The Struggles Of Rylie – Guest Post By Michele M.

Hi, my name is Michele and I am the mother of Rylie. We live in a small city in South Central Ohio. Rylie is nine and has had three years of hell that I have now attributed to artificial dyes!!!

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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What A Difference A Year Makes – Guest Post By Stacey

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Comments
9 Responses to “The Struggles Of Rylie – Guest Post By Michele M.”
  1. Belinda says:

    Brava Michele for doing everything you could to figure out the true cause and for making the change. It is deplorable that the government condones additives which have been proven to be harmful and cause altered behavior. I have taught my children from a very young age to avoid foods with colors and preservatives. I throw birthday parties for my children without serving any packaged food so that the kids won’t go home feeling awful, and in good conscience I know I haven’t served up anything sinister. More parents need an awareness of what they are feeding their kids and how they could avoid labeling their child ADHD if they would read more labels.

  2. Thank you, Michele, for sharing your story.
    My son suffered seizures, too (non-epileptic) before we changed our diet. I love hearing about mothers solving the mysteries behind their children’s afflictions by sheer force of will. We are powerful, because we will stop at nothing to help them.
    If we keep sharing our stories, maybe some day people will recognize these additives for the poisons they are.

  3. Write to manufacturers, support retailers who stock natural items, write to legislators, and continue to educate on a local level to other parents at school, gym class, etc. I vote with my dollars, and no longer frequent places that we can’t eat at (except McDonalds. I NEEEEEEED my sweet tea!)
    And the kicker is those meds were probably brightly colored too!

  4. Steph says:

    Wow! I’m so happy for you and Rylie! Your story fascinates me and makes me angry. As I was reading it I thought, I wonder how many of those medications had dyes in them. Stories like yours are a powerful tool and I hope someday soon this country will wake up to the dangers of dyes.

  5. Stacey says:

    Thank you for sharing your story. After removing dyes from my daughter’s diet (I wrote the last guest post), I was amazed when I told my pediatrician about it and she had never heard about the connection. I hope that doctors start making the connection. I even met a teacher this weekend that specializes in working with kids with ADHD. She too had never heard of the link. Amazing how those that we rely on to be experts are so in the dark about the connection. I am so happy for you and for Rylie. I hope that other parents in a similar situation find the answers they are looking for as well.

  6. Michele M. says:

    Thank you everyone for all your kind words and support!!! Sharing her story has helped me have some closure with things, altho am still going to do all that I can to continue to help raise more awareness of these poisons that are in our food, medications and even hygiene products. Not long after I started seeing a change in Rylie after being on the diet, I did look into the medications she had been on in the past 3 years, and all but one of them had some sort of artificial dye in them, including the one pill I was giving her 15 pills a day of!!! Unbelievable they are using these dyes in our medications so much!!! Am so thankful for this site, it was one of the first I came across while I was researching, will be eternally grateful!!!! So amazing to have my Rylie back, the Rylie we have been missing for the last 3 years!!!

  7. Maggie says:

    Hello Michele, first of all: I’m so glad to hear that Rylie is feeling better!!! Thank you sooooo much for posting this. My 5 year old has the EXACT same symptoms and the doctors are trying to do the same thing with her and just increasing the medication every time she has a “seizure”. I’m so fed up with them and after researching all over the internet, have just started a few weeks ago to keep all the food dyes and MSG out of our whole family’s diet. She has been acting so much happier! I haven’t found a neurologist yet who agrees that food additives could be the cause of this, but reading your story gives me so much hope!! I can’t thank you enough. Best wishes, Maggie.

  8. Stefanie says:

    Good for you Michele and yes I am very angry myself with the world of medicine. My son also has dye issues and it took me being fed up with the medical world and schools to find what was causing the disruption in his life. He feels the same way you do….wants to stand on the top of the world and let everyone know what these poisons are doing. I can not believe these chemicals can stay on the shelves knowing what they are doing to our bodies. Take Care and God Bless you and your daughter.

  9. Karen says:

    My son (2 1/2 years old) has never been allowed to eat anything with artificial dyes in it beyond those found in medications he’s had to take from time to time when I couldn’t find an alternative. My motivation for this was the fact that we were flirting with a possible autism diagnosis due to various developmental delays (he’s really come a long ways now and is almost “caught up”!) and wanting to do/try everything possible to help him. I’ve been shocked by what I’ve learned artificial dyes can do to some people… stories such as your daughter’s. I am so sorry your family has had to go through this, and I’m glad she is doing so much better. Thank you so much for sharing your story. Sometimes I feel myself wavering in my no-food-dyes decision as we’ve never personally experienced problems and I see some of the social costs and not being able to do things with him that are such nostalgic memories from my childhood. Also, many people around me think I’m being too paranoid and over-controlling. Stories like yours help me to keep my resolve to do what is best for my son.

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