Help Me & My Daughter get her Diagnosis
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 kmake 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.
I'm changing my goal so I don't have to make another. I'm trying to save to go to Erwin Technical Center to be an Electroneurodiagnostic Technician (EEG Tech). I want to be able to help children like I've been able to help my daughter. After the year program I want to be placed in a great children's hospital maybe even Miami Children's. The program is $5700 and upon graduation the pay is way more than enough to support the two of us. Thanks for reading and if you donated we love you forever.
Lola and Nicole