Our long awaited diagnosis... almost there.

I chose to stop writing our story because it got too complicated.  I chose to take actions in to my own hands and become my child's doctor.  At first, this made me furious.  I am a nurse - not a doctor!  I shouldn't have to do this!  But then it hit me, "If I don't, who will?"  Our "baby" is now a wild 2 1/2 year old boy.  Over the past couple years we have seen over 10 doctors, and had 5 specialties going on simultaneously.  The diagnosis:  "Fever of unknown origin".  That's all anyone could come up with.  Until one glorious day when I was finally referred to an Infectious Disease doctor - we will refer to her as "Dr. J", but to me she is my angel. 

Dr J. is a pediatric ID doctor with John Hopkins.  She has been ranked the #1 pediatric ID doc in the nation for four years.  I researched her before our apt, I was a bit star struck, knowing I was in the presence of greatness and wanting to impress her with my research and not sound like the crazy mother I really am.  Our first appointment together was LONG.  Over 2 hours of talking, head shaking, furled eyebrows, studying of labs, and listening to the chain of events post vaccines and the weekly to monthly cycle of fevers.  She made a plan - she instructed me on exactly the type of chart she wanted me to keep on his symptoms, and asked that I print pictures of our son when he is sick.  She agreed to stop all vaccines and then did the ONE thing nobody else had ever done, or mentioned.  She handed me a book of info on rare genetic fever disorders and told me to start reading.  BINGO. 

(Gene info on the Fever Disorders)

I'll be honest - at first I ignored it.  She told me the testing was extremely complicated and expensive.  She told me less than 5% of the population has this condition.  I focused on photos, charted daily on a calendar, color coded his symptoms, gave him meds when needed, and kept praying.  He got really sick one week and he was starting to talk and he laid on the couch while the rest of us tried to sit and eat dinner.  I was a mess, my then 5 year old son was fearful and sad, and my husband was visibly upset.  Then the baby muttered "mama, help me".  That was it.  I broke down, ran to hug him and decided enough was enough.  I convinced myself in that moment that I didn't need sleep - I would use the time to research and find something, anything, to help him.  I picked up the info on that rare genetic fever disease.  And so it began!

(To show that our son is "lifeless" during a cycle.  Unable to keep his eyes open, unable to walk, or stay awake/roused.  We now understand that its painful to walk due to swelling in the joints and his head hurts from the swelling.)

There are 8 known fever diseases. All of them are being actively studied at the NIH in Maryland.  All 8 of them are classified as Auto-Inflammatory diseases.  The body is in a constant state of inflammation, and if ANYTHING enters the body, the body OVER-reacts to correct it.  Hence the insanely high fevers, the swelling in his face, eyes, joints, etc. 

One of the diseases is called HIDS (Hyper IgD syndrome).  HIDS starts with one common thing.. vaccines.  I ended up joining the Auto-inflammatory alliance and am now a part of the SAID organization (Systemic Auto Inflammatory Disease) and most ALL parents and adults report that their cycles and symptoms started once the vaccines started.  I must be clear here:  Vaccines didn't CAUSE this disease, but it lays dormant until vaccines start.  What does that mean?  And now the questions start again.....

Most of today's vaccinations are GMOs (genetically modified).  In the UK, the flu vaccine VAERS form clearly states this in bold writing.  But not here in the USA.  If gene mutations are starting to become more common in our human population, then what happens to our bodies physiologically if ingesting (and being vaccinated) with genetically modified food and vaccines?  And if the gene sequence in something like a vaccine literally causes reaction in someone, than what can be deduced?  That the genes don't mix?  I'm not a geneticist.  I wish I was now!  Let me share what I have been taught on vaccines from the top notch specialists:

Chemicals in the vaccines CAN be detoxed.  Bentonite clay is awesome.  Three of our doctors recommended that we use clay baths to rid our little guy's body of all metals that are used in the vaccines that his body couldn't process.  If your body isn't efficient in detoxing, the metals move through the body and rest in the kidneys, liver, pancreas, and spleen.  By sitting in the bath for 10 minutes every few days for a couple weeks, the clay draws the metals out of the organs in to the blood stream, then eventually out of the skin.  Whoa.  One doctor told me that her patients literally see green rings floating on the top of the bath water because the metals were so high.  Our son got a pretty nasty rash across his mid section after we did this, obviously his body overreacting to the metals trying to come out.  Yuck.  (One doctor reported that her kids with behavior problems like ADD/ADHD and even Autism had huge improvements in behavior after using the bath, which is the main reason studies are being done on chemicals causing these diagnosis.) 

(Doctor recommended brand to detox vaccine metals)

Live Vaccines CAN and DO shed.  Injections like the MMR and Varicella are live vaccines.  If injected in to the body, the live form of the virus is supposed to hit the system and cause the body to create an immunity.  When these live viruses shed, its through the feces, posing little risk to others.  The nasal vaccines, like Rotovirus and the Flu MIST, shed out in to the open when the person sneezes, coughs, etc... this is a huge concern for those who are immune compromised because they can't be around anyone vaccinated for up to 28 days.  According to the CDC, these vaccines shed up to 11 days, but they recommend staying away from immune compromised patients for 21 days.  (yikes!) 

My son's reaction to vaccinations was real.  Yup... real.  Despite what our original pediatrician said.  My mother's intuition was correct and I wish I would have fought for it harder.  Instead, I let the nurse in me trump the mom in me and I allowed the doctor to "order" me to do something to my child that I knew wasn't right.  Its my biggest regret as a mom so far.  With each round of shots he got worse.  With the MMR, he ended up covered in hives, had a fever of 105 for 12 days, ended up on prednisone and in the hospital 3 times.  It took THAT to get me to fight harder, to change doctors, to move on.  Why I didn't do it after his 2 months, then 4 months, then 6 month shots is beyond me now.  The changes to his body are permanent, I can't undo it.  I can't reverse it.  The argument back then was me calling it an "allergy" to vaccinations.  And the immunologist studied this on our son, and ran blood titers to see if he had gained immunity (which he hadn't from the pneumonia vax).  He refused to call it an adverse reaction until he literally gave my a son a tiny dose of pneumonia vaccine in to his thigh and watched.  My son's leg swelled, broke out with a rash, and it lasted 5 days.  Only THEN did the doctors all write in his medical charts "Medically unable to be vaccinated".  They didn't take my word for it, they didn't take my logs, the records, the pictures...it had to be shown in the office.  This burns me still.  Long story short, our son is not allergic to vaccines, he is unable to process vaccines do to his genetic make-up, and it altered him for life. 

I have learned that nothing compares to the mama-bear.  As a nurse, I didn't want my son on daily steroids so young.  His organs are already damaged, why make it worse?  Not a single doctor offered another solution.  Through research and with help from the SAID group, I have found natural anti-inflammatory life-style solutions.  Tart Cherry chewable tablets have literally changed our lives.  Wheat free diet, Vit D, etc... All these things help my son keep his disease in check.  The studies on Tart Cherry and my 3 months of charting has led our beloved Dr. J to do her own research and learn what an asset it is.  The 72 hours I spent on constructing charts to cross-reference the 8 genetic diseases proved so successful that our insurance company paid for our testing.  Dr. J was so moved by the research she offered me a job.  (Not that I can work outside the home yet, but that made my day!)

(Just a day in the life at our house.  His medical record, my research, my charts, and calendars.)

I guess the point is, fight like hell for your kids.  Fire doctors if you need to.  Stay close to the good ones.  (We finally have an amazing team after 2 years)  Remember that you are your child's only true advocate.  Don't forget that you pay a doctor for a service.  Don't let a doctor tell you what to do if they aren't listening and your soul tells you they are wrong.  Keep looking for another opinion, keep researching, keep asking questions, don't settle.  If your child is showing symptoms that something is wrong, something is.  Keep copies of every appointment and lab, etc, on your child because one day you may need it and suddenly it may "go missing".  (yeah...that happened)  Try everything possible to keep your child naturally healthy.  As a nurse, I totally believe in medication and hospitals when its needed.  I just believe that we don't try harder to find natural solutions first.  If they aren't offered to you, don't give in.  Research it yourself.  Seek help. 

What life looks like for us now: 
Our son has a disease that won't go away.  Its handled with treatments that help keep inflammation down and the meds (steroids) are not great long term.  But without them his organs will eventually deteriorate and our main issue has been the concern over brain swelling.  I have asked to check his CRP and Sed Rate levels every 6 months to check his inflammatory markers while keeping him off of daily steroids.  We use the diet and tart cherry daily, and prednisone as needed during his cycle.  Since starting the diet, etc, he hasn't had a temp over 101.  This is huge!  His CRP was normal for the first time in his life this month.  All with diet and natural remedies.  I will use steroids to prevent internal swelling, brain swelling, high fevers, and so on.

 (Photos to show the doctor his facial swelling.  This is the most concerning of his cycles because the fear is brain swelling.  When the eyes are involved, the brain is typically involved, which is when prednisone is needed immediately to prevent permanent brain damage.)

The NIH is following and studying kids and adults with these mutations.  As soon as we get the exact mutation they will follow our son for free, for life.  When new treatments are found they will inform us.  They will hold phone conferences with our local doctors every 6 months to help teach our doctors how to treat him.  Our dear Dr. J is 100% on board with being our advocate and we are so grateful.  She is, after all, the only doctor that even knew about these disorders and related them to the vaccine reactions. 

We are still on a learning curve when it comes to public places.  He gets so sick after visiting church and we think its his body trying to fight off whatever comes his way.  Our oldest son had to stay home from school for a week post public school vaccines due to shedding and risk of bringing it home.  We use a medical mask at doc apts and hospital visits to help.  And I truly love being a part of the world-wide community to share and help each other, or just pray or cry if things are hard (there are about 600 people in the group world-wide).

(The "boo-boo bag" and his big brother are the best medicine at times.  And more than anything, love and hugs are all we can do for him.)

 

We should have the gene mutations pin-pointed by the end of March.  Then we will start the process with the NIH.  This started as a vaccine debate.  With a vaccine FIGHT.  We started this process with a happy, great sleeping, healthy and big baby boy.  Once the rounds of vaccines started, he got sick.  Plain and simple.  Why it has been so hard to figure it out is beyond me.  Why doctors and people don't take vaccine reactions seriously is horrifying.  Let me remind you, our oldest is fully vaxed, never had the slightest reaction, and is totally current and up-to-date.  But we are not a "one-size-fits-all" population.  What works for some, or most, doesn't work for all.  And you better believe that I will raise this little one to never allow a child of his (God willing) to vaccinate his children, because the risk of him passing his genes down are 50%.  We will be "that family" that puts their foot down, that fights the negative reactions, that fights the schools, that holds back the anger from other people's eye rolling.  At the end of the day, I have children to fight for, and I wish I had started fighting like a champion much earlier on.  God knows this sweet and wild 2 year old is fighting daily!