Friday, July 29, 2016
Me Against Miralax
This post is the start of something I've been very passionate about but just recently had the time to address. It involves my, now, 9 year old son, that I'll call C. C was born a very healthy, almost 10lb, happy boy. Gorgeous blue eyes and dimples.....I fell in love immediately. He rarely cried and was always smiling. I breastfed him exclusively for 6 months. I was working full time at a bank and pumping was getting really tough in the tiny bathroom right beside the tiny lunch room. So, I decided it was time to gradually make the switch to formula. One day C was crying and having a very hard time with a bowel movement. I was rubbing his belly and holding him as he cried trying to get it out. He got a little out but his little bottom was bleeding a bit. I called the pediatrician immediately and they saw me on a Sunday morning. They have always been so good like that :) They had me try natural things like pear juice, prune juice and kyro syrup. Nothing was really working though. I believe now that even though the switch to formula initially started a case of constipation, there was a new problem. C was afraid to poop. It really hurt him. He was holding it in. I wish I had realized this earlier but at that time we just believed he was constipated. By the time he was one year old he was prescribed to Miralax and put on a high fiber diet. This was sure helping him produce a lot of stool but he was still holding it in. I had him tested for Celiac disease thinking maybe he had an allergy to gluten. That was negative. By the time he was 2 and half years old he created a bowel obstruction from holding it in. I made him an appointment with GI at Children's Hospital of Philadelphia. This doctor assured me that this was "normal" and a "phase" and to continue miralax but to add another cap full a day. It was around this time that every time C went to sleep, whether it be a nap or bed time, he woke up violently throwing up. This went on for 3 months. I took him to the pediatrician multiple times, had bloodwork done and no answers. Then it just stopped! We never knew what caused that 3 month episode. I wish I had made the connection then because I believe Miralax was the culprit and it stopped because his body was adjusting to the new dosage. A couple months went by and still no bowel movements. The blockage was still there but the old stool was becoming liquid and seeping out. He couldn't control it. C's stomach was distended. So full! He was frustrated, uncomfortable and angry. I took him back to CHOP GI. They performed an ultrasound and said that he was full of stool. No kidding, right??! Now I was told to give him a suppository every Friday. This was awful. He would run around in his diaper screaming and crying. But it came out. I was so disturbed that I took a short video of the pain my son was in. I also took a picture of the full diaper weighing a full pound on the scale I used to weigh Tanner. I took this video back to CHOP to show the doctor. This was not normal! When I tried to show him he arrogantly stated there was no need for him to see that and turned his head away in disgust. We never went back. Now C was 3 years old. He could pee in the potty but was not willing poop even in a diaper. C was now developing some other concerns. He was extremely clingy. He never wanted to leave my side. He developed a sensitivity to a lot of normal things around him. The toilet flushing, echos in big buildings, the site of a balloon, thunder storms and especially fireworks. When he experienced any of those things it resulted in a huge crying panic attack. He was having anxiety about everything. I can remember a christening party we went to and there was a sprinkler system in place in the ceiling. There were also a lot of balloons around the ceiling. We had to leave that party. C was inconsolable because he was so worried the balloons were going to hit the pointy sprinklers and pop. This was just the beginning of a much bigger problem. We switched to another specialist. I loved CHOP for Tanner but Tanner had a genetic syndrome. I felt that CHOP was great for him. But C was a "normal" child in CHOP's eyes and I don't think they gave him the attention he needed. The suppositories every Friday worked for a while but were very upsetting to us and C. Eventually he was able to resist them. The new specialist had me administer adult enemas 3 days in a row. He said this would clean him totally out so that he would be able to pass bowel movements easier from then on. That was awful! He hated it. It did clean him out but still held in the stool that the miralax was creating. Enemas became a common occurrence since suppositories no longer worked. Now C was 4. His anxiety was getting worse and so was his anger. He was becoming physically aggressive to his himself and his siblings. He would hit himself with force over and over again in his head. By age 6 he had said he wanted to kill himself more than once. I caught him punching Tanner in the face and multiple times caught him with sharp kitchen utensils pretending to use them as weapons on his siblings. During this time he was in a little Christian preschool. Everyday that I picked him up the teacher would hold C until last to she make sure I knew all of the problems he had that day. At one point he told all the kids in his class and the teacher that he had a bomb in his backpack and was going to blow up the school. Eventually I just tried not to make eye contact with the teacher. Obviously I knew something was wrong and she knew I was trying to figure it out. This was getting worse by the day. All this time he was still holding his bowels, was on a high dose of Miralax and getting enemas to poop. I did question Miralax multiple times since the back of bottle says to discontinue use after 7 days. I was assured it completely harmless. C's behaviors were very alarming. It was time to have him evaluated. In addition to all of his sensory issues he was very smart for his age. His vocabulary was amazing! He loved scientific type things and knew every detail. Dinosaurs, planets, insects, sea creatures and especially sting rays.....he was an expert. When he was first evaluated they tested him for Asperger's syndrome which was on the high functioning end of the autistic spectrum. Because he was so social and could look you in the eye they ruled that out and labeled him ADHD. That's what they label every kid that they don't really know what's going on yet. I was advised to medicate him for the ADHD but declined. So, the summer going in to Kindergarten he received occupational therapy and attended social groups with other children with similar issues and was then transferred into the school system with an IEP. We were blessed that his kindergarten teacher was very in tune with C. Instead of treating him like "the bad kid" she embraced him and helped him so much. He ended up having her for 2nd and 3rd grade too. She knew his actions were out of his control and she helped so much through the process of getting him what he needed in the classroom. C was still a bit physically aggressive with his siblings (like sticking his foot out to trip them or pulling their hair) but verbal aggression took over. Anything we asked him to do it was a fight. Brushing teeth, taking a bath, getting dressed, going to the bathroom, eating.....you name it. The first time he said "I hate you you" I cried. I thought that was teenage behavior. If we were telling him to do something he was fighting us. Big fights came when we expected him to go into a room or upstairs by himself. It didn't matter if it was broad daylight with all of the lights on. Going to bed was a bigger fight. He always needed an adult in the room to go to sleep and then he would wake up all night long in panics yelling for me. The anxiety was brutal for him and us. When C was 5 and half years old, in kindergarten and still holding his stool in I decided to look into Miralax. I was horrified when I found this article written by a pharmacist. It was titled "Getting mad or forgetful after taking a laxative? Well, according to the US Food and Drug Administration that’s exactly what certain best-selling laxatives can do to you." You can click this link to read for yourself. here. I took the article to our pediatrician immediately!!!! I was sure they would tell me to discontinue use of it now. No! I was assured it was a totally harmless, natural, over the counter drug. I left that appointment and took him off of it. Guess what? In a little over a month C was going to the bathroom regularly. I couldn't believe it. But now I still had to figure out what to do about the psychological damage he had endured. I got wrap around services for him. By third grade he had a mobile therapist, a behavioral therapist, a psychologist and a TSS (an assistant in the classroom to help him). Between 1st and 3rd grade he was diagnosed with anxiety and then he was put on the autistic spectrum (as asperger's syndrome). By the middle of third grade his therapists were quite sure he did not belong on the autistic spectrum and that he was suffering from a personality disorder. Disorders like bipolar, borderline personality and schizophrenia were being considered. His main therapist who I trusted so very much (she's one of the wisest women in the field) advised me to get a psychiatrist. It was really time to consider medication. He was scaring other kids at school, making threats and getting called to guidance counselor multiple times a week. Right before Christmas of 2015 we finally decided to try medication. This was hard. We had fought medication for nearly 5 years. It has taken months to get the right combination but C seems to be doing much better. He is on a medication for the anxiety, a mood stabilizer and a focus medication. He has admitted to hearing voices, seeing things and not being able to tell what is real and what is pretend. The therapists no longer believe Bipolar is what he has. Borderline personality disorder and schizophrenia are very hard to diagnose in a 9 year old child so they are not even trying. Instead they are treating the symptoms and medicating him accordingly. As C gets older we will eventually have a true diagnosis. Now that I'm not working a bunch of little jobs and just have one very flexible career with Stella and Dot, I decided it's time to do something about this. I started researching again and came across this article written by Dr. Mercola. In this article I found out that there have been over 7000 reports to the FDA about Miralax and these adverse effects. That's ALOT!!! The FDA has granted The Children's Hospital of Philadelphia $325k to do research on this exact matter. It also includes a link to report your adverse effects the the FDA. If you would like to report your story click here. I did a little more research and found the name of the co-director conducting the study. Her name is Dr.Ritu Verma. I called the hospital and asked to leave a voicemail with her but was given this website to report my story. I wrote a book. Even though the FDA has a warning on the bottle to discontinue use after 7 days and that there is only a approved dosage for adults, our children are still being poisoned with Miralax. It is toxic to them in these large, ongoing doses. We need to find out who is telling the doctors this is ok! Where are they getting their information???? It needs to stop! I feel like my child was robbed of a normal, happy childhood. I'm not saying he's had a horrible life so far but he has had worries and obstacles that no child should have to go through. If your child has had adverse effects from the over dosage of Miralax please take these steps and report them to the FDA and write your story to the study at CHOP with the links I provided. The more people that report these cases the better chance we have of stopping it.