These past 8.5 years have been taxing not only for Lola but our entire family. Due to the amount of damage suffered from seizure activity during the encephalitis the central cortex of her temporal lobes and a decent chunk of her cerebral cortex suffered brain atrophy ( the brain tissue died from lack of oxygen) shown below in the follow up MRI she finally received in 2016.
All of Lola's doctors left the hospital she has been under care with since this all started and left us with nothing other than the statement that still haunts my brain " We have to wait until it happens again"... Anytime Lola get worse than a cold we are in the hospital. For her anything worse than bronchitis ( Parainfluenza 3) can cause encephalitis. Today almost 9 years later we have been shown a glimmer of hope. By the grace of whoever I have gotten in contact with a doctor in Malibu, CA that can heal her. This is where we need your help. We literally just need help with our flight and the procedure. As most of you who know me know I am a single mom and have been tackling this mostly on our own. I can't sit back while the only information I have been given is we have to wait. Lola's learning disabilities due to the atrophied areas is starting to fully inhibit her ability to learn in a normal learning environment.
NO child should have to go through this let alone anyone at all. As debilitating it's been to deal with it has helped make us stronger, but let me tell you the thought of her not dying anytime she gets a fever is a surreal thing. Please help me so I can help her.
Thanks for reading if you can't help its ok. Every little bit helps even just sharing our story.
Love and Light Always,
Lola and Nicole <3
April 19, 2011 - The Beginning
Walking into the ER at All Children's hospital ; not for the first but second time and only being told, "Lola has had more seizures..." These are the words no parent wants to hear and most certainly not from your crying mother getting you out of school to inform you. At the time I was in school at the AVEDA Institute for Massage Therapy and Esthiology so we were two blocks from the teaching hospital. This all began April 19, 2011. All thanks to a common viral infection known as Parainfluenza 3.
Upon arrival to the hospital I ran into her room where I walked into my beautiful 14 month old baby girl convulsing uncontrollably and being injected with valum, being held and strapped drown. She screaming....everything is beyond chaotic. Everyone is there but no one has any idea what is happening to Lola. I was informed later they had documented around 50 mini seizures (petit grand mal). "We need ativan STAT!" one of the male nurses called out to the people at the nurses station. Oxygen mask administered, and after administering the ativan the heavy duty seizures (grand mal seizures) seemed to subdue themselves for the time. IV's set phenoytoin going and ativan on stand by for now and an MRI, CT Scan, Lumbar Puncture, quarantine, and admission to 7N ( the seizure monitoring wing ) and our new life had begun.
We were informed Lola had an arachnoid cyst on her left frontal lobe on her anterior cranial fascia , has contracted some sort of encephalitis and was status ellipticus ....
Encephalitis- Encephalitis literally means an inflammation of the brain. In most cases, this inflammation is caused by a virus. Encephalitis is a rare disease that occurs in approximately 0.5 per 100,000 individuals "” most commonly in children, the elderly, and people with weakened immune systems (e.g., those with HIV/AIDS or cancer).
Although several thousand cases of encephalitis (also called acute viral encephalitis or aseptic encephalitis) are reported to the Centers for Disease Control and Prevention (CDC) every year, experts suspect that many more go unreported because the symptoms can be very broad
Arachnoid Cyst-Arachnoid cysts are cerebrospinal fluid-filled sacs that are located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord. (http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cy))sts.htm)
Status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure.
After admission the seizures hadn't stopped. That evening Lola had three insane episodes that lasted until the next day. She exhibited every seizure one could document. Fosphenytoin going in her IV and phenytoin levels were upped three times and my baby at that point couldn't stop the absence seizures which led to full blown generalized grand mal. She now at this point was refractory status epilepticus and I thought I was going to lose her, multiple times. At that moment they decided to induce phenobarbital coma.
After 2 CT Scans, 3 MRI's , 3 Lumbar Punctures, they found from a nose culture (which they didnt think to do first and insisted on mutiple LP's on my 14 month old) that Lola had what is called Parainfluenza 3 Viral Encephalitis. "What the hell is that?" you may be asking your self, I asked myself the same question.
hPIV-3 as been closely associated with bronchiolitis and pneumonia and principally targets those aged <1 year.
We have all had this....but not in our brains. Immediately Lola was ordered what is called an
Intravenous immunoglobulin (IVIG) is a blood product administeredintravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from theplasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major disease categories:
Immune deficiencies such as X-linked agammaglobulinemia,hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring lowantibody levels.
for 5 days on drip. They also added acyclovir to that. And within a few days she stopped thrashing violently, acting completely raged from all of the anti-convultants, and I could start to see my baby again, but she was different. She couldnt walk. We were told Lola had lost half of her life in that week and a half. It took her a month to use her left hand again and we were placed on a speech waiting list and
and with an outpatient in home therapy program called Early Steps located directly across from the hospital. Until Lola turns 3.
Lola seized clinically for 5 days, and sub-clinically for ten months after with primary seizure activity in the temporal-frontal regions and then ending in her occipital lobes. She was on Phenobarbital, Dilantin, and then Lamictal.
At 18 months old (Sept 2011), four months after we left the hospital Lola was diagnosed with with:
-Developmental Articulation Disorder 315.39 (severity not able for determination at that time because of expressive language delay),
-Expressive Language Disorder 315.31 ( severe),Pragmatic Disorder (associated with her expressive language delay),
-Mixed Expressive-Receptive Language Disorder 315.32 ( moderate to severe)
-Developmental Coordination Disorder 315.4.
Children with developmental coordination disorder have difficulties with motor coordination compared to other children the same age. Some common symptoms include:
Delays in sitting up, crawling, and walking
Problems with sucking and swallowing during first year of life
Problems with gross motor coordination (for example, jumping, hopping, or standing on one foot)
Problems with visual or fine motor coordination (for example, writing, using scissors, tying shoelaces, or tapping one finger to another)
I have found most of this out on my own as the information was not properly delivered and I just received this in June 2013.
After exiting Early Steps Lola was placed into a special preschool here for children with learning disabilities. This school NEVER received her diagnosis', even though it should have gone with her file since they are all in direct correlation with each other. Just two weeks ago I recieved an IEP evaluation for another meeting to be held where they wrote word for word verbatim the same diagnosis' she was given at 18 months but is now almost four years old.
We have been to the hospital 5 times in the past two and a half years with about two months of admissions 4 times for parainfluenza and once for an ear infection because Lola gets 104-106 fevers, paroxysmal seizures, and her former neurologist said she is susceptible to contracting encephalitis again.
We are awaiting her proper evaluations and proper diagnosis testing now at Miami Children's Hospital. As a parent with what I know right now and what else could be possible it's absolutely terrifying.
I want to make sure this never happens again. With that though unfortunately money is needed and that I have none of. I began working from home when everything hit the fan with her medical issues but it is still not enough. I owe $3000 dollars for her medical paper work alone.
This is for us to make it down to Miami. I have no idea how long we will be there for but we are being admitted on the 13th of November for diagnosis testing. If I can reach my goal that will be able to keeps us going til we figure out what is going on with my baby. I have to rent a car as mine will not make from Tampa to Miami safely and food alone is insane. I have dropped every penny I have and ounce of energy to get this far. Help me to the finish line so we can beat whatever is harming my child. I never want to have to bring her into a hospital again.
Lola and Nicole
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