Grady Update (Its a long one!) and MTHFR is not an Abbreviated Swear!

I have to share here because I have spent countless hours scouring the internet in search of stories like ours. One of my favorite pins says "A worried mom does better research than the FBI."  True story.  So on to Grady...(with random pics thrown in because he's just. that. cute.)





When we went through fertility treatments, I was searching the web for blogs and stories and research that would give me some hope that a baby was in our future.  Blogs about IVF? I read them all.  Message boards talking about fertility meds and protocols? I couldve been a doctor after all the acronyms and information I learned.




When we went through adoption, I deleted those fertility pages and turned to adoption blogs, adoption websites, and adoption message boards.  I learned more legal terms and information than I ever wanted to know.  I cried happy tears when fellow bloggers finally became parents after years of waiting.  





When we were told I had a blood clotting disorder, I researched the heck out of it.  When Eric was offered a job opportunity in Texas, I researched it to death.  When any event or illness or issue impacts our family, I research it into the wee hours of the morning (literally), and then continue researching until I am satisfied with the information Ive learned, or until the issue goes away (ie, we didnt move to Texas). 





We have been chasing answers for Grady for MONTHS now. It started when he wasnt responding to his name and seemed to "lose" some words he had previously mastered.  I had brought him to the pediatrician countless times, sometimes twice in a week, convinced that something was "wrong".  The pediatrician "assured" me that I was "just spoiled by Whitney! She was such an easy, laid back baby who did everything so early, and now you have Grady who is just a grumpy baby and you dont know what to do with yourself."  I demanded a referral to several specialists....a developmental pediatrician, an ENT, and an audiologist.  I was no doctor, but I KNEW that it was not normal for my son to completely ignore us when we called his name.  Yes, its age-appropriate SOMETIMES.  But not the way Grady was ignoring us.  



I sat in the parking lot of the pedi, crying, and called the ENT.  They got me in the next day or a few days later, and we learned that Grady had a 50% hearing loss.  FIFTY PERCENT.  The kid was ignoring us because he couldnt HEAR US! Our pediatrician told us that he had fluid in his ears but "it wasn't enough to make any impact on his balance or his hearing."  WRONG!


So, believing we had uncovered the answer to unlocking Grady's vocabulary (he hadnt gained any new words between March and July despite having gained new words and sounds regularly from infancy), he got tubes in his ears and we thought that would help improve his poor balance and lose the vertigo he was feeling that was leaving him nauseous and with low energy.  We really thought the tubes would be the big answer!

Unfortunately, weeks went by and we noticed that Grady's balance was only marginally improved, and while he was still just 15-16 months, his vocabulary hadnt exploded the way we had hoped.  He was definitely hearing better, but we had only tackled one of the issues he was experiencing.





After meeting with his ENT, she agreed that his speech should have taken off much more with the tubes in place.  She, like every doctor we have seen, was VERY impressed by Grady's ability to name the letter and sound for all the letters in the alphabet.  And because he was able to do so, she believed his words should be coming more steadily.  She referred us for an "expressive language speech evaluation."





While we waited for the appointment, I started making notes of all the "weird" behaviors Grady exhibited.  THings only a mom would notice, but things that told me something was "off" or bothering him.  Aside from the frequent ear infections, I would often take Grady to the pediatrician thinking he had another ear infection, only to be told that he does not have an infection.  His ear had fluid, but was not infected.  Well, constant fluid in the ears IS a problem.  And looking back, Grady had a habit of putting his ears to his shoulders, kinda like a shrug.
You can see it in the beginning of this video at 7momths old:
 

Also, as someone who grew up taking ammoxicilan for Strep Throat and ear infections on a regular basis, and with two parents who have ZERO allergies, we were surprised and confused when Grady showed signs of an allergy to Ammoxicilan when he had his first ear infection at 8 months.  We gave him cephalosporin instead, and it made matters much worse, adding diarrhea and vomit to the already painful ear infection.  Looking back, this was his body's way of dealing with toxins.





At his one year appointment, Grady's pediatrician showed zero concerns.  He was still shrugging his ear to his shoulder, but was healthy and growing and happy and he knew his animal sounds and most of the letters of the alphabet.  He loved Gym class and was a happy dude.  We made the transition to cow's milk and thought all was smooth.  One month after his first birthday, Grady got really sick.  
http://www.katbass.blogspot.com/2013/05/welcome-summer.html 

http://www.katbass.blogspot.com/2013/05/fevers-pool-parties-and-fun-with-friends.html

 He was down for the count for a week and, I didnt realize it until February of this year, but that is when things started to unravel.  A month later:

http://www.katbass.blogspot.com/2013/06/poor-gbass.html

So as it turns out, all that sickness from May and June was really a giant red flag that Grady was battling allergies.  Dairy, in particular, but also gluten.  We had no idea.  And most disturbingly, doctors had no idea.  Not one nurse or ER doc or pediatrician or physicians assistant suggested that the recent switch to milk could be the culprit.  And our family has no history of food allergies on either side, so we never wouldve suspected it.  

So months and months of milk and gluten and repeated cycles of antibiotics and tubes in his ears and...yep. Not one doc along the way suggested we should get to the root of the issue.  Instead they just kept prescribing medicines.  Another annoying detail? I am a know carrier of the MTHFR genetic mutation.  Had doctors tested Grady at birth, we wouldve learned that he has TWO copies of the MTHFR mutation.  And ya know what happens to people with two copies of MTHFR?  They often have dairy and gluten sensitivities (among many other issues.) Yeah. 

So after his "super awful viral infection" cleared up, we carried on with life as usual.  Pool days, beach vacation, Disney fun.  But something kept nagging at me about Grady.  He was changing.  His balance was getting worse instead of improving.  He stopped gaining new words and even lost some words he had mastered ("car" and "key" and even "ball", which he'd been saying for months!).  His eye contact was terrible.  He stopped responding to his name.  He wouldnt look in a mirror.  Ever.  He had less energy and would prefer to just sit on the couch and watch movies back-to-back-to-back if I let him.  He was not a typical toddler boy by the end of July.  He was here, but he wasnt present, if that makes sense.  Honestly, the scary "autism" word kept coming to mind.  I knew people would think I was crazy because there was no way this happy, social, Meatball was battling autism! ..... Right??

At the end of July, I took him to the pediatrician again and told her point blank, "Something isnt right."  She said he had fluid in his ears, but it wasnt enough to impact his hearing. (WRONG.)  She said it wasnt enough to warrant tubes (WRONG) or explain his poor balance (WRONG).  She said she could see why I was concerned but said he is "totally fine" and that I was just spoiled by Whitney who was a model infant and toddler, talking early and a social butterfly.  She sent me on my way with a referral to a developmental pediatrician who couldnt fit us in for 7 months, and after I went back in the office to express even more concern, our pedi half-heartedly wrote me a referral for an ENT and audiologist to check his hearing.  She did it to get me off her back.  I still havent decided how Im going to address all this with her going forward.  

The next day, after the audiologist and ENT met Grady, we learned that he had a 50% hearing loss.  50%!??! and his ears were infected.  Three days after that, Grady was the proud owner of a new set of tubes in his ears.  

At the 30 day tube check, his hearing was "within normal limits", but I noted to the doctor that we still didnt see any major speech improvements, he still had low energy, and he just wasnt typical toddler excitable.  She wasnt concerned because he wasnt even 15 months yet, and I tried to accept that no one else was concerned, so maybe I shouldnt be either.  Yeah, that didnt last.

A month later, we had his 15 month appointment with his pedi and she said, "words will come.  Just wait.  You wont be able to shut him up."  The following week, he tested positive for Flu B and two ear infections.  He was put on tamifu and ammox.  The following week, October 13, he was sick again and had a high fever.  

This is what I wrote back in October, before we knew what was going on.  But it all makes sense now.

http://www.katbass.blogspot.com/2013/10/grady-meatball-dude.html

And this is the eye blinking thing Im talking about in that post:




(Ill give you a few minutes to read that last post since its pretty important to the rest of the story.....)

So while we waited an agonizing amount of time for the appointment with the neurologist, we had Early Steps come out to the house to evaluate Grady.  It was such a mix of emotions, because you want your kid to score well, but you also want them to show a true sample of who they really are so the evaluators can get a good sense of any deficits or any areas needing therapy.  Well, Grady knocked it outta the park.  Sorta.  He passed in every area and did not qualify for any therapy services through the state, however both evaluators agreed that Grady looked a little bit like autism.  He banged his head on the desk and didnt flinch.  He didnt respond to his name.  He didnt budge when they banged some blocks behind his head.  They were surprised when I told them his recent hearing evaluation showed his hearing was normal.  They said they tried to mark his scores down far enough that he could at least qualify for the next evaluation level, but they just couldnt get him there because he did "so well." Reassuring? Yes.  Frustrating? Absolutely.  The lead evaluator said she could see how concerned I was and, as a mother herself, she wanted to calm my fears, so she scheduled him for the longer, more in-depth evaluation to see if maybe some of his borderline scores would drop low enough to qualify him for, at least, speech therapy.  Of course, we had to wait two more weeks for that evaluation to happen, but I was excited that someone was finally seeing the issues I was seeing. 

The next day, at the urging of a friend, I spoke with another SLP who has a practice much closer to our home and who has successfully treated several of my friends' kids through the years.  Ms. J had ties to Whitney's school and I just felt like she would give me her honest, professional opinion.  Looking back, I guess I shouldve had questions when she gave us a diagnosis over the phone and having never met Grady in person.  I told her about his lost words and sound and the fact that he still hadnt made any speech gains in MONTHS now, and that he was struggling.  Three days later, after meeting Grady in person, she stood in her office and told me and Eric that Grady had "profound apraxia of speech" and that he would need many, many years of intense speech therapy to ever be able to talk clearly and so that others would understand him.  Id be lying if I told you that moment isnt burned in my head.  It is near impossible to get that kind of news out of your head when it pertains to your sweet baby boy.  "Profound".  It means he wouldnt stand a chance of recovery or at real speech unless we therapied the heck out of him.  Three sessions a week, minimum.  It was overwhelming and sad and heartbreaking.  Apraxia is scary and has unknown causes.  But "Profound" apraxia just sounded so. much. worse.  

So, believing Ms. J and trusting the fact that she has had "probably 40 or 50" cases of apraxia since she started her practice, and believing her when she said she would stake her license on the diagnosis, we started Grady in speech therapy three days a week.  Having met our deductible earlier in the year (thanks to tubes, countless ear infections, etc), the speech sessions were only $10 a pop.  And Grady enjoyed the time there.  He wasnt making gains, but it certainly couldnt hurt, so we kept it up.

The following week, we finally saw the neurologist.  After meeting Grady and talking with us, he told us that Grady is "very intelligent, personable, and maybe a little too wobbly".  He ordered and MRI and an EEG and told us that he wouldnt even discuss speech concerns until Grady is two and a half.  Period.  He didnt say "its not apraxia", but he said he doesnt bother worrying about speech until kids are older because so many kids catch up on their own.  

Right before Thanksgiving, we had the longer Early Steps evaluation.  Grady again did not qualify, though they noted his poor eye contact and to walking, and said they saw my concerns, but he just wasnt delayed "enough".  So. very. frustrating.  

Two days later, I took him back to our chiropractor and she said, again, there was no physical reason for his wobbly gait, but noted his poor eye contact.  She, too, mentioned how "incredibly smart" Grady is.  Nothing was adding up yet.  

We had his MRI and it came back normal.  The first week in December, we had his EEG and it, too, came back normal.  So we knew that the eye blinking (which had gone away) was not seizure activity.  A sigh of relief for normal results,....but bigger question marks.  

This was my December update after we received test results:
http://www.katbass.blogspot.com/2013/12/grady-update.html

Its tough to look back at all the worrying and stress and know, NOW, what we didnt know then.  

Exactly a week after that update was written, and after talking to one of my favorite friends, Erin, and reading countless websites in the wee hours of the night, I decided to try a gluten-free diet for Grady.  On December 19th, (his 19 month bday), Grady kicked gluten.  I told myself and Eric that "we will try it for a week...or maybe just until the first of the year."  I just wanted to see if maybe gluten could be causing some issues.  Three days later, Grady was coming alive!  The little boy who could sit still for HOURS watching movies? He couldnt stand to be held back during Christmas Eve mass and he wanted to run and explore!


This is a kid who, three days earlier, wanted to be carried everywhere and rarely left my side.  This was a big deal. 

Then, two days after Christmas and without knowing we had dropped gluten, his SLP randomly mentioned that Grady's eye contact was noticeably improved and that he just seemed more engaged and cooperative!  So I wasnt imagining the changes! He really was improving without gluten in his little body!!  I was so relieved and felt like I was onto something.  After talking with some other mommy friends and researching more and more...and more..., I made an appointment to meet with Dr. Franz of The Franz Center in Orlando.  She's a pediatrician with a holistic, natural approach.  Tough to come by in the days of big pharma! We met with her on January 6th and told her that many of our concerns seemed to point to autism, but that my gut just want sure.  He had noticeably fewer sensory issues.  He'd stopped toe walking and his feet werent nearly as ticklish.  He got his hands dirty touching lobster at a dinner a few days before New Years', and was really engaging with people so much more since we'd kicked gluten.  We were encouraged by the changes but hopeful that Dr. Franz could suggest what else we could do to help Grady, especially with speech.

She and her colleague spent an hour and twenty minutes with us.  Unreal.  They agreed that Grady had "soft signs of autism" and that he "had that autism look in his eyes".  When I told her through tears that "He is SO freaking SMART, but its like its all trapped inside!", she smiled at me and said, "Honey, I hate to tell you, but that is the definition of autism."

She started him on some supplements and told us to do fish oil and vitamin A.  She wanted to see him back in six weeks.  She watched the videos of Grady blinking, and she told us it was NOT a transient tic, but likely a reaction the anesthesia after the stitches in his chin.  And she told us the "flu" might also have been a reaction to the MRI anesthesia, and she warned us not to introduce ANY toxins of any kind, as his body clearly couldnt handle them.  She patted us on the back for not vaccinating Grady, as those levels of toxins could be hard for him. 

So, imagine my fears just two weeks later, when Grady tripped (poor balance, much!?) and chipped his front tooth.  http://www.katbass.blogspot.com/search?updated-max=2014-01-30T19:30:00-08:00&max-results=500
And in the meantime, our insurance deductible reset, so our $10 speech sessions were now going to cost us $55 per session.  Sigh.

We met with Dr. Franz a few weeks later and she ordered a bunch of bloodwork, told us to fill a prescription for glutathione cream, and told us to continue using Young Living oils, as they are the only ones that can safely be used on children and are the purest oils on the market.  The next day, we took Grady for bloodwork....ugh.






And while we waited weeks for the allergy results, Grady started preschool! We couldnt afford to keep him in $150/week speech lessons that, to be honest, werent yielding any significant results, but we knew he needed something more structured than play dates and My Gym classes.  So we enrolled him in a preschool that, amazingly enough, is even closer to our house than Whitney's school.  And he LOVES it.

Grady 21 Months

I typed this update on a facebook page I frequent re: the oils we were using:

LOOOOONG story made super short: my husband and I met with his pediatrician today and she took off her glasses, set her pen down, looked us straight in the face and said, "Grady was headed for full-blown autism. But because of the interventions you have made and the steps you have taken, you have stopped autism in its tracks. Well done."
Now. I GET that autism is controversial and I GET that vaccinating is controversial. If I wasnt witnessing this before my own eyes, I would never believe it. If a friend was telling me her doctor told her she prevented autism, I would smile politely and think she was drinking the krazy koolaid. But I know what we have seen in our son and we know the things that have worked and things that havent worked in an effort to get us to this place today. 
In a nutshell: we went gluten free and noticed a difference within 3 days. Then we dropped dairy. We didnt notice any huge difference from dropping dairy, but figured we could add dairy back in if his blood work came back without any allergy issues. We added Nordic Naturals fish oil and noticed a bump in his speech and clarity. We added a probiotic to heal any gluten damage in his gut. We added liquid vitamin E supplement and noticed an increase in his speech again. We increased the dosage (doubled it) and he gained three or more new words every day. As the pediatrician suggested we would, we started noticing big connections between Grady's diet and his behavior and speech. HUGE links. On a whim, "just to see what happens", we allowed him to have gluten free pizza Friday night. Saturday night he went to bed with a fever, and by 1:30am Sunday morning, he had full blown ear infections and 102 fever. 
We met with the pediatrician today to go over recent allergy testing and micronutrient testing to see what other foods we need to eliminate and what vitamins and minerals Grady's body isnt absorbing. While there, we mentioned his visit to the urgent care for the ear infections and the possible link to the pizza. She said that the ear infections were directly related to the dairy on the pizza. She said we could have avoided the ammoxicilan (and should only give him 3 days instead of the 10 day course) by sticking with the essential oils we were using (thieves, lemon, purification, and peppermint). (This is where Young Living comes in!)
Our doctor has an intern working/shadowing her. He is an acupuncturist who is crossing over to an MD and doing his clinicals now. He spoke up and said, "If you are using doTerra, they have a blend called..." and my pediatrician cut him off, rolled her eyes (she's intense!), and said, "NO. Never doTerra. Never. Young Living is always the way to go. They are just simply the best. I would never recommend another company. Especially doTerra."......I had to smile.  
She went on to tell him "google it." and then (because im a Lemon Dropper and read what yall write and post!), I told him that doTerra recently had to take the "100%" off their claims of being pure oils. I didnt get too deep because I was really there to chat about my son, but it was SO reassuring to hear an MD rave about Young Living. 
She told me next time he has any kind of inflammation after eating the wrong thing, to "thieves him" and use diGize and "just keep doing what you are doing."
She wouldnt recommend specific oils since he is doing so well with what we are already doing, and we want to see how he responds to the vitamin supplements he is starting. But I currently use valor on his wrists every day. 
She gave me a "Permanent Exemption from Vaccinations" because SHE believes that vaccines impact the gut, which impacts the brain, which could trigger "stuff that would otherwise lay dormant forever". I have never been a believer one way or the other re: vaccines and autism, but I am also not willing to allow my son to test anyone's theory, so his sister is fully vaccinated but he will remain vax-free for the foreseeable future. 
I say allllllll of this because I know I have come to the internet in search of answers to help my son. And if his 22 months of life can help just one other kid get healthy or lift the fog from their eyes or help them cope with sensory stuff better, then taking 10 minutes to type this up is absolutely worth it.

(All of these pictures are from February and March)

We met with Dr. Franz again and she told us to drop dairy completely and see what happens.  Dropping gluten wasnt difficult.  Yes, wheat is in MANY products, but dairy? Dairy is in EVERYTHING.  It was going to be harder to kick dairy.  Goldfish crackers, cheese sticks, grilled cheese sandwiches, mac and cheese, toddler staples.  And we kicked it all.  

The differences were not as clear as when we stopped gluten, but they were still undeniable.  The last weekend in February, we allowed Grady a gluten-free pizza (with real cheese) on a Friday night, and it turned into two raging ear infections within 36 hours.  In fact, we have since learned that they werent ear infections, but major inflammation.  We saw Dr. Franz again a few days after the inflammation (which ALWAYS happens on the weekend!?!), and she said to quit the antibiotics and treat him with oils and wait it out.  She gave us the results of his blood work and we were surprised to learn that GBass had sensitivities to MANY foods.  Like, dozens.  Most notably, strawberries and bananas (two of his favorites) and casein (the protein in milk) and that he did NOT show any allergies to gluten! 

(pics are out of order here...sorry...do yall know how long this is taking me to type out!??)

Grady is starting School!

So we stopped dairy and noticed positive changes.  We noticed that the ear/shoulder shrugging disappeared.  Gone.  He'd been shrugging his shoulders since he was itty bitty...and it was gone when we dropped dairy. His personality started to come out more and more every day, and he just seemed less whiny.  All awesome things, but his speech was still an obvious struggle for him.  I kept telling people "we are watching the signs of autism disappear, but if we could just figure out his speech, I could stop worrying so much."  As a casual side note during the meeting with Dr. Franz, she mentioned that Grady's MTHFR testing came back with two mutations.  What did that mean? Well, we would need to schedule another appointment to discuss that, as we had already spent over an hour discussing food sensitivities and what to cut from his already-limited diet. 

CHEESE!

Knowing that I had Dr. Franz' help via email was awesome, but I was wondering if there was more.  Is there someone else out there who could help us get to the bottom of the speech situation?  I asked around and researched a ton and decided we would meet with two, maybe three other doctors who had experience with special needs/autism/apraxia/difficult scenarios with a natural approach.  I made appointments.  We spent $100's.  More money than we have (thanks Mac and Gramps!!) and I continually left these appointments feeling like we'd been taken.  Like we'd paid for snake oils.  Or like we were veering too close to witchcraft.  I was losing sleep and gaining weight and getting no where.  Thankfully, Grady was still happy and perking up more and more every day.

In early April, as Grady's second birthday approached, I contacted Early Steps again.  They had told me in November that his case could be reopened after he turned two.  They said the expectations and standards for a two year old boy were much higher than those for an 18 month old boy, and if he truly has apraxia, he would show a significant enough delay that would qualify him for services.  I wanted his file reopened so I made the call.  I was surprised when the case manager asked "How many words does he have?"  I tried to explain that he has "words", but they dont come naturally to him and that he had ZERO endings on ANY words.  I used my famous "he can tell you the letter 'U' says /uh', and the letter 'P' says /p/, but he cant say 'Up'."  She again asked how many words did he have.  She needed a number.  She said, "Would you say he has five? six? ten words?"  Welllllll, it wasnt that simple.  He had dozens of words at the beginning of April, but none of them had endings and many of them were only intelligble and understandable by those closest to him.

She made the appointment and, again, we waited.  Grady had a birthday.  We met with another specialist who was a quack, to the tune of $480.  And my level of frustration continued to grow.  WHY couldnt this sweet boy put sounds together to form words???  His behaviors had improved so dramatically in recent weeks, but those words were the last piece to the puzzle.  I was determined to figure this out for him.

(I feel like they should start making shirts that say "tough like MOM", no??)

So on April 22nd, just three days after he turned two, we met with Dr. Franz again and she told us that Grady would qualify for an autism diagnosis if we wanted it.  She said we should focus on healing his gut and when I asked about the MTHFR mutations, she didnt have much to say.  As helpful and awesome as she had been, she just didnt know a whole lot about MTHFR.  No one does.  But through my research, I just knew that could be our ticket to helping Grady.  

I learned that glutathione is like the laundry detergent of our cells.  It helps our body/cells eliminate toxins.  If we dont have enough glutathione, toxins build up in our bodies and we become sick.  Grady had low glutathione according to his blood work.  In fact, most people with MTHFR and many people with autism have low glutathione.  If your body cant properly and efficiently eliminate toxins, then ANY toxin you add to your body via food, skin, or injection will build up and impact your health.  (That is why there is a link between vaccines and autism.) I learned that shampoo, sunscreen, the pool water, sitting with the windows down at a gas station, exhaust from a passing bus, and depending on how 'conspiracy theory' you wanna be, even your microwave give off toxins to some degree.  MOST people can handle those toxins.  People like Grady can not handle simple toxins.  

An amazing friend from college, Devon (seen here), is the marketing director for a major pharmacy (Hopewell) in New Jersey.  She messaged me a handful of times to tell me she knew about MTHFR after Id mentioned it on Facebook throughout the appointments I was taking Grady to.  After she prodded me a few times, I finally decided to call the MAPS doctor she referred me to.  Dr. H has a thriving practice in New Jersey, and Devon works closely with her and her patients.  This has been one of the biggest blessings in our lives! Devon was able to get us a phone consult with this doctor who treats MTHFR on a daily basis.  She "gets" it.  She knows that it is often associated with autism and speech delays.  She knows kids just like Grady and she treats them successfully every day! 

Say whaaaaaat?!

So on April 23rd, the day after Dr. Franz told us she would give us the autism diagnosis if we wanted it, Dr. H was like a light at the end of a very dark tunnel.  She and I talked for an hour and it was clear that she knew how to treat Grady based on the 30+ pages of blood work and testing results I had faxed to her that morning.  She ordered MethylB12 injections for Grady.  A shot in the butt every three days.  Along with methylfolate and P5P and a good probiotic.  She told us to give him 10 drops of D3 every day and to continue with fish oil and vitamin E.  

(This is what he does during "scary" parts of shows or movies.  And I love it.)

We still have to remain gluten free and dairy free, but with the gains we are seeing, it is totally worth it.

Devon handled everything and insurance covered most of it.  And two days later, we had a giant box of supplements and shots for the Meatball.

We did his first shot and, while I wouldnt say he liked it, he is a trooper and makes more fuss about having to lay on his belly than about the actual prick of the needle.

We started the shots and all the other meds right as we were leaving for our Disney vacation  and then we added some meds to treat yeast, as a lot of people with MTHFR and a lot of kids with autism suffer from "leaky gut", where the lining of their intestines is so damaged from gluten and dairy, that it becomes permeable.  Particles of food can move through the lining and enter the body, creating yeast growth and another whole problem to solve.  So not only do we need to heal the lining of his gut, but we had to eliminate the yeast.  Once the lining of the gut is healthy, his body should be better able to absorb the nutrients and vitamins his brain and body need in order to function properly.  

We also started a product called protandim.  Between the injections and supplements and the protandim, something is working in a major way.  People who have MTHFR mutations and people with autism have symptoms that overlap or coincide.   With both, there is a theory that, if you heal the gut, in many cases you can heal the mind.  I whole-heartedly believe this theory.  As we have managed Grady's diet and added vitamins and supplements, we have watched him blossom.  The changes have been too significant to be coincidence.  When we added fish oil, he woke up babbling the next morning.  When we added vitamin E, he started trying more sounds.  And when we took away gluten and dairy, his behavior changed.  There is a clear connection between the gut health and the brain function.  Dont believe me?  Drink a six pack of beer and tell me how it effects you.  Slurred speech? Wobbly balance? Impaired judgement? Queasy stomach? Tired? Emotional? The things we consume directly impact our brains.  Dairy and gluten were like an opiate to Grady.  

I am not a scientist.  I am just a mom who was really concerned and convinced that her son was regressing for a very specific reason.  And I was determined to find the reason and treat it.

After a few weeks on the injection protocol, I happily reports to Dr. H in NJ that it was working! He was RUNNING into school now!

His teachers have told me that they never wouldve had autism on their radar.  They said they saw/see NO signs of autism.  He plays with the kids in his class.  He participates in circle time and loves songs with hand motions!  He doesnt stand out as appearing any different from any other kid in the class, other than how smart and cute he is :)  He is walking everywhere now.  Before the shots, I had to carry Grady at least 70% of the time.  He RARELY walked anywhere, and if he did, it was for very short distances.  

Now? Running.  Walking ahead of me.  Holding Whitney's hand and walking proudly.  

She SERIOUSLY loves this little dude. 

I told Dr. H that I was thrilled with the results and know we are on the right track, but still just REALLY wanted speech to come.  I wanted him to be able to talk! So she recommended adding a product called gluconic DMG.  And whoa.  The dude started putting different syllables together.  (He could say "mama" for months, but never "mommy".  He could repeat CVCV syllables like mama, dada, sissy "seesee", bubba, etc, but he couldnt do two different syllables like mommy, daddy, puppy.  And he was slowly adding endings to words.  Until then, we got "buh" for "bug" and "cheeeee" for "cheese" and "uhhh" for "up".  But the gluconic DMG brought word endings in just a few days!

This was a big day:

He struggled and grunted and groaned as he tried to drag our pocket door closed.  He worked so hard!

And when he did it, he was so proud. :) 

"Grady, show me your muscles!"

He's so tough :) 

As I checked in via email with Dr. H last week, I told her how his speech was growing and after doing some more research (nope, still havent stopped researching!), I asked if we could add L-carnosine to his regimen.  She agreed that it would be a good option for him and that it does help with speech in many cases, so we added it on Monday of last week.  We cant shut the kid up!  Hes' waking up talking in his crib and he goesto bed talking.  He's putting two and three words together!  The kid who, seven months ago was diagnosed with "Profound apraxia of speech"? He is saying, "juice box, please?" and "More Tom, please" when he wants more Thomas the Train.  And we've done it without all the speech therapy so far.  

As the days go by, he is gaining new, FULL words.  I just watched videos of him doing our Kaufman cards just three months ago, and I know he can do them even better now.  In just three months!  I cant wait to take "after" videos to compare to those "before" videos! 

Now, just 90 days after his first dose of treatments for the MTHFR mutations, Grady is thriving.  He would no longer qualify for an autism diagnosis.  Yes, we beat autism :)  Did he ever truly have autism? Who knows? I do believe that if we had vaccinated him, we wouldve been looking at a lot more damage.  In fact, we had his Early Steps follow-up evaluation last month, and he scored ABOVE average on every single area.  He made such huge gains from his 18 month evaluation to this one, that he looked like a different child!  He is totally that typical toddler boy, jumping on couches and loving Thomas the Train and trucks and cars and dirt and,  flirting with pretty girls and did I mention he learned how to swim in the last 6 weeks?

So yeah.  I'd encourage any parent facing ANY kind of health issue with their child to first look at their diet.  Then, find a great doctor (it helps to have awesome friends like Devon!).  Pray a lot.  Dont eat as much as I did.  Look for answers where no one else is looking.  Trust your gut when something doesnt feel right.  Pray some more. I was sooooo scared and worried about that profound apraxia diagnosis that I couldnt think straight.  Another awesome friend, Sara, from my high school days is now an SLP.  If I didnt have her to text videos to and bounce questions off of and ask the same questions over and over and over, I wouldve gone crazier!  Her constant reminder that "progress is the goal" and "progress is progress" were invaluable to my sanity! Use your friends as resources.  Ask if they know anything about what your facing.  And pray some more.  Dont stop until you have answers.  If i had listened to that profound apraxia diagnosis, and just found a way to pay the $150 per week speech therapy sessions, we would be in debt up to our eyeballs and who knows if Grady would've made this much progress?  With his gut being so unhealthy, how could his brain get the proper nutrition to function?? How could he process and retain new information and sounds and patterns if his brain was only getting a fraction of what it needed?  

I dont know what COULD have happened, but I know that Grady's story and the last year of our lives is capable of helping other worried moms and kids facing similar battles.  And I know there are a lot of those moms out there because ive been scouring the internet for answers and bumping into the same names and faces along the way.  I know because we live next door to two little boys who have followed in our footsteps and started seeing awesome results, too! 

I often wondered over the last several months WHY Grady has to struggle. Why speech? Why such a basic human need?  Yes, I know it could always be worse.  We could be facing much harsher issues.  I get that.  But speech? It is something we take for granted.  Something we use every single day and for every aspect of our lives.  I have been completely heartbroken that my adorable, sweet, loving little boy might struggle to communicate for years.  Maybe even forever.  But I know God put Grady here for big reasons.  Technically, and according to several fertility doctors and my own MTHFR mutation, Grady shouldnt even be here!  But God works miracles and I know Grady is here for big reasons.  He has an awesome story to tell and I cant wait to hear it.....in his own words.  Its happening.  

Edited to add his latest Kaufman Cards:

So now that I have taken HOURSSSS to type this up in an effort to preserve our history and hopefully help others, I can go back to blogging about my kids running in the rain and playing in the hose and getting glasses and our family reunion and Mother's Day and Fathers' Day and....life.  The fun stuff that I get to pay more attention to now that Im not so wrapped up in Grady's issues.  Prayer changed this situation.  Just as prayers have changed many other situations in my past.  And I love watching it all unfold. 

Check out www.mthfr.net for more facts and info and resources regarding MTHFR.  Close to 50% of the population has at least one mutation, and its only recently been discovered (early 2000's) as part of the Human Genome Project.  It is linked to cancer, fibromyalgia, MS, speech delays, miscarriages, autism, alzheimers, and many other ailments.  Its worth researching since its a relatively easy fix when you find the right doctors!