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!!!!!!

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.

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!

Speech Delay and Omega 3’s & 6’s

As I’ve posted before, Kyler may have a speech delay.  He has begun therapy with Early Intervention and I think that it will at least give my husband and I a few ideas of how to work with him.  Unfortunately, I just don’t think that once a week with a SLT is enough.  I’ve sought out private therapy and will be meeting with someone next week for an evaluation.  I’d like to get some sort of idea of what is causing the delay.  EI doesn’t diagnose; so they are just there for support and ideas. 

I’m a control freak and absolutely cannot stand the helpless feeling I have with Kyler and his speech issues.  Lately, I’ve really felt like I’m getting postpartum depression all over again…or maybe it’s just depression this time.  ??  I desperately want to hear my baby say Mama!  He used to say Dada and YumYum but now I’m struggling to get any babbling.  We were so incredibly happy, thankful and relieved when he finally said Dada (at 12.5 months); so when he stopped, my mood tumbled fast!  I’m heartbroken over this.  I know that he’s still very young but I can’t help but worry.  The problem is that he never began babbling.  Most babies fumble upon mama or dada very early on but don’t know what it means.  Later around a year, they say it with meaning.  Kyler never babbled at all…at all.  He has just recently started making sounds other than grunts.

Of course, the internet has information on everything so I have just been going to town searching for possible answers and solutions.  My husband absolutely freaks if I mention autism.  I just think we need to be real because he does have a few other red flags (wheel spinning, not responding to his name, not talking).  The more I research and really watch and listen to Kyler, I’m beginning to believe that it isn’t autism.  He is trying to communicate with us and DOES understand many things that we say.  Perhaps his lack of interest previously was due to my own inability to sit and entertain him for very long.  He had to learn to be independent early on.  Anyway, so I’ve really been working with him and I do see some positive things going on although still no words or even much babbling.

So, to the internet I go for more research.  I came across childhood apraxia of speech.  I have MUCH more research to do on this but I do see many symptoms in Kyler of this condition. I’m definitely anxious to hear what the private therapist thinks about it.  At any rate, I’ve found where many parents have supplemented their child’s diet with fish oils containing Omega 3’s & 6’s and have seen vast improvements in their children’s speech (and behavior).  Of course, I’m sure it’s not a miracle drug..actually it isn’t a drug at all and is completely natural.    I hate to give myself false hope but I’m starting Kyler on supplements.  I mean if for nothing else, they are very good for children and adults. 

Yesterday, we gave him one gelcap.  The dosage for an adult would be about 6 in a 24 hour period.  Ironically, that very afternoon, he was making much more eye contact and more noises.  Obviously, it was just a coincidence.  This morning, I put one in his breakfast…I heard “da” faintly about 10 times today.  Coincidence???  So, I’m keeping my fingers crossed and praying that this is going to help him as well.  I am also working very hard on incorporating the EI’s suggestions into our daily routines.  Maybe I’m just more aware of what’s going on…nevertheless, I got a few babbles today!!!

I’m very interested in hearing from anyone who has had experience with a speech delayed child and the supplementation of Omega 3&6.

I’m going to update this in one week to see if there are any more improvements

…..keeping my fingers crossed….

Meet the Teacher Day with my Difficult Toddler

To manage my sanity, I decided to enroll Kyler in a Mother’s Day Out program one day a week.  We recently moved to Texas from Florida so I don’t have any family or friends to help out if I need to go to the doctor or run errands.  Baby Daddy and I thought that the Mother’s Day Out program would be a good way for Kyler to interact with other children and for me to get a little relief.

Today was Meet the Teacher Day at Kyler’s new school.  We were all prepared with our “impress the teacher” outfits.   I was on time, my child looked adorable, and we were ready to meet the teachers…  I’m always very anxious during outings with Kyler because he is so temperamental.  I don’t know why but he is always the one to not want to be in a stroller, or not want to be held, or not want to be set down.  It’s so embarrassing but I am persistant to try over and over to get him out and about hoping that one day he’ll behave in public. 

When we found his classroom, there were already several other children and parents standing around talking to the teachers.  My anxiety level was increasing as Kyler started to fuss…I cautiously took him out of his stroller and encouraged him to play on the floor with the other children and toys.  Whew, he did it.  Ok, now it’s time to meet his teachers.  I told myself that I would NOT tell his teachers about his presumed speech delay because I worried about them labeling him.  My big mouth, however, spouted it out immediately as I introduced myself to one of the nice ladies.  Much to my surprise, she comforted me by explaining that her daughter had a speech delay as a child and that she was very aware of how to work with children in need.  I was relieved…until I read that she is the teacher on the two days that Kyler is NOT in school.  GREAT, on to meeting the other teachers….

Meanwhile, Kyler was playing fairly well.  He was noisier than the other children with his grunts and “Aaahh” sounds but having fun.  So, the teachers informed us that there was a parent meeting in the auditorium and that we could leave our children in the classrooms with them if we felt comfortable.  Kyler appeared to be having a good time so I snuck out.  Twenty mintues later, after the meeting ended, I was headed down the hall to pick up my child.  I was feeling great…accomplished even.  We had successfully handled a day out in public and having him at Mother’s Day Out was going to be a good thing…….

Oh no.  I hear screaming.  Recognizable screaming.  Children’s screams sound similar – right?  Some poor child is not happy.  The closer I was to Kyler’s room the more sure I was that the scream I heard belonged to my son.  Indeed it did.  He was fine when I left him; I know he was.  Surely, she’s going to tell me that he was fine the entire time until just now.  NOPE.  I rescued the poor teacher and took Kyler into my arms.  He was crying so hard that he could barely breathe.    I apologized profusely to the teacher.  She said that he was fine for a few minutes after I left and then just lost it and they were never able to console him.  She said, “Oh, don’t worry about it.  It will take them a few times to adjust.  If we can’t handle him and he continues to cry, we’ll call you.”

Why do I have this feeling that the $200 non-refundable registration fee is money flushed down the toilet???

As soon as I got him out of his classroom, I realized that I had forgotten to give him his juice.  If you know anything about me, it is that I am scheduled.  Predictable.  This child of mine was as scheduled as can be and needs his juice or other meal right on time.  How could I’ve forgotten to leave them with his juice??  I hurriedly found it in his bag and gave it to him.  And he was calm……….

Well, one day down but many more to come.  I’ll write about his first real day of school which is not until next Wednesday.

Depressed yet devoted

Everyone wants their child to succeed.  How to deal with an imperfection??  My 14 month old is not talking, barely babbling, and usually only grunts.  According to most statistics, he is delayed in his speech.  With all of the autism controversy, it’s hard not to wonder…is Kyler autistic??  Granted, we are early on in this speech delay but it is still scary.  Not to mention, it is so frustrating.  We are working with a speech therapist and I’m so anxious to get results.  It is so hard to look at my perfect baby and know that there is a possibility that he may not be so perfect.  God, how I love him.  But, God, how I want him to communicate.  It’s so stressful working day in and day out with a fussy child trying to help him learn to communicate with no results.  I’ve always been an instant gratification type of person…a controlling person…and a bit of an “OCD perfectionist”.  I NEED him to talk to me.  PLEASE say Mommy.  Please say DADA.  SOMETHING.  We (my husband and I) have been trying so hard yet all of the trying with no progression just leads to bad moods, attitudes, and feelings towards each of us.

I thought I was past postpartum depression.  Why do I feel like I’m quickly falling back into this black hole?  My need to control every situation is obviously not met.  I cannot make him talk.  I cannot make him understand me.  I WILL continue to work hard with him.  I WILL continue to not self diagnose.  I WILL begin to pray more.  I WILL admit that no matter what, I am blessed.  Life could always be worse.