A note from Annie Adkins - February 27, 2011
Jazmyn Renae was born May 14 2004 with bi lateral sensural neuro hearing loss. Because of this she was seen at a very early age by doctors and specialists at Children's Hospital and OSU and fitted with double hearing aids at 8 months old. We took her to the doctor and they began running test. We ended up taking her to Children’s Hospital to see an oph
thalmologist where they ran an MRI and decided to do a biopsy. At age 2 she had surgery to attempt to either remove the mass that was found in the MRI or to diagnosis what exactly it was. While doing the biopsy the doctor found that the mass infiltrated the good muscle tissue in her face and was unable to remove any of it due to not knowing what was good tissue and what was the mass and in addition they had never seen anything like it before. The sample that was collected was sent to pathology where cancer was ruled out but it was diagnosed as a plexiform neurofibroma that is indicative of Neurofibromatosis. (NF-1)
This is a disease where there is no cure, no real conclusive treatment and very little known about it currently. The goal for Children’s in Columbus was wait and see what it does. Have an MRI done every 2 yrs and see what happens. We decided that information was not good enough for us and we needed to do some research. I found out that Cleveland Clinic has a Neurofibromatosis team so we scheduled an appointment there to see Dr Moodley who is the NF team head and a top pediatric neurologist at Cleveland Clinic main campus. Dr Moodley did a complete physical exam and wanted to schedule an MRI but also said it was a wait and see what happens type of thing. While waiting for the MRI to be scheduled we found out that Jazmyn's state insurance does not cover any thing done at the Cleveland Clinic because it is out of the network for the insurance she has. So back to the drawing board or internet I went. While researching I came across a Dr doing clinical trials for an all natural liquid being used on NF 1 and cancer patients alike to reduce the masses and was receiving a 98% success rate in the studies done in rats. I contacted Dr. Maruta regarding Jazmyn. He agreed to allow her to be part of the study. She now receives Bio 30 once a day until she reaches 55 lbs where she will receive it 3 times a day. Bio 30 comes from New Zealand bee propolis and costs us 14 dollars for a bottle that is 25ml. We are not sure if it is helping but she has not had any ear infections, eye infections or any other issues since she has been on the serum so it can't be all that bad and with a minimum price to pay we continue to do it. In November of 2009 while doing additional research I found that Mayo Clinic in Rochester, Minn. also has a NF team and they are one of the leading hospitals in the world for the research and treatment of NF. We would love for Jazmyn to be seen by the doctors there but Mayo does not accept her insurance and they would like $23,000 for her to be seen and for numerous MRIs to be done. In addition to all of this Jay took Jazmyn to the eye doctor for a regular check up this past week and Dr. Silone saw her and then also requested Dr. Davidoff to come over for a consult as well. They say she has 25/20 vision in her right eye, which is pretty typical for 6yr olds. But what is more bothersome is that she is over compensating with her left eye because the mass is around her right eye, so she is at risk for developing a lazy eye and would like to see some of the bulk on her right eye lid gone so they are referring her to Dr Katz (an Oculoplastic surgeon at OSU) who we will see March 14th to discuss surgery and all of our options. In addition Jazmyn was taken to the dentist a few weeks ago to receive her 6 mo check up and cleaning and the dentist informed us that her right 6 yr old and 12 yr old molars are in cased in the plexiform neurofibroma as well and will not move down on there own therefore needing a oral surgeon consult as well. We are hoping to contact Cincinnati children’s hospital as well due to the fact they are #3 in the world for Neurofibromatosis research and treatment.
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