The Struggles Of Rylie – Guest Post By Michele M.
Our story starts three years ago this month. Rylie started coming home from school complaining of things being different colors. One night she announced that I was blue!!! I have a history of migraines and am a nurse myself, so I was familiar that there was a form of migraines that only effects the vision, an ophthalmic migraine. Just to be sure, we went to the doctor and the optometrist, who confirmed my suspicion.
However, a few months later in December, Rylie came home from school and soon after started vomiting. This lasted for hours on end, not like the typical stomach flu she may occasionally get. She vomited for 12 hours straight. She finally dozed off and in the morning, seemed better, keeping down fluids, etc. She was tired, of course, so she dozed off in the recliner. Meanwhile, my house filled with lots of 10-year-old little girls for my oldest daughter’s slumber party. I thought it was odd that she was sleeping through all their chaos. I was in the kitchen and looked over at her all of a sudden sitting straight up in the recliner, just staring. I talked to her and she said nothing. I walked over to see if she was okay, and she continued to just look at me, saying nothing with a very odd expression on her face. I realized something was very wrong so I hollered for my husband. He rushed in and she continued to do this same thing, just staring, not talking. I called for my mother to come stay with the other girls while my husband and I rushed her to the hospital – we live seven minutes from there.
On the way there, she started smacking her lips and doing this weird puffing noise with her mouth, something I remember seeing my mother doing clearly with her seizures. She started crying, which was music to my ears. It took some time for her to come out of this while at the emergency room…she was very confused, didn’t know where she was or who we were for some time even!!! The doctors confirmed they felt it was a seizure too and to follow-up with our family doctor, as she seemed fine after a few hours there.
We followed up the next morning with our doctor, who referred us to a neurologist. She placed Rylie on a low dose of a seizure medication, and Rylie did fine for several months. As time went on, Rylie started having a lot of visual disturbances, sometimes losing her vision completely, sometimes associated with headaches now too. They finally decided it was time to put Rylie in the hospital for some tests. The MRI of her brain looked fine but the EEG detected epileptiform waves, which are seen in someone who has epilepsy. At last, a definite answer!!! They increased her meds and she did fine…for a few months, again!
We then started seeing a lot of cognitive issues at home and school too and a lot of very odd night time symptoms – at one point she was getting up in the middle of the night and being lost in the house, unable to find us. We frequently found her wandering around confused, and we had to resort to reinstalling the baby gates we once had up to keep her off the stairs. The doctors finally decided to switch her meds…and guess what, she was great for a few months again!!!
We continued to see this same pattern each time they increased the medications or changed them. She was in and out of the hospital three times as they tried to gain control of her “epilepsy”. At one point, they had Rylie on 15 pills a day to control her epilepsy, to the point that they had her in liver toxicity from such a high dose and their neglect to check the med levels!!!!
Rylie could not even walk, she was so out of it from the meds and the constant “seizures.” It was at this point, I sought out another neurologist, one who was highly regarded. His immediate opinion was that she did not have epilepsy but had a complex form of a migraine (?!?). We continued to work with this doctor, even allowing him to stop all her meds cold turkey, which is extremely dangerous in someone who has epilepsy. But we were so desperate to see if his theory was correct. She had become a zombie on the meds, her hair was falling out like she was on chemo, and the cognitive issues were at an all time peak!!! She missed more school than she was actually able to go to at this point.
They admitted her to take her off the meds abruptly, just in case something happened. Of course, she was fine for the five days she was there. Within two days of coming home and being on just a med to prevent migraine, the episodes started all over again…and continued to escalate. We quickly became frustrated with her neurologist as he had me in tears each time we were there, telling us our daughter was “fine” and we needed to “move forward.” Wonder how he would have felt if it was his child having these episodes and someone telling him his child was “fine.” I was ready to move on to a new neurologist, but the one I wanted to switch to had no appointments available until January!!!
It was then that I knew I was going to have to take matters in my own hands. I have some medical knowledge, of course, being a nurse, and so I just decided to spend every waking moment researching and trying to find the answer myself!!! I was convinced it was some sort of vitamin deficiency or something she was eating that was causing her issues.
I came across something one day about artificial dyes. Of course, I had heard about how these dyes were supposedly linked to problems in children, especially those with ADHD. After continuing my research though, I started reading about other children that had somewhat similar symptoms at times. Rylie by no means ever demonstrated any ADHD symptoms, but she most definitely just seemed to have every other neurological symptom at one time. And her symptoms actually continued to escalate, actually appearing as if she may have had a stroke at times…with numbness and tingling on one side of her body, slurring of her speech, and her face drawing on one side. I decided to take her off of dyes for a week or so, hoping maybe it would help. She has now been off of artificial dyes for six weeks, is off all seizure and migraine meds, and continues to be symptom free!!!
I am, of course, ecstatic to have an answer finally and to see her thriving once again . . . seeing more and more of my child come back every day!!! However, I have to admit, there is part of me that is very angry – angry with all the doctors and nurses that didn’t take us seriously, misdiagnosed her, and drugged her to the point that she was unable to even walk!!!! I have thousands of dollars of unpaid medical bills that I have no idea how we will pay for and I am angry!!! Why didn’t the doctors ever suggest we look at her diet at some point? Why does the FDA allow these poisons to be put in our food????
I felt I had to tell my story, my story that fortunately has a VERY happy ending for my daughter!!! I still want to stand on my roof top and scream to tell everyone what they are feeding their children, and to get them off those poisons. I wish there was something I could do to make the FDA realize they must do something!!!! If at least one person reads my story though and I can help someone that way, that is great!!! I am so happy to have found your wonderful site…thank you so much for allowing me to share my story!!
Congratulations to Michele for figuring out what her daughter needed! I’m grateful for Michele’s guest post because I think it will really make people think critically about traditional care for their children. It’s okay to ask lots of questions and treat each doctor on a case by case basis. Michele’s story fits perfectly with next week’s Child Health Day observation. Please share this post with as many friends, family, doctors, nurses, and teachers as you can! If you have any questions, high fives, or pats on the back for Michele, please post them in a comment here.
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