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!

I Want a Money Tree!

I don't have much to say other then my brain is rattling in my head and I have anxiety.  Been on the phone all day making appointments, talking Autism and talking with insurance companies.

Almost 6 months back I got asked why we would need money to help our son.  I got comments like Autism Speaks is a good place to donate money, donate buttons on blogs are tacky, the district pays for everything he needs etc. Well where is Autism Speaks when my insurance won't pay for a Nutritionist?   They will only pay for a kid who has diabetes but NOT a kid with Celiacs.  I've been arguing all morning.  A kid who cant have sugar is covered but a kid who cant eat WHEAT is not.  So because my kid doesn't have a mainstream issue I have to shell out $300 a visit?  You can say just skip the nutritionist but he has the protein issue too.....how can I know whats a good amount of protein unless I go to a nutritionist?

I'm so angry.  I'm angry because Diabetes is covered and Celiacs isn't.  Plain and simple, I hate health insurance and I hate that Autism Speaks will raise 78 million dollars and us parents who need the help will see $0.  Thanks for the Awareness

Its Happening Already

I am being a bad mom and Blogging my heartburn away and letting my kids watch Bubble Guppies.

Yesterday was Lia's Dedication at our Church.  As Christians we dedicate our babies instead of Baptise them.  We Dedicate them and profess that we will raise them in Christ and guide them so that when they are old enough to make the decision to become Christians and be baptised, they will.  After Church we had a party to celebrate the dedication as well as her birthday a few weeks late. 

That morning, my husband looked at her and said "hi Lia" and she responded "Hi Dada".........my husband looked at Frankie and said "Hi Frankie and he responded "Hi Frankie".  I think hubby is frustrated.  He wont outwardly come out and say it hurts, but it must.  It hurts that he has regressed since he started school and it hurts that My daughter is starting to pass him in some developmental areas. 

So as my title suggests.....its Happening Already.  Her social interactions are beginning to surpass his.  Today I had Parent/teacher conference which ended up being a lot more formal then I had expected.  It was worse then the IEP meeting.  At least with the IEP meeting it was the opinion of someone who saw him for 1/2 and hour, this was the opinion of people that work with him daily.  When I'm told my son is self harming himself or that he is a danger to himself by the PT or that all his Ecolalia has flooded back full force, the shirt chewing we worked on getting rid of is back also.....it can make you sick.  I'm starting a new battle with the district who has screwed up the IEP and now my son isnt getting services at home. The chair person wrote Counseling instead of ABA so she wouldn't catch shit from her boss.....well they wont let my son get ABA because it says Counseling...its all craziness and no one can answer me.  He is regressing and I'm suppose to sit here an be like OK that's fine.  They aren't lying when they say these become the fights of your life...this sucks

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 :)

Sudden sentences.

Today started out bumpy. I picked up Frankie from Grandmas and our first stop was the dr. Office for our new monthly blood draw. Now that he is on medication long term they have to check his liver enzymes monthly. It was quick, blood came out fast, maybe he is getting use to this.

Next stop, home to get some medication into little mans body. He grabbed a box of cereal and said " you get bowl?". Sure! He ate his corn chex and juice, he is so funny the way he takes his vitamins. Everyday the same way, he always eats the gummy and the vit c tablet together after he sticks them to each other. Then he eats the applesauce concoction.

Third stop, Apple store to pick up computer. He was so well behaved, he played Dora and Diego on the computers while we waited. In the whole mall experience that lasted well over an hour he only threw himself on the floor once...yes that makes me excited that he only did it once hAha.

Came home and let them play, stressed out more mentally because of all the stuff happening around me and feeling a complete lack of control. I cried, I cried on the phone, said things about my son I didn't really mean just out of pure frustration with our situation. I cried about the jumping, the stiming, the echolalia, the idea of GFCF, the fact that I don't like taking him in public alone for fear of stares.....I cried out all of my insecurities as I stare at this little boy sitting pant less on my living room floor watchin ni hao Kailan.

After all that, Frankie walks over, looks up and says " mama we have cookies at home, I want cookies at home" he says this as he is pointing to the child ahoy. I let him have 3 cookies just because I was so happy. He went on to do some dopey thing like fLl off our bed between the bed and the book shelf (thank God we have pillows there).... I hear a little voice " Mama, I fall down, I stuck in here"..... I waS so happy I took pictures....I know I know, not normal. Again on our bed, he was hiding his train Mavis under the blankets, he would say " where is my Mavis.......there is MY MAVIS!!!". These little things went on for hours.

Lastly I sat on the floor next to the couch. Frankie comes up behind me with a back massages thing and starts rolling it on my back, he says "that's on back"..... Then he does my toes " that's on toes"..... He went to every body part and told me what it was and then we switched places and I did it to him. It's hard for me to believe that Diflucan can change my child's attitude and disposition....but I'm finding this has to be more then a coincidence. He is such and angel......my Little Angel!

I Prefer Mole Hills.......to Everest

It's difficult to explain how I feel. I wanted to use the word depressed, but that's not so much it....numb? Maybe. The journey to recover your child is long and tedious, stressful and tiring. I just began and I am tired.

I woke up in January and was told a diagnosis. I was painted a pretty picture of the road ahead, a road with bumps and hills but nothing we couldn't handle with a little perseverance. I started down the road with high expectations, climbing little hills, making mountains at what now I realize are mole hills, trekking through thinking this isn't too bad this is hardly a mountain at all........ Then 10 months into your treck you are met with this........mount Everest. So what you mean to tell me was that the 10 month walk I just took was the easy part. See that person standing there in that photo.......that's how I feel. Ill equipped and shocked at the path before my feet. Sure I have some stuff, good sense of direction, clothes and a snack.......but not Everest climbing equipment.

That how I feel. I have been in a constant sense of panic since 2 days ago. Today it got worse, a mess of insurance paper work, referral slips, phone calls, faxes, cups of urine. My daughters dedication is on Sunday and I can't even be happy because i am so overwhelmed at this mountain. I have hurt people's feelings, offended others, forgot things, forgotten people. I've put Frankie ahead of everything and sometimes I think everyone suffered for it.

My baby doesn't just have Autism, he is sick on his insides. Now I face Everest, riddled with Celiacs, protien issues, genetic mutations, metabolic issues and a school district that wants to take our services away....again.

I miss those little rolling hills, I want to hug them and remember when my biggest issue was gettin pg him to listen to quiet feet.....

Dear God, don't let me forget about my daughter

I wonder how siblings to Autistic children feel. I pray everyday that I don't put my daughter second, that I don't forget her in the chaos. She has grown so fast, and I can't help but feel like her first year is overshadowed by an Autism diagnosis. Just shy of her turning 4 months old our world was changed and I began a crusade to help my son, with an infant strapped to my chest on a Moby wrap.

Sometimes I feel like I put him first, my worry, my time, my fears, all about him. Recently she has begun screaming, attention screaming. The kind of screaming that makes you cringe, all because she wants you took look at her. She is refusing whole milk and now foods she use to eat. I just keep thinking whatever she will grow out of is and get more worried about Frankies non eating and behavioral issues. My big fear is that even though she is talking, maybe she too is having sensory issues and I will miss it because I'm so wrapped up in the boy.

I love them both, just the same. I know I am a good mommy to them both, but it's a fear. A fear I'm sure many of us have even with only typical kids. I wish we got grades on parenting so I could see my performance in grade form. I pray I am a good mommy to my babies, that I never put one before the other and that they both understand the love I have for them in eternal and never ending.....even when mommy is having a grumpy day <3

Helpless and B*#chy

Today I feel helpless, usually I feel bitchy. Another note in Frankies book today, chair flipping, screaming and head slamming. 32 minutes into being home and I've been slapped in the face.....I put tv on because I can't handle him. Can you imagine wanting your child to stop touching you. 30 minutes into being home and I can't sit on the couch with him beause he is sticking his fingers in m bellybutton, doing headstands on me, pulling my hair, slamming his forehead into mine as a game.

Today is one of those days I question everything I am doing and wonder if I am doing it in vain. The supplements, the doctors, intense schooling.....is it all in vain? I never let myself think that Frankle will not finish school, go to college and get a job. I always think he will meet a great understanding girl and get married and make me a grandma. Then I have the few days like this where I wonder if that's all a delusional fantasy. He gained so much in the first 6 months of therapy and now he has plateued.....we all though he would continue to go in leaps and bounds.....now it's like tiny baby steps if anything. This is what leaves me feeling helpless.

Now for Bitchy......it's a permanent state I am in.....ok maybe not permanent. Here is an example of something that may help those parents with typical children understand. My son is in a class to teach him how to eat. My son is almost 3 and a half and he needs to be taught how to eat without flipping out. he will have a full on anxiety attack if the entree is not cereal or chicken. No amount of punishment I'll end this anxiety. Your typical 3 year old eats food, asks for food, asks for drinks, can sit in a chair and can be disciplined normally.....mine can not. I am sure I will still get some parents and strangers saying I'm some sort of push over parent and I should let my son starve, he will get the point, he just needs harder parenting and let me tell you...I AM F-ING SICK OF YOU.

So there is bitchy, sometimes little things wil set me off because it just took an hour to do something that should take 5 minutes. The constant questioning from strangers and non strangers alike makes me bitchy. If you had cancer and I questioned you constantly if you really thought chemo and radiation were the right treatment......your getting it now right? No my child is not screaming because I'm a shitty parent. Not having a table cloth doesn't make me lazy to discipling my son, it means I am tired of an entire table of things falling on the floor.

To end it all though.....is a little boy running in cirlces around m living room singing " I've been looking for a friend like you, someone, to make each day brand new and share the fun in the sun, even if a rainy day comes....."

He's an Angel....

Oh puzzles!

I'm not a huge fan of bold primary colors.....maybe that's why I was never a huge fan of the Autism Awarness ribbons etc. I'm a much bigger fan of pastels, maybe a splash of glitter, animal print anyone?

When I was pregnant with Frankie, my number one request was no primary colors, soft greens and browns please, yuck to bold reds and blues. I've said it before and I will say it again, God has a funny way of teaching me a lesson. Anything I have put down, made fun of, looked down at said would never happen to someone as awesome as me in the past........has happened......I've learned, it's not all that bad though. This morning I said if I go get an estheticians licence I will never di brazilian waxes......I will now be condemned to waxing women's crotches for life......sorry, back to topic!

So I'm finally understanding this puzzle concept. I have been frustrated lately because the Diflucan did not live up to my expectation. For a week Frankie's poop got better and then this last week it's bad again. Here I am wondering what the heck is going on!! So I sit here this morning feeling defeated, I realize this whole gluten thing must be a factor. So through some reading, it seems that Celiacs suffer from yeast infections.....so I can only think that if I keep feeding him gluten the yeast will stay. Then I realize I had been giving him the Diflucan with yogurt, a probiotic, and now I give it to him with apple sauce. So then I wonder if it's the absence of the good bacteria that is making his stomach screwy.

I feel like a detective, like I'm trying to solve some mystery and I keep taking 3 steps forward and 2 steps back. So, yes, now I see the puzzle. I feel like my son is a 10,000 piece puzzle. Honestly though, I picture Frankie as one of those beautiful landscape puzzles.....with natural soft colors.

Yo Gabba Gabba and a splash of Celiacs

Saturday we went to see Yo Gabba Gabba Live with Meema (my stepmom) and a couple friends. My sister is interning at the local sports/entertainment venue in our area and got us all tickets. If you can imagine, Yo Gabba Gabba in concert was a little over stimulating. I usually avoid those sorts of things for fear of him being overly stimulated, but all in all it went ok. I had a stupid emotional moment where I actually got tears in my eye because my son was sitting and watching the show and not crying. Had this been a year or so ago, things like this would make him cry. On the flip side it hurts my insides because he doesn't act like the other kids, he doesn't dance much, he just sat there in awe chewing his shirt......non stop shirt chewing. I'm not sure if it was because of the stimulation that he was doing it, but he soaked a shirt.

Later on that night I checked my voicemails, and to my dismay had missed two calls from the pediatrician. Some blood work had come back, and to our surprise, Frankie hit 3 out of 4 markers positive for Celiacs disease. I would have never thought it, I mean his poop was hard now since we started Diflucan so, how can Gluten be effecting him? I'm not doctor but I can guess gluten and yeast are friends so, maybe temporarily killing one can help the other. Well we have a GI pediatrician appointment next week. Till then I continue feeding him the same things.