Basic Info About Us & factors leading up to the Autism Diagnosis

     A little about me. I am 42 years old, have a son who is almost 23, a 4 1/2 yr old little girl, and a 2 1/2 yr old little boy. Life has thrown quite a few curve balls since the birth of both babies. We lost one child  at about 8 weeks along, ten months before we found out we were pregnant with our daughter, Sophia. Twenty one months after her birth, we gave birth to my son, Asher. I am currently in college full time online at Lee University. I attend their ministry program, and will receive a Bachelors in Christian Leadership with an emphasis in Christian Counseling in a little over one more year. Previously, I attended college for 3 1/3 years and my major was Biology with an emphasis in pre-medical sciences.  I also write Christian poetry and worship songs. I believe the link to my poetry blog is connected to this blog as well. I can assure you that you will find something to lift your spirits, and will more than likely be on page 2 of my blog. I personally believe it fits in rather nicely with this blog, if you ask me. Currently, I also sing on our worship team at my church. To say I am a busy mom is an understatement! My children are at home with me all of the time. I do not leave them in a daycare, just due to the severe allergies my son suffers from.


     Now for the in depth info. My full journey really began with my daughter. I will give a brief history, and get into more detail in another blog, because I do believe without a doubt there is a connection between my health problems over the years, her illnesses, and the progression with illness in my youngest child. She had severe acid reflux, to the point where I had to carry 3 changes of clothes for myself and six changes for her everywhere. I kept seeing evidence of what I thought was asthma, especially after a round of RSV, pneumonia, croup (ongoing problems since birth with croup), and a really bad ear infection. I was pregnant at the time, and had horrible aches in my joints in addition to the round ligament pain generally experienced with additional pregnancies. The soles of my feet were in excrutiating pain at night, which I would later find that is a symptom of Hashimoto's Thyroiditis.  It was so severe I had to crawl to the bathroom in the middle of the night. My daughter would have problems vomiting in her sleep with the reflux and would also have seizure like episodes, so she slept in the bed with my husband and I. I had many of the same problems experienced in my second pregnancy, nothing severe. I had polyhydramnios where there is too much fluid in the amniotic sac. I had nausea, headaches, and elevated systolic BP, and mildly elevated diastolic BP. More to come on this subject in a later blog, as mentioned above. I had a flu shot during this pregnancy that I regret immensely.

     I had an amazing OB. She delivered both babies via a scheduled c-section. My son was my only scheduled c-section. He was born at 37 weeks and 1 day. He immediately had trouble breathing and his chest was retracting badly. His coloring was off and appeared bluish in color. I was told he would be out in a few hours more than likely. Those few hours turned into 11 days. There were times where my husband and I were so concerned that he wouldn't make it, and it did not help that the neonatologist couldn't tell us whether he would live or die. His oxygen levels were worse than all of the premies in the NICU, and he was the only one full term and 7 lbs 12 oz. He developed an infection in his blood that they decided was pneumonia, his lungs were underdeveloped, he was severely anemic and had to  receive an emergency blood transfusion, and he had two holes in his heart (small). He was recently given an all clear on the holes in heart! :-) We placed the scripture from Jeremiah 29:11 on his incubator, and just believed that he would come out of that NICU. It was a very difficult time for us.

     My son came home as a happy, healthy baby, was nursed for 3-4 months, and hit his milestones as expected. We did refuse the hepatitis B shot in the NICU, because he had so much going on, we did not want to add to it at the time. He received his vaccines up until around 10 months or so, which was his late 9 month shots. I believe this was after his peanut allergy reaction, but unsure right now until I check his records further. He decided to grab his sister's peanut butter apple snack, and decided he loved it, so his daddy gave him more. Within 5 minutes, he began breaking out all over in hives, and by the time we got to the hospital, had a runny nose, was coughing, and eyes were swollen a little. They immediately gave him an IV with an antihistamine and a steroid. He was fine afterwards. I decided that the advice the dr gave me to get a RAST test wasn't enough. I did not want to do an elimination test, but felt that he needed an allergist. I had a skin prick test performed and sure enough, he was highly allergic to peanuts, but the other pricks for berries did not show up. We've had about 6 episodes to date just due to us learning as we went along about the severity of his allergy, but also in learning how to read labels and in learning that most restaurants he cannot eat at. The scary part is that the histamines build up, and each reaction becomes worse. His second reaction was everything they warned me it would be. We still have no idea what it was he ate to produce the reaction he had. We kept our home peanut free at that point. My son reacts by touch and breaks out in hives if I just kiss him and have peanut butter on my mouth, and he reacts by ingestion, so his allergist warned us that he will probably have an airborne allergy as well. I know of course not to eat peanut butter at all anymore. We read labels, we call companies. I make everything plain, seasoning free. I also found out through his allergist that citric acid allergies can be associated with peanut allergies, but doesn't usually show up on tests. Also the acid that berries, plums, cherries. and grapes contain. He reacts to everything except one particular type of apple, pears, and bananas. All other fruits causes him to break out from head to toe. He is allergic to egg whites, and we found this out by him grabbing an egg shell out of the garbage. I believe it also causes his eczema to worsen. He is allergic to garlic, severely allergic to dogs, dust mites, trees, and grass. Basically, everything outside and what is inside too. His pneumo levels are elevated which puts him at risk for asthma and pneumonia. His eosenophil levels are elevated which indicates a possible disease of the gastrointestinal tract.

Now to the autism. My son kept breaking out from all types of food and his eczema was so terrible. People noticed he was overly clingy to me, and threw out of the ordinary tantrums for a 1 year old. I ignored it at first and was quite offended, thinking my own mother was calling my child spoiled. It wasn't until April, when a friend mentioned that he has autism in her opinion and that I should get him checked for it. I began to research and many things all started to just click. I had just finished having him testing by early intervention and he passed, but said if he was doing the same thing in a few months on the test for their next age group, he would be considered very delayed in his speech. As I researched more and more on the peanut allergy, and saw the correlation between the peanut allergy and the autism, it freaked me out a bit. I would never click on that link until the friend mentioned the autism. I knew there was something possibly off, but never really ever thought it would be autism. Not my child. Of course this isn't something that happens to someone who loves God and serves him. Hmmm. lol!  I was wrong, and of course those thoughts are fantasy anyway, because we all go through trials, whether Christian or non-Christian. I took him to a developmental pediatrician and also applied for disability for him, since I knew they might possibly send him to their own doctors. His eczema was severe, his peanut allergies and all other allergies as a whole had caused us to be in and out of the ER. I made the choice to stay at home because he woke me up all night itching, and still does occasionally when it is really flared up. I tried to work for five days, but there was no way I could continue. We lost a huge chunk of money, and my husband had taken a cut in pay, a promotion, and then a job loss. He began another job, but it was at half the pay. So, if you figure my income was gone of about $45,000, and then cut 55k-65k down to $16 hourly , that is what a family of four with no assistance was making it on. We did qualify for medicaid which has been a blessing, and a curse too in a sense. Basically, we've operated off of 1/4 of what we originally made, but with more illness and more needs. Yes it has been a tough one, but I know in my heart staying home with my son has been the right decision and I still stand on it.

     The pediatrician I just knew would diagnose him as being on the spectrum. You would have to know me to understand that because I do have almost 4 years toward a biology degree and I am a researcher at heart. When there is a problem with my kids, I make sure I walk into a doctor's office well researched, well informed, and ready to ask any needed questions, and to refute anything if needed as well, ... in a kind, non-aggressive manner of course. It is never good to be at odds with a dr if you can keep from it. I believe in keeping the peace, because what they write in that file could either help or hurt your child more. She asked his dad and I a bunch of questions, threw the ball to him, had him stack and line things up, asked him questions, played with him, and checked for eye contact, which he did have. She told me on the next visit, that he did not have autism, nor was he on the spectrum. I told her I am sure he has PDD, and he obviously had the speech delay. I sent her quite a few links to youtube videos I made of his insanely bad meltdowns, him banging his head into the floor and walls, him picking food up and feeling the texture and throwing it back down, and him doing odd things such as placing his sister's hairbows and odd objects into a fresh pitcher of iced tea in the fridge. I would find blankets in the fridge, food in odd places, or he would take entire bags of sugar and flour and dump them in the floor. It did not matter what I sent her, because she apparently did not watch over one of them, and made her decision. My youtube account reflected there were no hits on the other videos further down the list, so I knew she didn't see them all, which was so needed for the proper diagnosis. Disability ended up sending my son to their own dr, which was a psychologist. Before I left, he told me his diagnosis was ADHD, Autism, OCD, PDD, Sensory processing disorder, and slight Asperger's tendencies. While I was in the office and both kids were climbing the walls, moving his ottoman around the room, climbing to the top of the couch to try to pull a painting off of the wall, and then both taking off out of the room to run up and down the halls with me chasing them, he looked at me and said "oh... your daughter has a bad case of ADHD as well". I just laughed and said "yes, I figured", and he proceeded to tell me how my hands were full! I am a strict mom, but it is a challenge with these two, and I have learned to pick and choose my battles carefully. I've been back to the dr once since the diagnosis, and lightly mentioned to her that he was diagnosed as being on the spectrum, and she made no comment.
   
     My son started speech therapy, and we are awaiting occupational therapy. He goes twice a week and it has helped tremendously. His pediatrician put "temper tantrums" as the reason he needed a referral. Yeah, not much to say on that one. Needless to say, they rejected that reason, so I am taking him back next week to see her. His recent visit to the allergist prompted him to say he needs a referral to a gastroenterologist, and that my son's ailments were pretty consistent with other autistic patients he has. My son is a mild case compared to other's I have seen, true, but he is doing so much better with the therapy. He went through a point in time where it was hard to get him to make eye contact, unless I called him about ten times. He still does that occasionally.

     So, what are the symptoms my son had leading up to all of this you ask?

-Severe and mild food allergies,
-waking all night
-crying for long periods of time
-inconsolable
-hitting, biting, pulling hair, throwing, throwing entire kid tables over into floor
-hiding in corners and sitting there
-doing odd things such as hiding in a box in a random place and sitting in it
-spinning in circles for long periods
-hand flapping, mild
-looking out of corner of eye while tilting head to side (stimming). some of the above examples are stimming as well.
-leaning over with head, hands and feet all on floor with behind in air for a good bit of time
-there didn't really seem to be a regression in speech so to speak, but it was more of a dropping off of learning additional words. It just came to a standstill more or less.
-jibberish
- putting words together that do not make sense.
-repeating words from memorized commercials or cartoons.
-stuck on or fixated on particular shows or items
-freaks out after on a short time in public and has tantrums beyond the normal type a child typically has
-Sometimes will play with kids in a sense of running with them and laughing, but after a few minutes if I check back, he is sitting by himself playing with a toy on his own away from others.
-Wants to watch tutorials on youtube constantly on our IPAD, about how to do play doh molds or put together model cars. Yes, they are actually adult tutorials for collectors of toys. It is quite boring, but he can watch it for hours. CRAZY I know! He is stuck on Sponge Bob too and the meltdown lasts forever if we turn the channel.

There are many factors that I've found which I believe contribute to autism, and create what they call "a perfect storm", for it to develop. Just a few are vaccines, lyme disease, yeast overgrowth in gut, intestinal parasites, heavy metal toxicity, processed foods and dyes, GMO's, magnesium deficiency, and vitamin deficiencies.

That is all for tonight, but there is alot more to come, so stay tuned and come back!

Blessings,
Leigh