Who may you ask is my Hero? My hero is my son, a person who at five years old truly suffered in order to save himself and my family. He is still dealing with many medical issues, but he wakes up BRIGHT AND EARLY and starts his day. He has a silent illness. The kind the other mothers look at me and say”Well he doesn’t look sick?” but he is, he has chronic pain, horrible impulse control, anxiety to the point he can’t leave the house some days. It all started in December of 2014, after being sick numerous times with strep, ear infections, the flu you name it he caught it! He began acting out and had a hard time focusing, so I took him to an ADHD consult and he was diagnosed with ADHD, Sensory processing disorder and was struggling with academic information in pre-school( Still didn’t know, colors, numbers, letters, and many other things). My daughter had also been diagnosed with ADHD, Anxiety, and ODD and had been on medicine for three years, so I thought no big deal just another family member to add to the bunch. I had even been diagnosed this year as having ADHD and Anxiety, so I just assumed they pulled the short straw in the game of DNA. Little did I know just how bad of year we would have…..
My son was put on a non-stimulant medication after failing on a stimulant that at the time my daughter was doing okay with. Within days, I was on the phone with the psychiatrist saying I didn’t think he was doing good. I had just recently had C-diff and was hospitalized for over a week and was told to give it to him for another week…so I did what most mom’s do, I listened to the doctor. The week went on, he became an impulsive mess, punching kids lunch boxes at school just because, not sleeping I was frustrated and burnt out. The doctor and I decided it wasn’t a good fit for him and I was told to just “STOP” his medicine.So I did, even though my medical background and my mommy’s gut gave me a little red flag that said ” DONT DO IT”! The next day he was even more not himself, and I just figured it was from not getting his medicine. By bedtime, he had literately looked like he was withdrawing off of cocaine. I know it is the worst visual, but its a real visual, he was withdrawing and it was bad. He never slept that night, neither did I, my box of BP cuffs and other medical tools came out and I wrestled him ALL NIGHT keeping him from hurting himself. He was coming of 10x (also known as guanfacine) which is a very popular drug and a low dose one at that.
That morning I called my pediatrician as my son’s psychiatrist would not call me back, she agreed he was in withdrawal because I was supposed to taper him down (which we were never told to do). He ended up having to be rushed to the children’s hospital for hypertension and had a five-hour episode after being given Ativan. He was transported to Bradley hospital for “observation” we were told. When we got there we noticed nothing to monitor, just a mattress in a room. We were told we had to leave our five-year-old and someone would check on him every couple hours and take his vital signs, and there was a nurse in the hallway all night. He had been heavily sedated by this point and was lifeless. His blood pressure was dropping lower and lower by the hour and my last promise to him was I would be right here and not leave him. IT WAS A MOTHERS WORSE NIGHTMARE…..We were removed from the hospital, as we had signed something in the midst of wrestling our son and trying to keep him safe. I felt helpless, I cried on the steps of Bradley hospital for hours, when he woke he had severe separation anxiety. The doctors attached to his already growing list of diagnosis, and now for a week he would stay there with us only being able to see him for and hour a day. In my gut I again knew something just wasn’t right…he has never hit me or hurt me, and I knew he was in pain, he was suffering.
A good friend had pointed me in the direction of PANDAS/PANS and he fit every criteria for it. They tested him for Lyme with the basic testing insurance would cover. He came back negative and positive titer for strep. I was told that all the titer said was at one point he had strep and that didn’t mean anything. He was moved to a partial unit where he would do half day program’s learning how to deal with his new found ” separation anxiety” and behavior. Our nights were at home, but they were exhausting, we never knew when he would explode or flare up. We didn’t know what was causing it, the medicine had been long gone, his reflux was getting worse as well, it seemed as if the two were connected. So we added Zantac, and still no relief. Over eleven specialist ranging from the allergist, neurologist, GP’s, psychiatrist, Occupational Therapist and four months of countless behavioral therapy and occupational therapy, and he was miserable. He was in pain, grunting all day, and I was told everything in the book and had to fight for what little tests he did receive. I didn’t stop though I knew it was something connecting the stomach pain and the behavior, but everyone thought I just couldn’t accept the diagnosis. But I could if he had been showing signs from birth, but he hadn’t.But this is what I learned in that time that finally started to help his both kids symptoms.
*Both children has yeast overgrowth like me they had all of the symptoms just were not coming up positive on the test….
*He also had parasites, as his behavior was changing a couple days before a full moon.
*There was a connection between his gut and the symptoms of behavior.
*I learned there was a gene mutation that can make you a undermethylation and an over-methylator which can cause food intolerances and many other issues.
My husband didn’t buy it, he thought by this point I was trying to give him a diagnosis that they weren’t because I just couldn’t let go. He felt I had given a new diagnosis each week, and was looking for some things. But then….
Our older daughter started having severe reactions to her ADHD medicine, life changing reactions and she was begging to have her world fall apart like my son. I became THAT MOM the one who spent countless hours online reading every article under the sun.Have I lost you yet?
If I haven’t here comes the good part, I started piecing things together. I gathered all blood work EVER done for all three of us and I found tons of vitamin deficiencies. So I started them on supplements they did well. Then BAMMM…. we were back into another flare, anxiety, lining things up, separation anxiety and now I had two going through a mess and now times two kids.
I HAD given UP!!! I WAS TIRED !!! After one long night awake still reading books on the human body…my son came downstairs and said ” I know mama you’re doing the best you can, you will fix me!’ and I cried, I cried because we were losing him again and I didn’t know why, and now losing our daughter, and I wondered this whole time was she sick as well but the symptoms mirrored that of ADHD from the begging and maybe this was why no medicine ever worked for her.I tried everything taking him off supplements, putting him back on, looking at boxes better, nothing was working. I noticed we all were getting congested, I thought oh great now he is going to get a cold or strep again and I had already done so much up until that point. I had:
Cut out all dairy
cut out all gluten
no salicylates or nitrates
no ADHD meds, especially with benzo’s
no reflux meds.
What else was there to do? I finally stumbled on a connection…. Histamine Intolerance…both kids and I had every sign, and it had to do with yeast, and bacteria overgrowth in your small intestine, and what you ate. It was all connected!!!! I knew it but our pediatrician looked at me like I was crazy. As of currently both kids are still struggling but in my heart I know were on the same right path.So continue on my journey as I uncover why my children are so sick and how I beat Aspergers and ADHD instead of just masking the symptoms!