After a lot of thought and trying to figure out how we are going to do this financially we have decided to set up a go fund me account for Hunter’s newest journey.
If you have ever met or spent time with Hunter or know his story you know that in the six short years he’s been in this world he is had a very hard time in life. We are constantly working and fighting to give him the very best life that he can have. He has been through more in his lifetime than most people have ever experienced, and that breaks our hearts.
Hunter is the sweetest child he loves with everything he has and is a very passionate and loving child. We strive very hard to show him how special he is each and every day. If you do not know our son a here is a little look into his story.
Hunter is our miracle baby, the child we were told we would never have. Six months before I got pregnant with him I was told I would never have anymore children. It was a surprise to us when a hospital visit for a very painful UTI turned into lots of blood tests and an ultrasound and I found out I was about eight weeks pregnant with him but that there was only about a 20% chance of carrying the pregnancy to term. The uterus was tilted and the placenta had only attached partially and to the back side. We almost lost him several times before he was ultimately born at 34 weeks, six weeks premature while on vacation in Harlingen, Texas. He stayed in the NICU for seven days and was treated with IV antibiotics, bilirubin light, and oxygen. We were told we could take our baby home and that he had passed his hearing test vision test along with the other tests given in the NICU. Lets just say the next two years were very hard not only for him but for us as well. He ended up being put through a battery of tests due to the enlarging of the circumference of his head, a Y shaped intergluteal cleft with sacral dimples( basically the line between his gluteal cheeks was not a straight line at the top it forms a Y and has two deep dimples on each side), not being able to keep any food down, and breathing issues. His doctor wrote and he was sent on consults to every specialist around from Neuro, Respiratory, and Gastro just to list a few. At this point the Doctors started testing for all conditions including including spina bifida, hydrocephalus, cystic fibrosis, and many other conditions- it was like a nightmare and heartbreak that didn’t stop. His pediatrician was happy everything was coming back negative, and we were so relieved. He did have to be put on a specialty formula for digestion and weight gain and also given 2 seasons worth of the Synagis shot to help reduce the chances of him contracting the RSV virus.
When Hunter was about 18 months old we started to notice that he was having issues responding and at that point we were very naïve and didn’t think that our baby could be deaf, because he had respond to sound before and if he responded that he couldn’t be deaf. We never thought that he could just be hard hearing. At two years old after pushing his pediatrician and getting no where we contacted an ENT that would see him without a referral at that visit we found out that Hunter was more than likely profoundly deaf but because at that age booth hearing tests can be inaccurate she suggested he be fitted with tubes in case it was just fluid and that we would give him a ABR while in surgery to get the most accurate results. We were crushed when the Doctor told us the news that he was in fact profoundly deaf in one ear and on the moderate to severe range on the other. We were referred to Sunshine Cottage where hunter received early intervention and his first set of hearing aids. Then we saw Dr Brian Perry at the Ear institute in San Antonio who gave us the official diagnoses of how Hunter lost his hearing. He suffers from a condition called EVA (Enlarged Vestibular Aqueduct) this was diagnosed off of a routine MRI he received in the hospital after climbing out of his crib at eight months old. We could have known this much sooner, however all the specialist never actually looked at the MRI they just simply read over the summary – that is why when Dr Perry looked at the MRI he knew exactly what Hunter had within seconds and said that the best way for him to succeed giving him back the hearing that he lost was two cochlear implants. Over the next six months he received bilateral Advanced Bionics Cochlear Implants. About six months later he had a failure and Dr Perry had to explant and reimplant one ear. We then set out on hunters hearing journey where we went the route of oral communication and we had an excellent support system at Sunshine Cottage however that did not work for our son, so we picked up and moved from our hometown of San Antonio, Tx to Houston, Texas so that he would receive an education where he would learn both spoken and American Sign Language.
In those two years Hunter had also developed insomnia where he was only sleeping 2-3 hrs a night as well as Sensory Processing Disorder. Hunter was placed on meds to help him sleep and was in Occupational Therapy for the sensory issues as well as speech therapy.
Hunter has always been one to get sick very easily with strep, pneumonia, and many other common viruses. Since he started school at the age of 3 he has missed several weeks each year due to illness.
In September Hunter spiked a fever one evening and by the next morning he was very ill. We took him to the doctor where he tested positive for strep throat and within the next few hours he broke out into a horrible rash that only got worse- over the next several days after taking him to his pediatrician and getting nowhere with his treatment plan and management of the intense itch and pain we took him to Memorial Hermann in Houston where he was diagnosed with a very bad case of Scarlet Fever and Impetigo. As you can imagine this was a major shock to his body after being on several antibiotics including the first set that caused a reaction and made the rash worse he was finally given a shot of penicillin in the hospital and was sent home with a round of second antibiotis -clindamycin. After he finished his round of antibiotics he returned to school. At that time we started to see drastic differences in his behavior. We weren’t sure if his ADHD and Insomnia medication stopped working or the exact cause of his drastically different behavior. He was starting to show signs of aggression, OCD, autistic traits, tics and had a major regression in both his Oral and ASL language skills, as well as his recognition of his numbers and letters, and his ability to write. His attention span had dwindled to almost nothing and he stopped sleeping. Hunter has had insomnia since he was two years old, and was maxed on the amount of medication he could have to ensure that he would be able to sleep all night – the dose stopped working it was like he didn’t take anything at all . We knew once again he was not going to be able to function properly with as little sleep as he was getting ( 2-3 hrs a night). One minute he can be happy and playing calmly and the next he is a different child like we didn’t know our son at all. He will break his toys or anything he sees at that point.
We started doing research just trying to figure out what could possibly be going on with our sweet little boy. We had come across a few articles describing a condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections). I’ll admit that I was skeptical because it’s hard to think that maybe something else is wrong with your child because at this point he’s had such a hard time. I sit and want to believe this isn’t happening this cannot be true because because how could my child handle something else he doesn’t deserve this. I didn’t want something else to happen to my sweet son I kept thinking why him. When a routine visit to his Psychiatrist for his ADHD medication, turned in the something more something I wasn’t prepared for. Discussing this with his psychiatrist about what was going on she said it sounds like a textbook case of PANDAS, and diagnosed him with it on the spot. She also prescribed another medication Risperidone to help him calm his nerves because at that point he was crawling out of his skin. She also suggested that we go to the pediatrician and have her run titers for strep and basic lab work and to locate a doctor who specialized in treatment of PANDAS.
His blood work came back today with very high strep numbers as well as low white blood cell count and high neutrophils.
What is PANDAS you ask.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.
At this point Hunter is exhibiting most of these symptoms.
We have been doing our research and have found two doctors who specialize in this treatment. One in Houston and one in Plano. We contacted Dr Shreenath the Doctor in Houston and he has accepted to take Hunter on as a new patient. Which is great and we are excited the only issue is that he does not accept insurance. The initial visit is 1000 dollars and 500 dollars an hour after that. Treatments can range from long courses of antibiotics to IVIG therapy to help restart his immune system. He is also scheduled with ENT to have a tonsillectomy so that he will not have strep again.
At this point we do not know what else to do besides to start this GOFundMe account to help our little guy the treatment that is needed for him to return to his happy and playful self. If you are not able to help donate at this time please help us share Hunter’s story and keep him in your prayers.
We thank each of you from the bottom of our hearts.