Here is an "I Hate Autism" kind of Post

I hate Autism because its causes me even more difficulty getting a 3 year old to eat.  There are days I want to throw my hands up and tell him to starve.  I throw enough food out in a week to feed a Family of 4.

God forbid I run out of chicken nuggets (like I did today)  my son won't eat.  He will eat about 1/2 a cup of vegetables and scream for an hour over the thought of eating something as Insane as a Hot dog.  From a therapy standpoint I should ignore the behavior or just keep at it till he eats, but we forget that Daddy is not home at dinner time and the one year old in the high chair will start chiming in the minute the boy starts screaming.

Nothing is more awesome then a 3 year old and a one year old screaming in harmony!  SO he ate some vegetables after practically vomiting up the finger nail size piece of hot dog and then i dismissed him because I cant handle the screaming and throwing yourself off a chair thing anymore.

Little Miss Piggy calmed down and ate her dinner, plus Frankies hot dog and his vegetables......

In Over My Head?

Yes, that picture might be appropriate for how I feel.....trapped under a chair.  I've been hiding out, posting status updates grumbling about something and happy about others.  I haven't been able to put many thoughts into words recently.  I was baking the other day and I messed something up......it liquefied and turned into un-usable mush.....that's how my brain feels. 

I wrote about the Celiacs, they say the intestines looked fine, to keep feeding him normally.  I saw a Nutritionist yesterday, a good one too.  She works hand in hand with our Doctor and they are recommending this low protein diet for kids with this gene mutation Frankie has.  For the first time through all of this I felt very uncomfortable, stressed and literally wanted to throw in the towel.  I sat there for an hour discussing what to feed him, how to cook it, how to manage it......yet I just feel like I cant.

I have an overwhelming fear right now.  I know not everyone here believes in a high power but I do.  I'm starting to see the big picture in Gods plan and its killing me.  I was never one to be organized, read directions, follow directions, or follow through on anything.......its just not me.  I fluttered around happy as a clam just going with the flow and then BAM!  Now i have to be all of those things.  I can only see it as Gods wake up call.  I have said it before, my Son saved my life from a life of waitressing and heavy drinking...I had a great time, but if he wasn't here I would have ended up one of those crazy broads with the deep voice tending bar in my 50's......ok maybe not but that was a huge fear!  So now this is placed in my lap, I need to organize, follow and read the damn directions, write everything down and follow through for the REST of his life....super.


So 14 grams of protein a day and not all at the same time.  Frankie's chicken nugget dinner is 14 grams.  Somehow I need to get this kid to eat more starches and carbs, which will be a BATTLE.  I throw my hand up, I have no frigen clue how I can get this kid to eat pasta.  He sobs if you make him try anything different, flailing arms, thrown plates juice everywhere....all because you asked him to try a new food.  God Help me. 

Latent Celiacs Disease.....Im a big ball of confused.

So I haven't been blogging much.  I feel like my mind can only be in one or two areas at a time, and in the last few weeks it has had to be in about 10.  Birthday parties, car insurance, doctors appointments, blood tests, endoscopy's, school meetings......just too much for one brain to handle!

Well, we got the intestine biopsy back.......it was negative.  There was no damage to his intestines....meaning no Celiacs in there.  What the GI Dr. said was that it probably is  Latent Celiacs Disease.  Basically he has the antibodies for Celiac, but his intestines are not damaged. 

I have two choices, keep him on Gluten and retest in 6 months or just put him on GF diet now and forget retesting.  I'm waiting for the Pediatrician to call back just because I don't know what to do.  My son doesn't eat a lot of Gluten to begin with so I'm not even sure if in 6 months he could have a positive Biopsy again.   I feel confused. 

Today Was One of Those Good Days

 

Call me crazy, but I think there is something to this Diflucan.  I am a doubting Thomas, so doubting that I read the vaccine books and vaccinated the kid anyway.....oh damn you doubt!  

I doubted ABA and that worked, I doubted pre-school and it seems to be working, hell I doubt myself everyday and I seem to be doing ok with all this.  So when the Dr. mentioned the Diflucan over a month ago I was hopeful but tried not to get too excited.  

As you all know we started Diflucan about a month and a week ago.  Two weeks in Frankie started speaking in some full sentences and his poop got better.....then the medicine expired ( long story, I had no idea) and those things went away.  Now a week into a new Rx of Diflucan that is not expired and he is spitting out full sentences that make sense again.  This morning I had to pick the boy up at school because I didn't get the Dr to sign a paper saying he could return to school.  So to the Dr we go to sign papers and drop the boy back off.  In the car a little voice pops up "Mama, I want to go home"......um no you are going to school but THAT WAS A GREAT SENTENCE!  woo hoo!  

He went back and a few hours later I picked Boy wonder off the bus.  Like I do everyday I pick him up, give him a big kiss and like clock work "Did you have fun at school" comes out of my mouth.  Everyday he just repeats it back to me, some days he says it before I can.  Today was different, today I asked "did you have fun at school" and Frankie said Yes.  I asked "what did you do?" (which is also parroted back) but today he answers "I painted leaves".  My my, the boy talks!  

He continued to chat it up here and there in little sentences, then he runs over to the stove and yells "Mama, Look its New CEREAL!, I want new cereal!"  New cereal is anything that is not chex.  I let him have 2 bowls of new cereal because I was so happy he was talking. He went on to have 2 slices of bread, 10 Ritz cracker and a rice cake.....all because he asked.  

Again, my doubt will probably disappear.  To think Yeast could effect you in such ways is crazy.  We shall see, can not wait for the weeks to come!

The begining...

This is the beginning of us trusting the medical community to help our son.  Many of us moms fear putting complete trust in the doctors, especially after the Vaccine issues we see.  My optimistic heart doesn't blame the doctors, I blame the pharmaceutical companies mainly.   I blame greed and money and constant (false) re assurance that the vaccines are safe.

So now, after the blood has been drawn its time to fix things.  I wonder if my son was born with  Autism, or did these medical issues cause the Autism.  Were his medical issues exacerbated by vaccines.....these are things I will never know.  So as you all know Frankie has a very high probability of having Celiacs Disease.  The only concrete way to diagnose Celiacs is to do an endoscopy.....which is scheduled for Thursday afternoon.  The next finding in the work up was a gene Mutation on his MTHFR gene with a Heterozygous C677T mutation.  It would be a bigger deal with it was Homozygous because it would be on both strands and more of an issue, but this still causes some issues with nutrition and Proteins.  Next stop on the Dr train is a visit to a RD Nutritionist to figure out the EXACT amount of protein Frankie can eat per day.  Last big thing was elevated levels of crap in his blood that shouldn't be so high....our main examples were Ammonia and Lactate......so this brings us to a Metabolic Specialist to figure out why he is no metabolising these yucky things.

My last blood work observation was the Measles Titer.  Of course the doctor will not say anything about this but.......his Measles antibodies are 6x higher then what the average is.  I don't have much to say about that but.....if it lives in the gut that is pretty screwy.

I will try to be updating the blog medically daily, or at least after every Dr appointment.  Its nice to be able to keep family updated with out having to make 20 phone calls.  After a while explaining the same thing over and over gets upsetting.  Till next Thursday, this is Dr. NT Mom signing off :)