Christmas morning gift

A quick post about Christmas morning.  After a rough night and another MB-12 shot, I was not really anxious for Christmas morning.  We were visiting my family in another state; so the sensory issues were already high.

About 4:30am, Kyler lie awake in his crib (we were sharing a bedroom with him).  He was cooing and happy.  I was panicked because I knew it was early; however, I thought it was more like 6am.  Then, I heard my nephews in the other room.  They must be up checking out what Santa left for them.   I decided to peek out our bedroom door and sure enough, the boys were flinging wrapping paper around and enjoying the Christmas morning moments.  I decided to go ahead and grab Kyler and take him into the other room.

As you know, transitions, odd timings, and off schedules can cause great chaos in the life of an autistic child much less a completely new environment.  I expected crying.  To my surprise, my beautiful little boy became a “normal” little 1.5 year old for about one hour of our Christmas morning.  It was pure joy (and utter shock).  He smiled with a big gummy and teethy grin at everyone who was around.  He looked everyone in the eye.  He babbled and clapped and was just so happy.  I forgot, for all of a few minutes, that there was anything atypical about him.  God, it was nice.  He watched the boys play with their toys.  He chased the cats.   He hugged me.  He looked me straight in the eye and showed me his big pearly whites.  Bliss.  It was short and sweet but it was a very meaningful Christmas gift for me.

Autism- One step forward THREE steps BACK!

So, the one part of this puzzle that I’m stuggling to get through is the constant progression then regression pattern.  It’s just not part of my make-up to allow something else to be in control of the situation.  I need to see results NOW!  I think that if there was just a speck of light at the end of the tunnel somewhat consistently, I’d be able to handle this much better.  But, the constant roller coaster ride of emotions if pretty tough.  The highs are SO HIGH but the lows are SO LOW.  To go from one extreme to the other with such force and energy is just exhausting.

In case you haven’t figured it out, we’re having a low right now…ok, not just now but for the past two weeks.  So, you know the routine,  get through the day (as scattered as it and you may be), then at any resting (I mean alone) time, research, research, and research some more.  My head is killing me from trying to seek out any similar scenario that might provide just the slightest hint to what the heck is going on with Kyler and of course, with the hope that there will be some burst of improvement following the regression.

It started after our last DAN! appt that I wrote about.  More supplements were added at once and the anti-fungal rotation began.  STUPID, STUPID, STUPID!  Do yourself a favor and learn from my mistakes…do not, I repeat, do not start your child on multiple supplements at once at full dosages if you can at all help it!   No one told me that and we all paid the price.  The regression began.

Then, the good behavior picked back up (you know, the one step forward kind of day).  I also eliminated the new supps and started over one at a time.  I really didn’t see GREAT improvements and we were still worse than where we started.  Then, then it was rotation time (anti-fungal that is).  Two terrible days and then THREE GOOD DAYS.  And, are you ready for this??…..wait for it…..I heard “momma” for the first time.  Yes, that’s right, he said it.  Did he mean it?  Probably not.  At this point, we’ll take sounds that contain consonants.  Three days in a row, I heard that beautiful sound.  GOD, take me back to that moment!  Then, it was gone.  Everything was gone again.  Therapy took a huge turn for the worse.  Tantrums came on full speed.  WTH?

So, desperate for results, we went ahead and started the MB-12 shots.  We had really been excited to start them hoping for a verbal miracle.  And due to the regression we were witnessing, we said, “why not now?”.  Well, as of yet, no results to report.  I know, I’m full of joy.  HOWEVER, there may be a culprit.  Three shots in, it was time again for rotation….So, grapefruit seed extract, here we come…or back out it comes!!!!!!!!  I mean projectile vomit all day long from my poor child.  This unfortunately was probably our fault.  Again, we were told one capsule but not to start with say a quarter of a dose.  We, again, learned the hardway.

So, we decided to buy the GSE drops and only do one drop twice/day.  Oh have the diapers smelled like a bakery!!!!!!!!!  Kyler seems so ill but do I continue in case this is the “die-off” period?   Or, is there something worse going on? 

It’s so hard to know what to do with these kids!  The missing puzzle piece to one is unlikely to be the same in another.   The long list of helpful supplements for one is unlikely to be identical for another.   So, here I am, taking a break from my extensive research and blogging my thoughts. 

We’re going to stick this one out for at least a week but so help me if I don’t see results after that!

Supplemental halt!

Just want to comment on the previous week or so.  We had SEVERE regressions from Kyler after starting him on the additional supplements.  So frustrating and frightening!  Loss of babbling, loss of coordination, loss of the little receptive language he had acquired.  I contacted his DAN! doctor who said we should back off the supplements and introduce them one at a time.  I wish they had told us this from the beginning.  My gut instinct says that the enzymes had something to do with it because we were giving him 3/day (one at each meal).  The research that I’ve since found says to start with 1/4 capsule and gradually increase.  This is a 1 1/2 year old so obviously, we should’ve started slower but no one told us that. 

Anyway, so we backed off the supplements and only added the zinc and the probiotic (and the rotating anti-fungal).  He has started to “come back” but no babbling…. UGH.  We did that for 4 days and today I added the P5P back in (B6 plus Magnesium).  Supposedly, this one is very beneficial.  Here’s to more babbling…PLEASE!!!!!!

The Autism Journey to Recovery Begins

Ok, I’ve been sooo incredibly busy with doctor appts, therapy, family, etc that I just haven’t been very regular with my blog.  However, I want to start keeping track of all the therapies, biomedical treatments, etc that we are using for Kyler and then note the changes (if any).  I need somewhere to keep track of it so this is it!

Started Gluten and Casein free diet 9/14/08

DAN! appt for lab testing 10/09/08

Started new supplements until test results return 10/10/08:

• Nordic Naturals Cod Liver Oil 1 tsp daily
• L-Glutamine (amino acid) 2 capsules daily
• S Boulardii (anti-fungal/probiotic) 2 caps daily 
• ABA Therapy one hour/day
• Epsom salt baths- 3-4x’s /wk

Behavior changes:

• Said “DaDa” 10/12/08
• started pointing 10/13/08
• Had major stimming episodes possibly a yeast die-off 10/14/08
• Learned to sit down in ABA 10/18/08
• While upset saying “mama” 10/19/08
• Much better eye contact 11/02/08
• Waving Hi and Bye appropriately 11/10/08
• Tolerating more transitions and much calmer (contributing this to Epsom Salt baths)

DAN! appt for lab test results 11/12/08

• allergy to sagebrush
• intolerance to soy and gluten
• heavy metals high: tin, aluminum, arsenic, nickel
• Klebsiella bacteria in yeast
• liver overworked
• anemic
• viral infection (vaccine injury)

DAN! doctor recommended new supplements, B12 shots, chelation and anti-viral medication (in that order not all at once)

Supplements as of 11/13/08

• Cod liver oil- 1tsp/day
• L-Glutamine (amino acid)- 2x/day
• Vital-zyme (digestive enzyme) – 3x/day (each meal)
• Caprylic Acid (anti-fungal)- 1ml/day
• Zinc- 1/day
• P5P (B6 and Magnesium)- 1/day
• multi-vitamin- 2x/day
• Ther-Biotic (probiotic) – 1/day
• Also ABA Therapy 1-2 hrs/day

Behavioral Changes:

• Immediately stopped babbling 11/14/08
• started stimming heavily (spinning, head dragging, toe walking) 11/14/08
• acts lethargic, (flu-like) 11/14/08

Hoping that those are die off symptoms!

Another update- this time fish oil/autism

Well, I put “fish oil” in the title of this post for anyone who was interested in an update on our situation regarding fish oil (in particulary Omega 3’s & 6′).   I believe this stuff works!  I don’t think it produces miracles (or at least not in my child); but we have definitely witnessed improvements each time Kyler started on it.  I say “each time” because we had to take him off of it for 3 days in order to have lab tests completed.  We then placed him on a new kind of fish oil.  Again, as mentioned in prior posts, we were delighted to hear more babbling sounds!  His babbling has continued for 14 days which for us is incredibly encouraging!

This blog is going to have a change of pace going forward.  I’m going to focus more on autism or at least autistic behaviors, methods to improve the condition, and HOPEFULLY a recovery!

The “A” word- Autism

Well, it has been a very long time since I’ve posted.  Many things have come to surface since my last post.  First, I’ve had lots of family in town over the past month so I’ve been busy cleaning, entertaining, etc.  Second, Kyler didn’t improve for awhile… in fact, he took a turn for the worst.  I hesitated on posting because I just didn’t want to post the negative.  It’s time to get to writing again so here goes:

We started the gluten and casein free diet about 5 weeks ago and have been on fish oil for 7 weeks.  We were thrilled with the initial improvement with Kyler from the fish oil.  The GFCF diet was supposed to help because I’ve known in my heart that he has digestive issues.  Supposedly, this diet would help him because he wouldn’t have to breakdown the proteins in the milk and wheat products.  Unfortunately, we have not really seen too many gains from it.  The biggest gain is that I’ve been forced to use my kitchen and actually cook things.  OMG.  I don’t like NON-convenient things!

Kyler soon regressed and lost all babbling sounds and Dada.  He withdrew from us, stopped clapping on cue, dancing on cue, giving “high fives”, and really stopped responding to his name.  It was extremely frustrating.  I heard that he might experience a regression due to withdrawals from the food but after a month with no improvement…I was quite disappointed.

The more I researched.  The more I realized.  Kyler has a problem.  This isn’t just a speech delay as I had so prayed.  His signs of autism are so apparent.  God, WHY?  I’ve researched so much that I feel like an expert although I’m far from one.  There is hope.  Lots of hope and encouragement.  Children ARE recovering from autism.  Please let my child be one of those children.  I had already found information regarding a DAN! doctor (Defeat Autism Now!).  And, there happens to be one in my city- a well-known board certified surgeon.  I decided that we needed to go see this doctor to start healing my child.  No one had diagnosed him but my heart knows the truth.  I still don’t really let it sink in.  Everything just started to fit together.  Pictures from the past year show signs of things that I just ignored or didn’t know any better.  His baby book points out milestones that were met early and then lost …. not coincidentally around the time after his vaccinations.

The biggest turning point was after the last set of vaccines.  He did NOT receive the MMR.  I was already paranoid at this point so I thought I was saving him by not allowing him to receive it.  Instead, he was injected with 5 other shots including one that was a combo AND a TB screen.  The very next day, Kyler ran a 104 fever, was lethargic and couldn’t not stand nor crawl.  Quite scary.  Because he had always reacted poorly to shots I did not take him to the ER.  I consulted his pediatrician who assured me …. he’s fine.  It was after this time that Kyler lost all of the gained skills.  He would ocassionally pick up a skill here or there but lose it again. 

At any rate, so here we are…facing the “A” word.  He’s been referred to a neurologist and GI doctor but I’m procrastinating for fear of diagnosis and inappropriate medication.  I’m relying on his DAN! doctor for now although I will be taking him to the neurologist.  The DAN! doctor prescribed 3 supplements to start: Cod Liver Oil, L-Glutamine (amino acid), S Boulardi (anti-fungal/probiotic).  Be it coincidence or the GFCF diet finally kicking in, we started to get DaDa again from him.  You may recall from previous posts that the last time his started on fish oil, he bagan babbling again…soon after lost it again. 

This time, we are getting more babbling, pointing, and shorter tantrums.  No miracles but small steps…we’ll take them! 

He’s also starting in ABA therapy.  This intense therapy that has to be ran and managed by me is going to be very interesting.  I hope it helps.  So far, he has learned to “sit down” if he wants me to read a book to him.  For any other parent of a 15 month old, this may seem small.  To us, it is HUGE.  I feel like I’m training a dog but supposedly, it’s proven to work.

We’ll continue with the speech and ABA therapy for the next month.  Then, we’ll get the results back from the tests taken with the DAN! doctor (food allergies, toxins, bacteria, etc). I’m hoping for answers.  OH, JUST AS IMPORTANT…just from the prick of Kyler’s finger, here is what the doctor was able to show us, via a microscope, of Drew’s blood:

• Evidence of a vaccine injury- an environmental infection
• Leaky Gut Syndrome
• Poor nutrition
• Overworked spleen
• His body is absorbing the wrong things and digesting the good things
• Allergies of some sort
• Bad/Overgrowth of yeast
• Heavy metal toxins

Seriously, we were shown these occurences in his blood cells- AMAZING.  We should be able to heal his leaky gut and pray that he will begin to digest properly and maintain nutrients.  Perhaps, communication skills will improve at that time.  As far as the infection…I’m not sure as to how that will be helped.

Well, I know this post is kind of jumbled but I wanted to give an update since it has been so long.

BTW- thanks for the encouragement and comments.  I appreciate it!

Speech Delay and Omega 3’s & 6’s (Wks 2-3)

I really wanted to update this last Saturday.  If I had, it would have been much more positive.  Last weekend, we finally heard DaDa again.  Kyler said it a few months ago but lost it.  We were THRILLED to hear him finally say it again.  We have much more eye contact and smiling directly at us.  He has also pointed twice which is big for us.  The DaDa was fairly consistent for 5 days.  Unfortunately, he lost it for 2 days but is sort of picking it back up again.  As you can tell, we hang on every sound!  He had a semi-traumatic day on the day he didn’t really babble.  And, he has four molars coming in all at once.  I tend to believe that when he is truly teething, he makes less noise.  Perhaps, it is painful for him to babble or something.???  At any rate, it has been an up and down week this week but last week was GREAT!  I’m hoping that he’ll continue to use DaDa and “Gee” and add on a few more sounds.  We believe we are hearing “cat” but it doesn’t mean cat.  If anything it is what he is trying to call our dog.  Also, we’ve noticed lots of “bbbmmm” kind of sounds and maybe, just maybe “mum”.  I certainly would NOT consider either sounds to be new words. 

Update on therapy….we thought everything was going well but our ECI speech therapist recommended bringing in a developmental specialist.  I also took him to a private therapist who informed me that she believes he has some sensory issues along with a speech delay.  I was crushed by both issues.  I want so badly to believe that he is just a late-talker but it is looking more and more like something else.  We are going to continue with the ECI therapy including the developmental specialist and a nutritionist.  However, we’re going to wait on further private therapy for the time being ( at least until Kyler is 18 months old).

Something new: we have also decided to implement a gluten and casein free diet.  There is so much debate about this topic and learning delays/disorders.  We figured, what the heck!  There is more background as to why we are starting this diet and I’ll write that in another blog.

Bottom line: Fish oil/Omega 3’s & 6’s, are they working?  Yes, they appear to be working.  I’m not blown away but I’ve seen much improvement despite a few regressions.  It’s only been 3 weeks and he only takes one supplement per day.  I’m anxious to see how he is progressing after these teeth are completely in and after it’s been a total of 6 weeks.

If anyone has a suggestion or could tell me how much their child takes of the fish oil supplement, I’d greatly appreciate it.  I’m just wondering if he is taking enough.

Baby Blues or Postpartum Depression (Part 5) I don’t want to admit it

So, we got through a VERY LONG first month with our brand new alien, Kyler.  We decided to cancel the contract on the house we were building because it was taking them WAY too long.  (We signed a contract when I was 3 months pregnant and when Kyler was 1.5 months old, they had not even broken ground…)  Fortunately, we were able to find a brand new inventory home and just decided to buy it.  It worked out for the best.  Trying to deal with a newborn, being completely unhappy, “settling” on a new house, and now preparing to move was not the ideal situation.  Most people would be one the edge of a nervous breakdown-right?

Apparently, wrong.  I was so lucky to have my family help us move into our new home.  My parents stayed with us for a week while we unpacked.  Thank God they did because I may not have survived.  My emotions were out of control.  I was so at my wits end with Kyler that I basically refused to take care of him.  How terrible is that?  It was like I was turning a switch off in my head and just going to pretend that I didn’t have a child anymore.  I knew my parents were coming to help and I was going to let my mom have him.  My poor mom.

It was kind of out of nowhere that I just went out of control.  Everything, and I mean EVERYTHING either made me yell or cry.  I wanted no part of Kyler and let my mom take care of him all day every day.  I had moved into a brand new beautiful home but could not appreciate one bit of it.  All that I could see was everything that I couldn’t do anymore because of my alien.   There would be no time to decorate, much less shop for decorations, no time to enjoy the pool outside, no time to cook in the new big kitchen.  Again, pity me.  But, in my world, it was serious and that is how I felt.  I was losing control.  Well, I had already lost control but I was losing it mentally!  I can remember getting so mad at Baby Daddy for the smallest things such as how to make a grilled cheese sandwich.  I absolutely hated him.  It seemed (to me) that he had it so easy, could just work on projects outside, go to work, and not worry about his son or me.  Although my mom was caring for Kyler, I felt like I couldn’t get anything done.  I needed to empty boxes, pay and file bills, grocery shop, etc but felt as though I couldn’t get it done.  There was no reason why I couldn’t when I had plenty of help that week.  Subconsciously, I believe that I was so dreading my parents leaving and having to face the real world with Kyler again, that I was procrastinating and hoping that would somehow stall life.  The real story was that I didn’t want to face life so bad that I was taking everything out on everyone.  All of the yelling at Baby Daddy, all of the “poor me” conversations with my mom were really just me mad at myself for not getting it together.  Everyone has kids and survives.  What was wrong with me?

Finally, someone, I forget who first, mentioned that maybe I should talk to my doctor about postpartum depression.  WHAT?!  I DID NOT have postpartum depression.  My life just sucked, of course.  But, it didn’t.  I had a beautiful new house, a handy and helpful husband, and parents who were a blessing…I also had a healthy baby boy.  Why did I insist that my life was so bad?  Then, someone else mentioned that maybe I should consider talking to someone.  Again, I was offended.  I think when the third person (maybe my mom) mentioned that I was acting a bit out of control, I finally decided to mention it to my doctor.

Ok, I’ll mention it….although I do not have postpartum depression and I’m not taking any stupid anti-depressant that is going to make me fat.  I didn’t need medication – I thought it was ridiculous for people to take antidepressants anyway…  Finally, one afternoon after completely losing my cool with everyone and again realizing that I wanted NOTHING to do with my child, and coming to grips that my parents were leaving in two days, I did call the doctor.  They suggested that they would call in a prescription for me but that I still needed to come in to see my OB.  I was very concerned with the side effects of taking medication and thought that I probably wouldn’t take it anyway but at least I called…  When the nurse mentioned that it may cause weight gain- FORGET about it.  The last thing I needed for my “bad moods” was to gain weight.  I’d surely fall into depression then.  Regardless, I picked up the prescription in good faith but was not going to take it.

I did, however, go to see my OB.  My reasoning is actually hilarious yet sad.  I thought that if I cried enough and explained my sorry life to her that maybe somehow she would make it all go away.  Well, in a sense, she sort of did.  I did cry…but my tears were real.  I felt stupid and pathetic but let it all out anyway.  The important part was that she didn’t appear to judge me in the least.  She sympathized with my situation and comforted me in a way no one had been able to up to that point.  She “diagnosed” me like it was certain and no wonder I had been acting the way I had been.  I couldn’t help it.  The best part was that she did prescribe something for me (something different than before) and it changed my life.

Perhaps, I should have been much less judgemental of all the people on antidepressants.  What did I know?  Well, I learned quickly that if you are fortunate enough to find the right one for you, it may make all the difference in the world.  And it did.  Immediately.  I finally admitted that I did have postpartum depression and I wasn’t embarrassed to say it aloud.  I was also comfortable with admitting that I was treating it with medication.  Maybe it is just in my head and the medication really didn’t do all that much?  What I do know is that I still take it and wouldn’t dare stop.  I’m not going to go into detail about what sort of changes I felt or what I’m taking.  I do want to encourage anyone reading this who feels similar to the way I did to talk to someone, preferably a doctor.  Be open-minded.  I do not feel that I am healed.  I believe that maybe depression will always be with me somehow but I do feel better.  Over the past year since I was originally treated for postpartum depression, my husband has faced many potential layoffs with his job (fortunately, he still has it), we were transferred across the country to a state where I know no one, and my little Kyler (to whom is now absolutely BEAUTIFUL and in no way an alien) is now starting to show a developmental delay.  The latter situation is testing my strength right now.  I have been able to deal with selling and buying yet another house, moving far away from my family and friends; but this new issue with Kyler is very hard to deal with for me.  Hopefully, we will work through it but I am admitting that mentally, I’m losing it a little again. 

Well, if for nothing else, maybe someone reading this feels or felt similar to me and can either get help or at least relate.

Speech Delay and Omega 3’s & 6’s (Week 1)

So this week, we started Kyler on the Omega 3’s & 6’s, AKA fish oil, for his speech delay.  I want to keep a journal/blog of weekly progress.  I’m in a bit of a hurry tonight but I will quickly note any differences (positive or negative) that we’ve seen in him.  He has been on this supplement for seven days.  As of this week, the following changes in speech and behavior have occured:

Positive:

• Almost immediately started babbling the “da” sound.  Not everyday or all day but almost everyday.
• When in very playful moods, we heard many babble sounds such as goo, gi, da, boo
• One day, it sounded like he was using “goo” (like good minus the d) for book.
• He has also started using “gi” for truck.  He immitated us for this sound as well.
• Most notably, his eye contact and attention span have seen much improvement.  His speech therapist also was impressed in the change over the week.
• He fed himself with a spoon for the first time.
• He played “splash” in the bathtub and enjoyed his bath.  (Usually, he does not like baths.)
• He started to play “ball” with us by standing at the top of the stairs throwing the ball down to us.  We would then say, “ready, set, ball” and throw it back to him.  He seemed to thoroughly enjoy this activity.

Negative:

• Loose stools but that was already happening with him
• Not willing to rock in order to calm down for nap or bedtime.  He was very energetic and I would have to put him in his crib awake and let him cry a minute or two and then he was asleep (not necessarily a completely bad thing).

All in all-  It was a milestone marking week with a little more sounds and better attention.  Coincidence?  Perhaps.  I’ll update next week hoping to have more sounds!

Baby Blues or Postpartum Depression (Part 3) Crashing

It was Kyler’s 2 week birthday and my four year anniversary with my husband, Baby Daddy.  My MIL volunteered to keep Kyler for a few hours so that we could have some time to ourselves.  She thought maybe we could go to dinner or to a movie.  It was a nice gesture but I had so little energy and motivation that all I wanted to do was crawl under my covers and NEVER come out.  I felt guilty for letting someone babysit my infant this young.  My family members would surely have something to say about it.  I DESPERATELY wanted her to keep him though.  I was so incredibly thankful but pulled the “oh, you don’t have to do that” line.  Fortunately, my husband had enough sense to insist that she keep him. 

It was supposed to be for the best but it turned out to be for the worst.  What was left of my mental stability came crashing down as soon as we dropped him off at her house: uncontrollable tears, terrible thoughts about running away, even wishing for something bad to happen to me so that I could go back to the hospital.  I didn’t want to leave him with her because I didn’t want to have to get him back.  My husband kept assuring me that he would be ok with her…thinking that I was sad and worried to leave my baby.  I finally explained that my tears were because I didn’t want him back.  EVER.  We went straight home and the two hours that they kept him were the fastest two hours ever.  I just laid in bed and prayed for the ability to disappear. 

It was at this point that I wondered if something more than the baby blues was happening to me.  Was this postpartum depression?  I convinced myself that I was just feeling sorry for myself and that I needed to buck up.  Unfortunately, I was mentally and physically unable to buck up…things got worse.