Prayer Request

Things have been a little upside down lately.  I don't know how to describe it.  Erik and I are both feeling the push to ease up a bit with B.  Decrease supplements and let him try some foods that showed up on his IgG test.  We are awaiting the results of his new food panel.  I really hope he's lost some of those sensitivities.  Reducing supplements has caused a slight regression and more choreiform movements in B.  But, this month has been less stressful for all of us without having to worry about taking them after every meal and in the morning when he wakes up.  With the regression, we realize the supplements do play a role in his healing.  We will slowly be adding them back in.

What we keep coming back to is this:  Where is the line between quality of health and quality of life?  With B, it is a tightrope.  One step in the wrong direction and we either fall on the side of regression or the side of being stressed out nonstop.  In three years, we have yet to find the middle ground.

I'm handing B over to God.  I want Him to lead and we will follow.  We know we will be moving in another direction with his care.  That may mean a new biomedical doctor, or a new method of treatment used in conjunction with the care he receives from Dr. B.  I am so thankful for everything Dr. B has done for our son.  I truly believe in the biomedical approach.  However, at this point, we are not feeling peace about continuing on this path alone.  If he regresses with the removal of supplements, how much healing has taken place?  I want to get his body to the point that it can make or absorb the very things the supplements provide.  Am I being impatient?   Every day B tics, every day he stims, every day he melts down is a day his brain is inflamed.  That scares me.  Is there something Dr. B is missing?  Something an extra pair of eyes will uncover?  B is not gaining weight again.  Every pound he gains, he loses again.  I want this addressed.  Dr. B has brought B into a better place.  For that, I will forever be grateful...but I feel like there's a another step that needs to be taken.

So, if you are reading this, I'm asking that you pray for us.  Pray for God's guidance and for us to be alert to His leading.  Also, that we will have the funds to do whatever needs to be done.  Please pray for B...for healing.  Thank you, friends.

The One Where I Lose My Cool

Yesterday was good.  Tonight, I'm struggling.

It's just hitting me.  The enormity of it all.  All the information to wade through.  All the opinions that seem to clash with each other.  One doc says a million supplements and diet changes.  Others say antibiotics and ibuprofen (that B's system can't tolerate).  Then there's IVIG ($$$)....repeatedly.  Or how about homeopathy.  Have you tried GAPS, or perhaps the low oxalate diet, SCD?  Silver?  Belladonna?

I listen to other PANDAS parents.  Doctors saying they don't believe in PANDAS...but here try this band aid psych med.  GI docs telling parents it must all be in their heads when their children have severe abdominal pain.  Children misdiagnosed as Tourettes and put on medications that exacerbate the PANDAS.

Bladder issues.  Food allergy?  Inflammation?  Information I read today: The basal ganglia controls the internal bladder sphincter.  PANDAS attacks the basal ganglia.  It's the SAME thing that happens to people with Parkinsons.  Wonderful.  Do you know what else is associated with Parkinsons?  Aluminum poisoning.  All I know is that my child was potty trained at 2.  He'll turn 6 on Saturday and he's not anymore.  AND THAT IS NOT OKAY!

And it feels like this world goes on and doesn't care about all these hurting kids.  They are brushed under the rug.  We numb ourselves with pop culture, food, prescription drugs, idiotic right verses left politics.   The apathy is astounding.

 Autism, ADD, ODD, Allergies, Asthma, Juvenile Type 1 diabetes, Juvenile Rheumatoid Arthritis, Eczema, GI issues, PANDAS, Childhood Schizophrenia, Food Allergies.  When did this become the norm?  When did it become okay?

Erik and I were on a radio program and the topic of how to approach all this came up.  My answer was that I'm really nice about it because people won't listen when you're angry.  The truth is, I AM angry.  I'm angry at the medical establishment that turns their back on our children.  At doctors who say "I don't believe it" when they are too proud to admit they don't understand and haven't taken the time to research.  I'm angry at our insurance policy that specifically states that it will not cover PANDAS.  I angry that the CDC recommends an untested vaccine schedule.  I'm angry that drug companies are allowed to pass off "safety tests" of individual vaccines without a true placebo.  I'm angry that this doesn't seem to bother anyone until it's too late.  I'm angry that we are perfectly okay with throwing babies and young children under the bus for the good of everyone.  I'm angry that I can't seem to hold a trivial conversation anymore.  I'm angry that there are groups of people who write hateful things about parents in my shoes because we utilize biomedical treatments.  I'm angry that we have to because the medical community has turned their backs on our children.  I'm angry that in the big scheme of things, my child doesn't matter to this world.  I'm angry that friends who once trusted me, consider me crazy now because I researched my son's condition and came to an unpopular conclusion....confirmed by lab results.  I'm sad that I have to watch babies close to us get chronic ear infections, diarrhea, eczema, allergy shiners, constipation....and I know the parents don't want to listen to anything I have to say.  So I have to watch them travel the same path.  I'm angry that my child has to endure so much.  Yes, I am ANGRY!

But I am not angry at God.  He has lifted us up and carried us through this.  We have not waded through these waters on our own strength.  A veil has been lifted from my eyes.  I am no longer oblivious to the evil in this world.  It makes me so thankful that God has prepared a place for us.  A place where there is no evil, greed, selfishness.  I am that much more thankful for His goodness and mercy.  All this ugly is a blink of an eye...but our eternity is beautiful.  I'll hang my heart on that before I turn in for the night.  

Pull up a Chair

Just A Little Update

For a month now, we've tried something new with B.  Call me paranoid, but I don't want to jinx it, so I'm not fessing up on my blog.  However, if you want to ask me in person or shoot me a message, I'll be happy to divulge that information.

Last month, I was looking through my previous posts and I realized B had only gained one pound all year.  One. Bringing his total weight to 35 lbs.  He's almost 6 and fairly tall.  He does have my small bone structure working against him, but still, one pound in a year?  He eats normally and sometimes more than I do.  He's just not absorbing his nutrients properly nor metabolizing fats sufficiently.

In just one month of this new thing we are trying, B has gained 2.5 pounds.  In the first week he gained 4!  We skipped a week while we were at Autism One and he leveled off and even lost a pound.  But we continued this new thing when we returned.  His sweet little face is filling out and he's just looking healthier.  This 'new thing' is supposed to help the body absorb nutrients.  I think it's working!

This week has been very good.  B's tics are minimal and we noticed a difference in his speech today!  He wasn't dragging out his words or taking a long time to get his sentences out.  His speech had been affected for months.  I don't know if it's decreased inflammation or the fact that his body is getting the nutrition it needs or both.  We are very happy about this!  He asked me today, "Mommy, am I talking fast?" :)

I really want to get his IgG test redone in a few months to see if some healing to his GI system has taken place. Wouldn't that be wonderful!

Hurdles

Today, we helped B's Nana with a garage sale.  Some giant hurdles were leaped with this sale.  The first: B was able to let go of some toys.  This is huge for him.  He has emotional attachments to almost everything.  He asks me take pictures of his jammies when he outgrows them.  He saves torn art projects and broken toys.  The fact that he let people walk off with his toys was a big milestone.  I was very proud.

The second hurdle: he greeted the customers.  He walked over them and explained how toys worked.  He didn't hide inside or behind me.  He drew pictures for them.  He reciprocated conversation.  He didn't stand in the front yard shouting, "Who wants to buy a picture?"  like his sister.  :)  He was polite, and helpful, and very brave.  Social situations are not usually his cup of tea.

Two women stopped by the sale with 3 children.  One little boy of about 3 or 4 kept darting from his mom, toward a certain table.  His mom took an item out of his hand, he picked it up.  She said "no" and took it from his hands again.  He began to cry loudly and picked it up.  I empathized with this mom, remembering a younger B.  I remembered when we tiptoed around every situation because it would set off a meltdown.  We were constantly trying  to be aware of the triggers.  When he would have a meltdown, nothing would calm him.  We would leave wherever we were and go to the car, or home. or somewhere B could be alone with us.  A place without a lot of people around.  It didn't hit me until those mothers and their children left that that little boy had autism.  I mentioned something to Erik and he said, "Yes, she had a 'walk for autism' shirt on."  I looked at B, sitting quietly, printing his name on a portrait of himself sitting in a race car.  I realized then and there how tall that hurdle was....and he cleared it.  From numerous meltdowns...even hourly meltdowns, to very few.  Maybe one, if that, a day.  They are shorter and milder than our days of hour long screeching over something that seemed so minute to us, but was monumental to him.  He watched that little boy, not with a puzzled look, but with a look of understanding?  wonder?  interest?   When the little boy left, I explained to B that he had autism and it made it hard for him to calm down.  B replied, "Oh.  I get it.  Mommy?  When the lights hurt my eyes....is that autism, too?"  He understands more than I ever give him credit for.

People have asked me if B has autism and I never know how to answer that question.  His official diagnosis is PANDAS.  At the conference last week, this link was cleared up for me...sort of.  Dr. Rosario Tifeletti explained PANDAS as following a pattern:  Neurotypical----->PANDAS---->PDD-NOS---->Autism.  Had we taken B to a doc who was not familiar with PANDAS, I believe he would have been diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified).  He certainly fit the mold at that point in time (before biomed).  PDD-NOS is on the autism spectrum.   We also learned that it is important to decrease the brain inflammation.....or B may regress back to PDD-NOS or further on autism spectrum.  Erik learned at another lecture that the key to reducing the inflammation is healing the gut.  It all comes back to increased intestinal permeability or "leaky gut" and it's connection to brain function and overall inflammation in the body.  I probably sound like I'm talking nonsense right now.  Goodness knows I didn't understand a lick of it until I started reading the medical journals and studies.  So, we have to heal the gut.  We have to.

These past few months, B's tics have been more severe and continuous.  His speech has been affected...which I mentioned in another post.  While he used to be quick with an answer and very articulate, it now takes him a long time to say what he wants to say.  He's still articulate, it just takes him longer and he drags out his words.  Pair these things with the bladder issues (the number 3 reported symptom of PANDAS by the way) and we've got our work cut out for us.  Heal the intestinal lining and reduce inflammation.  That's what we have to do.  We are going to embark on a new protocol for this (in conjunction with biomed...but fewer supplements).   I'm a little nervous.  I don't want to set him back, but I know we need to do something different to move us forward.  Please pray wisdom for us.  That Erik and I follow God's leading...that we hear Him loud and clear.  I've known we've needed to do something different for a while now, but I've been hesitant to change what we are doing even if it's just momentarily.  I've been waiting for the okay, but I think this time God is giving it to Erik and I need to trust him.  B's jumped some tall, tall hurdles....this is will be his biggest one yet.

The one that will more than likely be erased.

What happens when you remove dairy from your diet and then have a dairy binge?  Brain fog.  I really shouldn't be allowed to type right now.  It's that foggy.  But, the house is quiet.  The kids are at my mom's because it's that time of year again.  Time to get to Chicago and meet with old friends and gain new friends.  Hundreds of parents walking similar yet different paths.  We all get each other....nobody thinks we're crazy.  Annnnd there are so many medical lectures and advocacy lectures.  Real doctors, trail blazing doctors ready share information with us.  Autism One.

 I want to learn everything I can about PANDAS.  That is my goal for this year's conference.  Compared to other kiddos with PANDAS, I think B is doing very well, extremely well.  However, his tics have become more prevalent and an issue that we have been dealing with for quite some time has gotten worse.  I'm just going to lay it out in hopes that another parent going through the same might have an answer or may need to realize it is a PANDAS symptom.  And, when B gets a little older, I'll erase this post for his privacy.....or when this dairy high wears off and I realize that maybe this wasn't a good idea.

B has been having some problems with bladder control.   He's been toilet trained for almost 4 years, so it's kind of a bummer for him.  Bed wetting has always been an issue, but instead of small accidents, we've been having to change the sheets often.  He's been soaking through 2 layers of nighttime pull ups.  It's not uncommon for kids his age to wet the bed, so we just thought we'd wait it out.  However, now incontinence is affecting him during the day.  Strong urgency and frequency.  He's not happy about wearing a pull-up  when we travel, but just 40 minutes in the car has resulted in accidents...and this after stopping at the restrooms multiple times.  Accidents have been happening at home, too.  I posed this question on a PANDAS forum and I received a few responses.  One is that it is a bladder tic.  That would make sense considering his tics are frequent now.  The second was PANDAS attacking the nerves.  This theory scares me a little.  A few parents commented that their children were losing hearing function and diminished sight, as well.  I'm not going to dwell on that until I can talk to his doctor.  Another parent mentioned food allergies.  Well, goodness knows we've got a few of those!  I might ask his doc if he will retest B.  It's been 2 and a half years, maybe some things have changed.  Anyway, I'm really hoping this topic will come up at one of the sessions at Autism One.

We also may look for a second opinion.  A1 is a great place to meet the docs and get a feel for how they treat their patients.  While we love Dr. B and everything he's done for us, it may be good to get another perspective as far as treatment.  I feel like there is something we are missing or overlooking with B.  A new set of eyes may help.  Prayer would be greatly appreciated.  Thank you!

Now, I'm off to take some activated charcoal to counteract the effects of my dairy consumption.  I don't think I'll be doing that again anytime soon.  It makes me loooopy.  Kind of the way B would zone out after consuming milk.

Words

Selfish.
Dangerous.
Crazy.
Ignorant.

Words that have been used to describe me for ceasing vaccinations for my children.

Unfit parents.
Not based on science.
Can't accept their children for who they are.  Unloving.
Dangerous.
Munchausen moms.

Phrases used to describe biomedical treatments and the parents who choose them for their children.


These words stick.  As much as I'd like them to roll off my back, they sting.  Mostly because the people saying them cannot see my heart, or my child.  My child is nothing to them.  Just an anecdote...that's another one.  My child's life is summed up as 'anecdotal' as in "That's just anecdotal  you should trust in the science."  To me, he is my world.  We live the anecdote.  And we do have the science to back us up if people would take the time to read it.  But that is not what this post is about.  I just wanted to give you, dear readers, a glimpse of the weight I have been carrying on my shoulders.  All those heavy judgments.

B needed a new primary care doctor.  I have been hesitant to take him back to a strictly allopathic practice.  To place that trust in somebody again...I can't even tell you how hard that is.  I dragged the weight of those judgments into a family practice last week.  I wanted to interview a physician to see if she was the right fit for our family...especially for B.  I don't know why, but to get this interview, I had to fill out my health history and get weighed and all that other preliminary stuff.

The nurse and I started off on the wrong foot almost immediately.  She asked me to step on the scale and I was perplexed.  "Is this necessary?  I'm only here to speak with the physician to discuss the possibility of primary care."  She looked unamused and said, "Yes. You have to do it."  Then we went into an exam room.  She asked for my health history and asked for any medications and I didn't know the exact doses of my supplements because I didn't think I needed them for the interview.  She was short with me about that.  Then she asked if I was up to date on my vaccinations and I replied that I wasn't sure.  "You aren't sure???"  She was irritated.  I told her I wasn't going to be vaccinated further.  She paused and stared through me.  A look that threw those heavy stones of judgement all over again.  When she asked for family health history, I couldn't even concentrate anymore.  I finally said, "I just spent 15 minutes writing all of this out on the 7 pages the receptionist asked me to fill out.  Would it be easier to look there?"  I was done.  Mentally exhausted and super nervous about talking to the doctor.  The nurse took my blood pressure.  It was high.  It has never been high.  I told her it's always been low...sometimes a little too low.  She said some people get high blood pressure when they are nervous.  Ding! Ding! Ding!  I asked for a drink of water.  I knew I was about to lose it.  When she brought me the water, tears were already stinging my eyes.  I didn't know if I could face more judgement.  How was I going to talk to this doctor knowing she would disagree with the very way I'm raising my children?  Would I have to sit through a lecture on my bad parenting?

I waited...and waited...and prayed.  Prayed for God to open the heart of the physician.  Prayed that she could see my love for B and know that I have his best interest at heart.  Prayed that God would sooth my nerves enough for me to get through it.

In came the physician.  I was so nervous, I didn't know where to start, so I pulled out my phone.  On it, I saved a video of B having a tic episode.  I turned it on and said, "I would like you to see my son."  She watched the video quietly.  When it was over, I said, "That is so you know I am not a Munchausen mom."  I then shared B's medical history with her.  From vomiting after his six month vaccines, to the full body rash from the MMR.  A rash that I didn't even report because it is so drilled into us that vaccines are safe that I didn't think it was serious.  To his waking up around 18 months with the light gone from his eyes.  His whole countenance had changed.  I'd forgotten to mention his reaction to the HepB vaccine at birth.  I told her we will not be vaccinating further and our daughter will not be vaccinated either.  She listened.  She believed me.   She said that while she believes in and promotes vaccination, they do carry a risk and not every child can handle them.  She said that I am doing the right thing by protecting my children.  I am not selfish.  And nobody has the right to make me feel bad about that decision.

 I told her about the sensory issues.  How they'd practically disappeared with biomed.  I told her our biomed physician is a medical doctor with a PhD in biophysics.  That we trust him and what he has done for B.  That he is not a quack.   She listened and did not interrupt.  I explained B's health before and after biomedicine and she was not dismissive.  She said, "That is amazing."  In fact, she told me the story of one of her patients.  A mother swore her child's seizures were being caused by his amalgam fillings.  Doctors would not believe this mom.  They poo pooed the idea.  The fillings were removed and the child is seizure free. He was able to cease his seizure medication.  She told me that parents know more about their children than their doctors do.  I could not believe my ears.  Sweet music to my very soul.

I was upfront about B's supplement list.  It is long.  I told her my husband is a pharmacist and we've researched every supplement and is she okay with that.  Could we feel comfortable sharing that list with her?  She said her clinic is open to alternative treatments.  She even went on to ask me if we'd tried treating PANDAS with silver because it is a natural antibiotic.  She is open and even somewhat knowledgeable about natural medicine!   I told her my son is very thin and that it is not due to the diet.  She said, "Well, you're not big, yourself."  She went on to tell me about her grandsons.  The eldest is a skinny little thing and the younger one  almost outweighs him.

She told me that she blocked off a good chunk of time for our appointment.  She said they will continue that practice until insurance companies step in.  She said she could conduct a physical in 15 minutes, but it takes a lot longer to find out what is going on in the life of a patient.

We shook hands and as she walked out the door, she paused with a warm smile and said, "You are welcome here."


I felt the weight of the judgment I have been carrying for 2 and a half years slide off.  All the worry, the anger, the frustration.  You are selfish-----gone.  Dangerous-----gone.  Crazy-----gone.  Ignorant-----gone.

You are welcome here.