New To This NMO Thing

Hello! I would like to share my daughter’s story.

McKenzie was 13 when we first were told she may have NMO. It was September 2014, when she first got sick. Her’s began with vomiting every day, like most I thought it was as stomach virus so we just dealt with it for a few days. After about 5 days of her not getting any better I took her to a walk-in clinic. They drew blood and it should slight signs of Hypylori (and she began treatment for that). After a few more days she was still no better so I got her in with a stomach doctor who wanted to do an Endoscopy. The endoscopy should mild signs of acid irritation and she was put on Nexium and taken off the medicine for the Hypylori. A few more days and she is vomiting and then the hiccups came. I believe for her the hiccups are the worse part of this right now. They will last anywhere from a few minutes to a couple of hours. After she was sick about 2 weeks I finally took her to her pediatrician. We were both concerned with it possibly being her gall bladder that was making her sick (but the stomach doctor was not concerned about that because she was to young). The pediatrician done more blood work, x-rays and an ultrasound and it all came back fine. She gave her more medicine for acid reflux. Still a week goes by and she is not better, so I call the stomach doctor again. That is when he ordered an MRI of her head. I did not make sense to me why he was doing the MRI of her head considering she was vomiting and had the hiccups but I figured I would go along with it and have it done, but to the day I am greatfull that her thought to do the MRI. The doctor himself called me the next day and said there was a small lesion on her brain and they wanted us to see a neurologist in Birmingham AL. That was probably the longest 2 weeks of our life waiting on seeing the neurologist after the other doctor told us all the things it “could be”.

In October 2014 we met Dr. Jayne Ness. After reviewing the notes from the previous doctor and hearing McKenzie’s story she immediately said that she thought she had NMO and gave me a book to read. She ordered another MRI this time of her brain and spine and done bloodwork. The bloodwork came back negative and there was no change in the MRI. So she recommended for us to just keep our fingers crossed that it was a freak one time thing. After reading the book though I just knew it was something and this was it.

That brings us up to just this past month. The same thing started again in March of this year. The nausea, vomiting and those stupid hiccups all came back. This time McKenzie was weaker than before and just had no energy. I let it go on for about a week then I called the neurologist again. Not wanting to jump the gun to fast she wanted to give it another week to see if there was any improvement. There was not actually over the next week, McKenzie began to complain about her back hurting when she had to carry her golf clubs during practice, and tingling in her legs when she would walk. Her pinky fingers felt numb a day or two. When I called the doctor back she told me for us to bring her in the following day and come prepared to stay. We went back to Children’s in Birmingham and she was admitted. More test and another MRI. The first MRI they could not do because McKenzie got the hiccups. They started her on steroid treatments. When the doctors noticed that her birthday was coming up that all agreed to let her go home on her 14th birthday. She only spent 2 nights in the hospital where she received 3 rounds of steroids and is currently taking a round of steroids until we go back to the neurologist next month.

Today, we are still waiting on the bloodwork results to see if it comes back positive or not. I am not sure if I should pray for a positive result at least the unknown would be over. Or to pray for a negative result which stills leaves us with questions.

Currently she has not officially been diagnosed with NMO we are still waiting on the blood work, but the doctors (and so do I after reading up on it) all believe that is what it is. She still gets the hiccups most every day which we have found that taking Gripe Water for infants will help with that. She is a fighter and very active. It kills me to see her feeling so bad.

Thanks to the Guthy-Jackson Foundation for all the research you have do on this rare disease.

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