2 blogs in 12 hours…
I have my reasons for being so “vague” in my last posts. Sometimes it is to protect Owen, so he doesn’t have every piece of his life out there for the world to see and dissect. Sometimes it is to protect me, so my choices and thoughts are not out there for the world to pick apart and judge.
When you have a child with “mystery symptoms”, it is easy to become overwhelmed, scared and paranoid that someone is going to think the worst and judge your decisions.. or even worse, turn you in for medical abuse.
There have been so many cases in the news, just in the last 12 months, of parents being turned in by hospital staff due to their children having unexplained illnesses or “mystery symptoms”. Some parents were found out to be the actual cause of the childs illness and are rightly brought to justice. Some parents to be are found innocent and the child really ill, but still going through the pain and legal system that followed such accusations. I do NOT want to be one of those parents.
My daughter was born with a congenital hip defect, her hip had formed out of socket. The pediatrician was suspicious of the “click” her hip made in the hospital the day after her birth. By the time she was two weeks old we were in the office of an Orthopedic surgeon getting things set up for her to wear a brace. She wore this brace for 6 weeks, then was placed in a full body cast for 4 months. At the ripe old age of 11 months, she had her cast removed and her hip has been fine ever since.
During this difficult time, I was also in the process of finalizing my divorce and having to go to court for all the family law things this entailed. It was because of her cast that I was accused in court, by the Stovers, of Munchausen By Proxy, they claimed I had caused Marissa’s hip defect by abusing her in the hospital. When that didn’t work, they accused me of making it all up and having the cast placed “for attention”. The doctors were made to write a deposition and prove through medical records that this was a birth defect and NOT inflicted by any person.
The full body cast put pressure on Marissa’s little tummy, causing her to have some digestion problems aggravated by acidic foods. For some reason, the other family kept insisting she eat baby food that had tropical fruit in it, orange juice and various other acidic foods. She would throw up on them, or cry nonstop during her visits, which always was followed with them accusing me of “making her sick” or “causing her to thow up on demand”. I underwent psychiatric evaluations to prove I was not Munchausen By Proxy. I documented every small detail of doctor visits, at home happenings, every fall, scrape, bump or bruise. The local Marshall was at my house at least 10 times to follow-up on their accusations. Try as they might they could never prove me an unfit mother, but the fear was set deep in my brain. The seed of fear had been planted.
Now, I tell you this… not to make you feel sorry for me and what I went through at the hands of my ex-family. No, I tell you this story to show you that I am TERRIFIED to have to go through this again. The fear of having a child removed from my home and placed into foster care is my Post Traumatic Stress syndrome.
When Owen was so sick with his digestive yeast infection, at age 3, I was once again accused of Munchausen By Proxy. Dr. Johnson had me physically removed from his office because my “suggestion of digestive yeast was preposterous!!”
Fear set in and almost paralyzed me, but because of Owen’s pain, I finally reached out and found Dr. Habersang who believed me, had Owen tested and confirmed our suspicion.
Fear… fear is a huge factor in continuing with my search.
I have researched to the point of exhaustion and happened on to an illness called Limbic Rage. (Episodic Dyscontrol Syndrome). It is similar to the HH I initially thought Owen had. It causes the same rages, same absence seizures, same strange fevers and tremors, same hot flashes and angry outbursts… all of it. It is in his limbic system, so usually a plethora of anti seizure medications are experimented with before the doctors may find one that helps on a minimal level. BUT… it has recently been discovered that Limbic Rage can be treated with, up to, 90% effectiveness with…. medical marijuana.
I feel very strongly that I have found a possible reason for my son’s strange mysterious illnesses. I really think this is a possibility that needs to be explored, and once he has been officially diagnosed I can start getting him the medications and help he needs. I could even get a prescription and go buy my son some Medical Marijuana. It’s not legal in Texas, so I would be breaking the law.
Fear is the paralyzing factor once again.
How far does a parent go for her child? How much can I risk?
So, there ya go. There is the deeper explanation on Owen’s illness diagnosis and what I have been trying to handle and decide all in secret.
If you have strong feelings about the use of medical Marijuana and wish to berate me, judge me and tear me apart.. do so in your own blog where I will not see it, Please. I do NOT need any more negative thoughts than what I already inflicte on myself on a daily basis.
If you are a loyal “Stover Supporter” and feel that they were misrepresented in this blog, feel free to unfriend me and move on with the words “TWO SIDES TO EVERY STORY” stamped on your behind.
If you have any information regarding the Medical Marijuana community, or Limbic Rage syndrome, ( Episodic Dyscontrol Syndrome) please leave a comment or email me at Robynt_s@Yahoo.com