill was signed I was still in shock and still desperately hoped it would somehow still be vetoed. However, now that my emotions have calmed I know that while this is devastating for most and while this law will no doubt cripple California, that is what needs to happen. I can not wait to see the ramifications this law will have.... Lawsuits that will burden our justice system (and the discovery that comes with them), financial losses that will devastate an already struggling school system, the closures of schools with are inevitable, the weight on our public assistance system that it coming when parents are forced to quit their jobs, the taxes that are lost when families run from this state in alarming numbers and the real estate market that will definitely suffer when we start dumping our houses. Let the games begin. Because at the end of this when it is all said and done THAT is what Jerry Brown will have on his hands and THAT is the legacy that he will have left.

And I pray to God that not one SINGLE family is forced to vaccinate their child under duress because they have no other options.... and if they do that blood will be on Browns hands also.

Bravo Sir.... You did California proud.

I don't know what this bill means for my family at this point. I don't know if we will move or we will stay and fight. I know that over my dead body will I allow my little girl to be denied the right to go to school when she so desperately wants to go already. What I do know is that on June 30th 2015 my world came crumbling down around me.

What I DO know is that Brown can take this bill and shove it where the sun don't shine because we are just getting started.

Wednesday, June 17, 2015

These people work for us right?!

I am embarrassed to say that before SB277 I knew almost nothing about politics or how our government works. Now that I have found myself at the forefront in the fight against SB277 I am even more embarrassed than I ever thought possible that this is the way our government is run. I mean, like REALLY embarrassed. I have seen things that have made me want to cry, scream, laugh out of absurdity and legit begin to question how in the world it is possible that these people work for us?!

I did not really get my teeth into the SB277 fight until shortly before the Senate Education committee hearing. So lets start there shall we? I attended the Education hearing with my red shirt and sign in tow, I sat in one of the over flow rooms and watched the beginning testimony with all the others there in opposition to this hideous bill. We watched lie after lie after lie come out of "Dr" Pans mouth. Some of us laughed, shook our heads and mostly we tried to control our anger, after the lies were over it was our turn to go stand in line to state our opposition. Well over 1,000 people stood in line (a line that wrapped through the entire Capitol building, although the news reported there was only a few hundred in opposition) to have our 30 seconds at the microphone and state our opposition to this bill. After almost 2 hours the opposition was finished and I sat down on a bench outside and watched the live feed of the hearing from my phone. What I watched was the members of the Education committee GRILL Pan on the flaws in the bill: No public health crisis, already at "Herd Immunity," segregation of students, denying access to public education, how this effects single families and on and on and on. As I sat there I couldn't believe what I was hearing and seeing; SB277 was about to die in Education! Well, we all know what happened next. Senator Lui the Chair of the Committee told Pan he had 1 week to come back with better answers because if they took a vote right then the bill would die! WHAT?! I cant even....

Fast forward a week.... Pan comes back to Education with one measly (pun intended) amendment. The newest amendment would allow for homeschoolers to congregate with other homschoolers (something previously not allowed in the bill.) Then the strangest thing happened, with almost no questions from the committee, with not a single amendment to address the list of concerns they had that was long as my body the week before, the committee almost unanimously voted to pass the bill through. All of us were left scratching our heads....

I will leave out the Senate Judiciary Committee as well as the full Senate floor vote because if I have to discuss Hannah Beth Jackson my head might explode. However, we all know what happened there as well, SB277 got rocketed over to the Assembly to deal with.

So once SB277 made its way over to the assembly things got even weirder. One would think that because this bill would effect the access to education for 200k students that it would need to be heard in the education committee of the Assembly right? WRONG. SB277 was referred to a single committee the health committee with an overwhelming majority of Democrats sitting for the vote (Democrats seem to be the only ones voting for this stupid bill.) All the while it was a well known fact that the biggest chance to kill SB277 would have been to have it heard in Education. It has been reported that several members of the opposition had a meeting with Speaker of the Assembly Toni Atkins (the woman in charge of assigning to committees) and they were told that she had the ability to be heavy handed and refer the bill to Education but that it would likely have a devastating effect on her career as many of the Democrats are trying to push this through as fast and easy as possible. Again, WHAT?!

So on to Assembly Health Committee we go....

The day of the Assembly Health Committee THOUSANDS of people showed up to oppose SB277; however, again the press reported numbers in the hundreds. In fact, one of the Sergeants of Arms was reported to have said that in the 20 years he has worked at the Capitol he has NEVER seen that much opposition to a bill ever. The health committee was like watching a bad horror show. We saw Pan get up and stutter his way through the hard questions, Allen seemed to be citing law in all incorrect ways, Lorena Gonzales went on a rampage that was probably one of the most disrespectful things I have ever seen. At one point it is reported that a Tweet came from Miss Gonzales's account that was time stamped in the middle of the testimony... Was she Tweeting during testimony?! (It was also reported from the Assembly gallery this last Monday while watching them go over the budget it appeared that at least half of them were on their phones checking FB during that testimony, in fact an article came out in CBS that one member apparently voted wrong because he was distracted by playing on his phone during the vote.) To take it farther, at one point the camera shot over to where all the Assembly Members should have been sitting during the Health Committee yet there was only 4 chairs with people in them.... Did 3/4 of the Health Committee get up and go take a break in the middle of the opposition testimony?!

Then there was the questions that came from some of the members that seemed to be the most in opposition to this bill..... Waldron asked "How we could make parents sign a consent form taking all responsibility for our child after vaccination if we were going to mandate it? Shouldn't the state then be responsible?" Chavez (Chavez for President) asked Pan "How he could have voted yes on a bill 2 months ago that would allow hundreds of thousands of homeless children to enroll in school with out immunizations but then try to pass SB277 into law?" Chavez also asked while holding a press release from CDHP "Why he was trying to pass this law when CDHP says we have reached our goal on immunization rates?" Again, it all fell on deaf ears.... SB277 passed health with a 12-6 vote and one abstention.

So off to the Assembly floor we go.....

Again, I have to ask.... These people work for us?! In my own experience walking the halls of the Capitol day in and day out trying to speak with the Assembly Members what I have found is an overwhelming annoyance of my presence. Ok, maybe I am annoying but isn't that their job, to deal with annoying citizens that have concerns? I personally have been hung up on by numerous staffers, been looked at like a parasite, tried to get appointments to speak with these people all to no avail. Actually, while walking the halls on Monday delivering documents to various Assembly Members I approached my Senator Dr Pan in the elevator about my concerns. I was swiftly brushed off and dismissed, while I continued to walk down the hall trying to ask him what I should do he brushed me off and shut his office door in my face while I was mid sentence. There have been reports in numerous SB277 groups of constituents being hung up on, Assembly Members refusing to meet with them, being blocked on FB and Twitter for voicing polite and legitimate concerns with their representatives. Isn't that their job? To speak with their constituents about their concerns? It has also been reported that while opposition has been speaking the to their assembly members that they have been told things like "Maybe you can work something out on the side with your school." "I haven't taken a stance yet because I haven't even seen the bill" <---- Even thought they are supposed to be going on the 3rd reading of SB277 and it is scheduled to be voted on tomorrow. "I will make my decision once it comes to me on the Assembly floor" <---- It is already on the floor, and don't you think with a bill this important that I don't know maybe they should be taking a vested interest before they make a willy nilly decision to segregate my child and strip my parental rights? It has also been reported that regardless of the fact that 95 percent of calls are in opposition to SB277 one Democratic Assembly Members was quoted as saying "This bill is bad but not a single Democrat will vote against it!"

No really, these people work for us right?!

I get it.... I really do. SB277 was expected to be quietly swept under the rug, that maybe we wouldn't notice and it would just go through. I get it their phones are ringing off the hook, they have people walking in dropping off letters all day and asking to actually speak with the person that is supposed to be representing them in their district. I get it we are annoying you guys.... But, when you mess with peoples children what do you think is going to happen? I mean, these people do work for us right?!

Friday, February 20, 2015

The Measles

This is my daughter Ella, and she may be vaccine injured.

On August 11. 2013 we sat in the PICU watching our baby girl struggle to breathe; it was exactly one week before her first birthday and this was her third admission to the PICU and her seventh trip to the ER for respiratory distress in her short one year of life. As we watched her sleep hooked up to all the monitors and machines, listening to the nurses and Doctors talking about having to intubate her we both had nothing left in us.... Something had to give here, she was going to die if this continued.

It wasn't until a few week later when things calmed down that I was going through Ella's medical records and I was listing all of her hospitalizations next to all the dates of her vaccines. Ella was brought to the ER for breathing problems every single time within 3-7 days after the receipt of one of her routine vaccinations.

After Ella became sick I was told that she was high risk and that she needed to be vaccinated more than any other "Normal" child.....

Ella began her first round of steroids at 6 months old after her asthma became uncontrollable...

Nobody ever told me that because of her high dose corticosteroids she had to take for her asthma she never should have been vaccinated in the first place because her body could never mount a proper immune response anyways....

Nobody ever told me that children that fall under the allergic umbrella (asthma, eczema and food allergies) have an imbalance in their TH1/TH2 responses causing them to be in a constant state of an overactive TH2 and that vaccine adjuvants (aluminum) are specifically designed to elicit a strong TH2 response leaving her in a constant state of inflammation, her little body constantly attacking itself....

Ella is vaccine injured and there is no doubt in my soul about that. It comes down to the chicken and the egg, what came first? Was Ella born with a genetic imbalance in her TH responses and vaccines just exacerbated that? Or did the vaccines cause the dominant TH2 response that her body couldn't regulate? It doesn't really matter I guess. What I know is that Ella, just like any other baby, wasn't born with a stamp on her forehead. Babies aren't born with a stamp that says " I have a genetic condition!" or "My body cant properly detox from vaccines!"

And that is the ultimate problem with a one size fits all vaccine schedule, you just don't know by looking at a child how they will handle it.

No. Nobody told me any of this...

I found it out all my own, the hard way.

I was listening to the Doctors, I was listening to my friends, I was listening to the other moms in the mommies groups telling me I had a responsibility to the community: I needed to vaccinate my child for The Greater Good, I needed to do this to keep her safe and to protect all your children too.

So there I stood, at every well check, lighting my child on fire to keep your kid warm

And I am angry. Angry as hell.

Now, lets unpack this shall we. All out on the table.

So now here I stand, in the middle of a Measles "Epidemic" looking at the possibility of being forced to inject my children with over 40 viruses by 1st grade because why?

When did 100 cases of anything become an "Epidemic?" When did 100 cases of a disease that has a high fever and a rash mean I lose the right to make medical decisions for my family?

When did 100 cases of a disease that hasn't killed a single person in the USA in over 10 years means I have to sacrifice my children's health for yours?

The flu kills somewhere between 3,000 to 20,000 people per year... Where is the outrage for that?

Car accidents kill over 40,000 people per year, better take cars away!

In 2014 alone 3,540 families were compensated through the vaccine injury compensation program for death or serious bodily harm caused by vaccines (and those are just the ones the government conceded to and not anywhere near the total cases filed.) Where is the outrage? Where are all the people screaming for the vaccine manufacturers to be held responsible? Oh, Yah lets talk about that.

In 1986 the Vaccine Injury Compensation Program was passed into law.

Since its inception the program has awarded over 2 billion dollars to vaccine injury victims.

Prior to 1986 the vaccine manufacturers could be held liable and sued for vaccine injuries; however, they were being sued so often and loosing so much money they went to the federal government and threatened to stop making vaccines if they weren't protected. The Vaccine Injury Compensation Program was born. Vaccine manufacturers are no longer liable from any harm that is caused by their products. How are people paid then for their injuries? That's the best part.... Every single vaccine given has a tax placed on it and put into a kitty, then when your child is killed or brain damaged and you go to court you are paid back from your own tax dollars.

Let me see if I have this straight. It is very likely that mandatory vaccinations will become a law but there is NO recourse to hold the manufacturers responsible if it harms your child? Seems legit.

I am going to say it again so it can sink in.

You could be forced to give a drug to your child that could seriously harm them and if it does there is no way for you to hold them responsible.

I may be forced to inject my child with something that has a side effect of DEATH. Yes, DEATH and will have no choice in the matter, you as well.

Do you think vaccine reactions aren't real?

Tell that to the mothers of perfectly healthy, walking and talking 2 year olds that took their child in for routine vaccinations and they collapsed and died 3 hours later.

Tell that to the mothers of the 4 month old babies that put their children down for a nap after their routine vaccinations and they died in their sleep.

Tell that to the mother of a child that could name all the colors and shapes, count to 50 and sing all the nursery rhymes and after their routine vaccinations they lost their ability to speak or feed themselves.

Tell that to me, the mother of a child who has been on steroids since she was 6 months old, tell that to me when I look at my child and wonder if she will suffer from osteoporosis at the ripe old age of 5 due to the side effects of all the medications she needs to keep her lungs working.

You think vaccine reactions are rare? That the small amount that have serious side effects are worth it for The Greater Good? Fine, give me your baby, lets add them to the list of vaccine injured children. If you are that concerned with all the immunocompromised children out there that you think its worth it, that my child's health doesn't matter, then give me yours, come on... lets trade.

For those of you that think that if we knew what death of a child looked like we would be screaming for vaccines...

I argue the opposite.

Some of us know what death of a child looks like FROM vaccines....

And then there's those of us that will be taking on a life time of medical care for our children FROM vaccines.....

For those of you thinking that we have stood under the protection of your "herd immunity" for too long.....

I argue the opposite.

WE have sacrificed enough of our children to The Greater Good so you can feel safe.

You're Welcome.

I am not Anti-Vaccine. I am not really Anti-Anything. I am Pro. I am Pro-Informed Consent. I am Pro-Being-Able-To-Make-Medical-Decisions-For-My-Own-Children. I am Pro-Being-A-Fierce-Advocate-For-My-Child. I am Pro-Not-Letting-The-Government-Dictate-My-Childs-Medical-Needs.

Ella does not and will not qualify for a medical exemption. In the eyes of the medical and scientific community what happened to her was an unfortunate set of circumstances that has nothing to do with her vaccinations. In reality you pretty much have to have a seizure on the table 30 seconds after receiving a vaccine in order to get a medical exemption and even then its iffy. So now, here I stand, and I am now looking at the possibility of being forced to inject my child with something that may cause us to have to medically induce a coma and stick a tube down her throat so she can breathe. I may be forced to play the same game of Russian Roulette with my baby Maxine and just hope for the best, to just hope that her lungs don't fail also.

So know that this is all unpacked and out on the table.....

How's your week going Pro-Vaxxers?

Tuesday, December 30, 2014

The begining or the end?

This is probably not the blog you are expecting to read.

It has been roughly 6 weeks since Ella "graduated" from OIT and I am well aware that I have not updated this blog since she was somewhere around a half of a peanut and in about week 7 of her OIT journey. To be perfectly honest most of the middle trips to OIT that got her from a half a peanut all the way up to her maintenance dose are a complete blur; as it goes with 2 little babies, the holidays, work and life in general my writing has taken a back seat.

What I can tell you is that since graduation day Ella has eaten more and experienced more in 2 months than she had in the entire previous 2 years of her life.

It is quite ironic that Ella completed OIT in the month of November as many feel that November of 2014 was the "Breaking Point" for the allergy community. I can count off the top of my head 7 food allergy related deaths just since Halloween less than 3 months ago, to say that many of us have been rocked to our core is an understatement. For me, the day after Christmas made the "Breaking Point" that much more terrifying.

I have always used the hashtag #Ilovesomeonewithlifethreateningfoodallergies, that of course refers to my Ella but what many don't realize is that also refers to my older brother Brian. Never in a million years would I have ever thought that in my effort to keep Ella safe and potentially save her life that I might in fact be responsible for almost taking my brothers.

On the morning after Christmas my mom and Brian came over to have coffee and visit before heading back home to Napa and just like any other morning we had to feed Ella her daily maintenance dose of 5 Peanut M and M's. We have several theories of how Brian came in contact with Ella's dose although we still aren't really sure. How he came in contact truly doesn't matter anyways because we know he did and we know he did because it almost killed him. Brian collapsed in the street walking to his car on his way to head back home.... He was fine when he said goodbye, he walked out, he coughed 3 times and then he was lying in the street in front of my house. As I grabbed his Epi Pen Injectors and went to administer the first one it malfunctioned with all the medicine pouring out before it even came in contact with his leg (an event they may replay over and over in my head and continue to haunt me for many many days.)

I was able to successfully inject the 2nd Epi into his thigh and as I looked up at him I could see that he was beginning to be able to breathe again. I am probably the least religious person I know but in that moment I prayed for God not to take him. I prayed for a cure. I prayed for all the children and adults of this world to have this allergy taken from them.... and I thanked God for OIT being available to help even some.

Brian required 2 more Epi injections in the ambulance on the way to the hospital alone because as the first injection began to wear off I watched his lips turn blue and him again struggling to breathe.... and again I prayed. Today, 3 days later he is finally stable but we are all shaken. My family could have lost our son, brother, uncle and friend taken from us by a peanut.

 Shortly before Ella began OIT Arthur asked me in passing if  "After Ella is done and safe are we going to become those people?" I responded back with "What people?' and he said "You know the ones that don't think or care about allergies at all and make peanut butter cookies for a bake sale?" and my response back to him was "We will never stop being the voice for these children, for anyone who suffers from life threatening food allergies, we will NEVER stop advocating for them, just because we may get out of the trenches doesn't mean we ever forget about them."

 My voice is loud.... I know that. I also know that many are probably sick of hearing about peanuts but I really don't care. I know that for every person that is sick of hearing about it there is one that wants to learn more. I know that for every person that rolls their eyes there is one that is messaging me to ask about safe snack options for their childs classroom. I know that for every person that wants to tell me to shut it there was another person that painted a teal pumpkin in honor of Ella. For every person who doesn't "get it," there is one that totally does.

When I originally wrote this blog entry it was meant to recount the day Ella completed OIT, her big party the day after, all the new food that she has been able to try and the dance recital she was able to be a part of as a result of completing her OIT journey. However, Ella being able to eat some Ice cream seems trivial in comparison to what we experienced that day with my brother. Now, that does not mean that I suddenly think OIT is not important or that it hasn't changed our lives. What I am saying is that it is exactly the opposite. OIT is not about ice cream or pizza or cupcakes, it is about saving lives. The fact that OIT is still considered "Controversial" or that people think I have used my child as a guinea pig, that OIT is dangerous or not ready for mainstream, the fact that OIT is probably YEARS away from being a widely used practice in allergist offices around the country makes my heart hurt. I can't help but wonder how many more have to loose their life to a peanut before something more is done?

Saturday, October 25, 2014

Allergic shiners and the sniffles.

Ella's allergies have always first manifested themselves in her eyes and her asthma has always first manifested itself through her nose. I found that Ella had a soy intolerance at 9 months old when she started developing horrible dark puffy circles under her eyes after switching to soy formula. In the first year of Ella's life whenever she would get the slightest hint of a runny nose we would end up in the ER or NICU within 3 days being treated for respiratory distress; I swear I still have mild PTSD from those early days of battling Ella's food allergies and asthma. So, when I noticed Ella developing allergic shiners during the first weeks of OIT it made me uneasy to say the least. When I saw Ella develop a runny nose 2 days after starting her second week of OIT I almost had a legitimate panic attack.

It was Saturday morning when I noticed the runny nose and knew that it was the beginning of a cold. I used to always try and think positive, maybe it was just allergies? However, surprisingly enough, Ella has never suffered from seasonal or environmental allergies only food. So I knew when I saw that runny nose she was showing early signs of sickness. Not only was there the issue of controlling Ella's asthma, but typically children with any sort of illness or infection do not tolerate their doses well and either need to drop down a dose or temporarily stop dosing until the infection subsides.

At this point Ella had worked her way up from 1.5 milligrams of peanut flour on her first day of OIT to 6 milligrams of peanut flower on her second and was sitting at 6 mg for her daily dose when we noticed the runny nose. Since she was obviously showing signs of an infection I held off on her normal morning dose and called Dr. Jain to see what he wanted us to do.

Dr. Jain advised us to "pretreat" Ella with 5 mls of Claritin and give her the normal 6 milligram dose as usual and keep a close eye on her, as long as she didn't react then we could continue to move forward with our daily dose for the rest of the week until we went in for updose on Thursday. Ok, so that crisis was temporarily averted. If she didn't tolerate the 6 mg dose, one of use would have been driving 6.5 hours round trip to pick up a smaller dose.

The next issue was keeping Ella's asthma at bay and keeping her breathing at a normal state. In theory this shouldn't be to complicated since she has been on inhaled steroids to treat her asthma since she was 6 months old. Unfortunatly nothing with Ella has ever been easy or gone as it should. I busted out my tool box of natural remedies and loaded her up with Elderberry, Vitamin C and D. All we could do now was watch her and wait.

Sure enough the next morning Miss Ella woke up with a gnarly cough and slight wheeze. The sickest part of all of this is that coughing and wheezing are symptoms of anaphylaxsis and its not like we were feeding her peanuts everyday or anything.

Over the next 5 days essentially every time she coughed Arthur and I both stopped dead in our tracks. On Wednesday night as we were laying in bed I was staring at the ceiling listening to Ella cough from her room and said " I have a feeling we are going to walk into OIT tomorrow and turn around and walk right back out." I did not believe we would be updosing with that cough. But Arthur with his forever optimistic attitude said "lets try to think positive."

We woke up the next morning at 4 am and prepared for the 3 hour drive to Fremont and hit the road. Upon arrival to our OIT office we let the nurse know that Ella was still getting over her cold and had a cough. The nurse went to get Dr. Jain and he came in to examine her. He told us that it did sound like she had mucus in her lungs but since we had driven so far we would in fact try to updose but would take it very slow.

In true Ella warrior form my amazing little girl still killed it on updose day regardless of her cold. The doses went 8, 10, 12, 16, 20, 30 milligrams and then back down to 20 milligrams as our home dose for the next week.  We packed up the girls and headed home.

The next morning in the shower came the shiners. Ella looked as though she had been punched in both eyes. She looked very incredibly tired. It is a look I have become all to familiar with. The evidence of Ella's allergen under her eyes is been a pretty constant addition to our lives since starting OIT. I have had many people ask me "How I feel about this? How do I feel about watching her body try to fight off this allergen?" I also know that many people can't possibly understand or fathom what we have chosen to do here. The short answer is: IT IS HARD. Being a parent of a child with life threatening allergies is not for the faint of heart. Being a parent of a child undergoing OIT is not for the weak spirited. Watching your babies body go through the fight of their life is gut wrenching but it is no harder than watching her go through anaphylaxis, it is no harder than watching her in the NICU for her asthma, at least with OIT we have an end in site... We have HOPE.

With that said I have also had more people than I can count tell Arthur and I how amazing we are, how lucky Ella is to have us as parents. People tell us all the time these amazing outrageous compliments. However, what I know is that we are not doing anything special. We are not doing anything that any other parent wouldn't do for their child. Our life managing Ella's health problems is obviously not ideal and it has been horrible but we are not martyrs for the cause. Arthur and I are simply parents just like any other than love our sweet little girl to the moon and would do anything to protect her and are learning like any other allergy parent out there how to navigate through this crazy life of food allergies.

Monday, October 6, 2014

Peanut Flour

The morning of Ella's first OIT I woke up at 3:30 am to get everything ready that I couldn't do the night before: loading the car and packing lunches (we have to bring our own safe food even to OIT.) We had to be out of the house by 5:30 in order to make it to Fremont by 9 am. I woke Arthur up at 4:45 and went to finish my coffee and feed the baby. Arthur went to get Ella up and as he walked out of her room holding her she reached for me and said "I sleep good mommy". I grabbed her and she put her head on my shoulder and I said " Are you ready for the first day of your new life?" I looked at Arthur and he had that look. It is so hard to describe, its just a look of a father that loves his daughter but is filled with worry all at the same time. I hate that look... It makes me uneasy.

Arthur is the calm one. Arthur never loses his cool, he never gets worried or stressed, he doesn't take much very seriously and he certainly never panics. I have only seen him panic one time in the 3 years I have known him and it was when he thought I cut my finger off when I was 8.5 months pregnant with Maxine. If you know Arthur you know what I am talking about, it is just in his nature to be care and worry free. If you know me, well... you know I am the exact opposite. The only times I have ever seen worry on his face is with Ella, with his first born, his sweet baby girl. Probably the only thing I have ever seen him take seriously is Ella's allergy. He has never doubted for a second that it could take her life and that it could take her from us. You see, Arthur was with me that night when Ella was still in my belly, when we had no idea what the future would hold for her and when I got the call that my brother had collapsed at work and was being rushed to The Queen. Arthur stood there and held my hand as the doctor told me that my brother Brian had suffered an allergic reaction, that it was a very close call and  "if he got here 5 minutes later" they don't know that they would have been able to save him. Arthur has sat up with Ella on his chest in the NICU for 8 hours straight through the night to help keep her oxygen levels up. Arthur knows. Arthur has never doubted me in my attempts to heal her. So when Arthur is uneasy it makes me uneasy.

So we loaded both girls into the car that Thursday morning and as I was shutting the door I felt a few sprinkles of rain on my head. By the time we had left our street it was pouring rain. REALLY?! We are in the worst drought in the history of California and the universe decides to give us torrential down poor on this day of all days? I felt like it was some kind of sick omen. Am I bringing my daughter to be slaughtered like a cow? Then my dear friend messaged me and said "Think of the rain as washing away all the old struggles and worries, this is your new life." O.K.... I can work with that.

We made it to Pinole before I started having my panic attack. The combination of the rain, traffic and the idea of feeding Ella peanuts finally took its toll. I started to get hot, couldn't breathe and got light headed. Luckily Arthur is as amazing of a husband as he is a father and was able to talk me down with a combination of humor and zen music on the radio. It is going to be ok. It was going to be alright.

 The traffic was absolutely horrendous and it took us just under 4 hours to make it from Sacramento to Fremont. We arrived 30 minutes late and began loading all of our stuff into the office. We were quickly moved into our room for the day, a room about the size of any standard doctors office that you see every day. Arthur, myself, Ella and Maxine in an 10 foot by 10 foot room for the next 9 hours.... this should be fun!

The nurse took Ella's height and weight along with her vitals and explained the process to us again. They would start with the lowest possible dose of peanut protein mixed with a cellulose powder and work up from there. We would start at .01 milligrams of peanut protein which is about the equivalent of a grain of sand. After that, every 30 minutes we would take Ella's vitals (blood pressure, temperature, respirations and O2 saturation) as long as all her vitals were normal we would continue to up the dose until we saw signs of a reaction. At whatever dose she reacted to we would then go down one dose and that is what we would be sent home with to feed her ourselves until the next week. Our nurse Heather left to prepare the peanut flower and Arthur looked at Ella and said "Ella show me where your throat is" Ella grabbed her throat and he said "Ok, good girl" Yes. We are going to feed her something that could make her throat close... and she is barely two years old. I mean, come on, she still uses a binky. Can she tell us if her throat is itchy? If she feels sick? We have to trust that she can and most importantly that we know our girl well enough that even if she cant we will know for her. Ella was still wearing her footy pajamas from the night before and while heather was preparing her first dose I looked at Arthur and said "I am stripping her down, we need to see her skin."  He agreed.

Heather came back with Ella's first dose of peanut flower and between Art and I you could cut the tension in the room with a knife. I seriously don't think either one of us took our eyes off of her for the next 30 minutes, they were glued to her tiny little body. She did fine. Heather took her vitals and went back for the next dose, the equivalent of two pieces of sand. Dose two in. We continue to watch. I looked over at her and she had a small red patch on her back. Not a hive just a read spot. Heather came in to examine her and take vitals and when she saw the red spot she decided to go get the doctor. When Dr. Jain came back the red spot had started to subside, he decided to just back down to her previous dose and watch again. Dose three in (which was really the same as dose one.) The red spot had gone away but then came back in a different spot on her back and Dr. Jain decided to give 5 mls of Claritin and go up one more dose to .03 milligrams. We never saw that red spot again that day. Over the next 7 or so hours we were able to slowly work our way up to 2 whole milligrams. Now, that sounds like a lot but to put it into perspective, our end goal is 4,000 milligrams. We are talking about the beginning doses of peanut not even being able to be seen with the naked eye.

After a very long day of the four of us becoming very close as a family (just imagine being in a doctors office room with a 2 month old and a 2 year old for 9 hours) we took our home doses and packed up the girls at 6 pm to make the 3 hour drive back home. Ella was asleep before we even left the parking lot and we finally pulled into our driveway at 9 pm that night.

It was now our job to administer Ella's doses at home and continue to monitor her. She is supposed to have a rest period for 2 hours after her dose as well as shying away from extreme heat or physical exertion. Did I mention she is two? For the most part we have been able to keep her calm in the mornings by planting her in front of a few episodes of Caillou for 2 hours. In the first week of home doses the main issue we have experienced was stomach upset. I will spare you the details. On the Saturday following Ella's first OIT day we took her to a housewarming party where it was very warm and she was running laps through the house. I quickly noticed her face turn beat red and what appeared to be a hive on her cheek, this was 6 hours post dose. I administered her Benadryl and we left. I sat in the back seat of the car with her and by the time we got home her face had gone back to normal. We haven't taken her out of the house since. The following day I noticed that Ella had developed allergic shiners (a term used to describe dark circles under the eyes of children when they are suffering from allergies.) I pointed them out to Arthur "She has allergic shiners" I said. Arthur had that look again, that look of worry. Arthur is just as aware as I am that Ella's tiny little body is going through the biggest fight of her life. What we also both know is that while it may be hard to go through now, while it may be hard to watch her little body fight, we are giving her the best possible chance and overcoming this disease. We have faith in this process and mostly we have faith in our sweet little girl.

Friday, September 26, 2014

Finding Dr. Jain

The most important issue in the forefront of my mind since Ella's initial diagnosis has always been sending her to school. The thought of sending Ella to school makes me want to vomit.Things are all fine and dandy at the age of 2 when she is never farther than 5 feet away from someone who loves her and knows how to protect her, but the idea of sending a 5 year old to school where they serve peanut butter and jelly in the cafeteria everyday and expecting her to navigate her own safety is just to much. It has always been something I found completely ridiculous and wanted to see changed. Then last summer when Ella was barely a year old Arthur came home from work and told me about a doctor at his work who lost his 13 year old daughter over the weekend after she bit into a peanut butter laced rice crispy treat at summer camp. Natalie Giorgi. Natalie changed our lives. Natalie had known to take all precautions to keep herself safe and she still died from her peanut allergy. Natalie's parents were with her and she still died from her peanut allergy. Natalie's father was a doctor, he performed CPR and administered 3 Epi-Pens himself and she still died. Natalie's story made national headlines and shocked me to my core. How can you do everything right and still loose your child? I had to do something. I had to take action.

I decided to use to create a petition to make a state law that would require all California schools to become peanut free. That made sense to me, it was something I could possibly accomplish. So, I wrote up my petition and went to social media to spread the word. I was very aware that my friends list on Facebook wasn't going to cut it in getting the word out the way I needed it to. I needed this petition to go viral. A quick search of Facebook found me the group Parents of Kids with Severe Peanut Allergies toting an impressive 8,000 members. Who better to spread the word than parents just like me. I requested to join the group and as soon as I was approved I shared my petition. I ended up with close to 2,000 signature but ultimately I never gained the traction I truly needed (again that's an entirely different blog.) Regardless, I found myself in an amazing group with so many parents that truly understood me. Through the process of all of this I kept seeing these posts about Oral Immunotherapy or OIT which was a new and promising treatment for food allergies. The basic concept is that of allergy shots. You introduce the allergen in the smallest possible amount and then work up until the body creates a tolerance. Voila, no longer allergic. How did I not find this in my previous research? I mean I have reached the edge of the internet researching food allergies. I could write a book. How did I miss this? Well, to start OIT is still in the infancy stages and is still being studied in research programs across the county. There are less than 20 doctors offering OIT in the entire United States. I inquired more on the posts in Parents of Kids with Severe Peanut Allergies and was eventually referred to the FB group Private Practice OIT. Private Practice is a group of all families that are either doing OIT or beginning the process of starting OIT. After becoming a member in that group I found the files section that listed every doctor in the country that actually offered Oral Immunotherapy. Much to my surprise there was actually a doctor in Sacramento offering OIT through Mercy Medical Group. We live in Sacramento. What are the chances?

Sitting in my car outside my house I made the call to this miracle working allergy healing doctor in the town I live in and said " I need more information on OIT." The doctor was out that day and I left a message for her to call me back. Hope. I finally felt some hope, I could taste the hope... It was so close. I waited. I waited 2 days with no return call before I called back and left the same message... I waited again. I waited 2 more days and no return call. I called again. Finally the following Tuesday while I sat waiting to take my gestational diabetes test for Maxine I got a call back. I was informed that this particular doctor does not offer OIT for children under the age of five years old. Crushed. She suggested that I contact Stanford to try and get Ella into their clinical trial. Then she said something I will never forget and may very well be one of my proudest moments as a mother " I am sure if you are as persistent with them as you have been with me your daughter will be just fine."

Back to Facebook. I posted in Private Practice about my disappointment about the doctor here in Sacramento and I was informed that there was in fact a doctor in Fremont that offered OIT to children starting at age two: Dr. Jain.

At this point it was almost exactly 1 month before Ella's 2nd birthday. I called and yes, they do in fact offer OIT to 2 year olds. I spoke to them about insurance and what not and scheduled the appointment for a month out. On a side note I am 8 months pregnant at this time so I let them know they only way I would miss this appointment was if I went into labor. Well, wouldn't yah know that 3 weeks later at my 38 week appointment my doctor decided to schedule my induction for that Friday the day of Ella's consult. This would be the first time in Ella's entire life that anyone or anything would take priority over her and her allergy. I rescheduled the appointment for early September and on July 27th 2014 we welcomed Ella's baby sister Maxine Marie McCauley into the world at 10:07 am.

Fast forward 6 weeks to September 11th.... Yes, September 11th. Fitting. We packed up the girls and started the 3.5 hour trip to Fremont to meet Dr. Jain. If any of you happen to have a newborn and a 2 year old then you know how much fun that trip was... Our consult with Dr. Jain was actually quite uneventful. I had researched the process until I wanted to rip my hair out and was already secure in my decision that if he would take Ella then we would be doing this treatment. "Ella is a great candidate" he said and we responded with "When can we start?" and that was that. We booked out our appointments for the next 12 weeks and would be done in time for Ella to eat 5 peanut M & M's by Christmas day.

Now comes the fun part. Insurance. OIT costs roughly $10,000 at $200 an hour to be payed up front at each 8 hour appointment once a week. Many insurance companies don't cover it because it is seen as an elective procedure. Our insurance did not cover it. I will leave out the details of the fight that ensued on the drive home that day but all I can tell you is the only thing we agreed on was that she was getting this treatment regardless of what had to be done. We came home and started looking at loans, retirement accounts etc. We had a few more fights and at one point I may or may not have started throwing things out the front door. Then, like a miracle.... Maxine to the rescue. Maxine's birth was a life changing event that allowed Arthur to change his insurance. YES. All was right in the world. Ella will never get to live down that her little sister paved the way for a new life before she could even hold her head up.

The first thing I did once the dust settled was look at pre-schools. Ella is going to get to go to pre-school. Ella will get to go to the park and eat ice cream and go to baseball games and birthday parties. Ella will finally get to do every single thing that every other child her age gets to do. The sky is the limit.

Once the initial high of the thought of our new life wore off the reality set in. We are going to feed her peanuts? We are going to feed her the one thing we have spent the last 18 months making ourselves crazy trying to protect her from? We are going to feed her the one thing that could kill her in 2 minutes or less? How can we do this? I don't think I can do this. Panic. I lied awake that night staring at the ceiling running through all these questions in my head but somehow as quickly as the panic came the rationale started to take over. We have a choice. We can continue to live in fear every single day of our lives that she will accidently be exposed and taken from us.... or.... we can choose to walk in faith and put our trust in Dr. Jain. We can choose to trust this man with our most loved gift and trust that he will cure her. Yes, we are going to walk in faith. We are going to feed her peanuts, peanut flower to be exact.