Kyler is almost 4 months old and has just been diagnosed with Wests Syndrome, which is a very rare and dangerous form of epilepsy.
Since before kyler had been born, we knew we were going to have a few hurdles to jump, being as through ultrasound it was found that he had Agenesis of the Corpus Collosum and the left and right ventricles were enlarged. Then an amniocentesis was done and found that he had such a rare chromosome abnormality that it had never been reported or researched to be able to pinpoint what we were going to be facing when he was born. We were advised that there is a chance that he could develop Autism and have seizures due to the combination of Agenesis Corpus Collosum and chromosomes abnormalities. We just had hope and prayed for the best, while trying to remain positive.
Kyler had a pretty smooth transition into the world and just dazzled everyone with his gorgeous complexion, sweet little face & laid back cool personality.
12 hours after being born, Kyler had to be transported to a Childrens Hospital to undergo thorough testing. He was diagnosed with many things that weren't serious enough for us to have to stay for (we just had appointments to schedule with specialists and close monitoring) however, he was held in the NICU for 6 days due to having enlarged adrenal glands that could've been a life threatening condition called CAH. Luckily, the results came back normal and we were able to take our bundle of joy home.
At just 9 days old, I was to start giving him vitamins due to breastfeeding. When I started giving him drops through a syringe, he got a taste of it (which is NASTY) took a deep breath in and started to choke. Severe panic took over as we put him over our shoulder patting him as he was choking. After calling 911, fire department & ambulance showed up and took him to the ER for distress. He was on monitors, X-rays were taken to ensure there wasn't any liquid that had gotten into his lungs. Luckily, we were able to come home that night.
We then went in for a hearing test in November that he had to have due to failing the one he had when he was born, results were that he has moderate to severe hearing loss in both ears.
Things started to go a little smoother through November & December, besides normal things like controlling gas and adjusting formula. I started back at work & Kyler started at a sitter. Then, at the beginning of January, we started to suspect seizure activity (seizures in infants are very different than in adults) so we took him to the ER at a children's hospital where they didn't suspect anything alarming and scheduled him for a 24 hour video EEG test a few days later. By this time, I had returned back to work just 2 weeks before Christmas, (which was very challenging as I am an overnight manager of a very large retail chain) after a very long 24 hours, the neurologists informed that he was not experiencing seizures and assured us that everything was just fine.
Then, things started to go downhill. Kyler became sick towards the end of December, his pediatrician put him on an antibiotic to treat an infection in his sinus area. It seemed he was starting to get better, then about a week 1/2 later we noticed he was coughing and wheezing really bad so I took him to the closest ER one morning after work. They did tests, took X-Rays, tried breathing treatments and monitored him but could not figure out what was going on due to all their test results were coming back normal. They knew however, SOMETHING was wrong because his coughing spells and breathing was just horrible. So, they decided to transport us to the childrens hospital. There, they started to do more testing and monitoring. We were admitted into an isolation room because they were thinking he could of possibly had Pertussis (Whooping Cough) or RSV. He was put on oxygen and had IVs running. Test results came back showing he had Rhinovirus (common cold) which he then developed Croup while in the hospital. He was put on steroids and by Sat. Jan. 17th we were sent home and to closely monitor him. I went back to work for a week, then we noticed his cough wasn't getting better, but maybe even worse. So we took him back to his pediatrician and he was diagnosed with Bronciolitis. They sent us home with a nebulizer for breathing treatments (albuterol), steroids, Zantac, antibiotics and had to give him Tylenol for fever and pain.
He finally started to show signs of getting better, so he was finally able to receive his vaccinations at 3 1/2 months and had his checkup done, he's gaining weight great, however behind on development, either from being sick or maybe from his medical conditions (Dr is unsure) either way, we were advised to start on therapy ASAP and he gave us some information. Poor little guy just not able to get a break right? As we were snuggling him and giving him TLC from the shots givin, I was planning to go back to work when our world was about to be flipped upside down......
I am a very observant (sometimes a little too observant) person and I'm always reading and learning what I can online about his medical conditions. Which yes, you have to be careful what you believe and read on the Internet, however, if I did not learn what I have from the Internet, we would've been clueless to his diagnosis.
I started noticing that something just wasn't right. For 2 days, I watched him closely and was watching videos and reading info about seizures. I started taking MULTIPLE videos of him when I thought he was having one. This time I was SURE he was having them, but wondering if I WAS just freaking myself out. I called my husband while he was working and even told him that 'he was going to think I'm crazy, but I think Kylers having seizures.' Before he got home, my mom came to our house to visit and I shared with her my thoughts and showed her the videos. She was kind of skepticle and told me to try not to think so negatively. Then, as she was holding him, he started having one! I started videoing the episode and she then witnessed what I was trying to explain. When my husband got home, I could just see sadness in his eyes as I showed him the video, as we all are hoping and praying for the best, at the same time, you have to be prepared if things may take a turn for the worse. We decided to take him to the ER, but at a DIFFERENT children's hospital this time. When they were running tests, watching him and looking at my videos, they decided to admit us. Feb.18th Wed. Morning Neurologists came in to examine him and decided to do a 1 hour EEG and run a bunch of tests checking him head to toe because he had never been to 'this' specific hospital. But, the Neurologists was already telling me that they were pretty sure he was just having 'tonic reflex' and it was normal. I already felt myself getting hot! Thinking 'I'm not crazy'!! Later in the day, the Neurologists came into our room and said 'well moms always right, the doctors don't know what they're doing' I was wondering what she meant by that....well, the EEG results came back showing he IS indeed having 'infantile spasms' (a form of seizures which is a form of Epilepsy)
I think I went into shock after that, I was relieved that they knew what it was and that I was NOT crazy, but devastated of the outcome. He was started on medication that day and they let us know it was very important to have a brain MRI done immediately so treatment could be started ASAP. He had to be sedated for accurate images, so it was scheduled for the following morning. By this time, it was undeniable he was having seizures, since being in the hospital he was literally continuously having them. It really took a toll on him, he would have a couple episodes, eat then sleep, nothing more, he was so worn out.
The next morning, sedation and MRI went smooth, caused him to be even more lethargic and slept all morning and afternoon. The Neurologist and Neurosurgeon came in with our results from the MRI......turns out, his brain is in a much worse state than we were told by the other childrens hospital. Along with Agenesis Corpus Collosum, instead of just 2 of the 4 ventricles being enlarged, 3 of them are, he has what's called Chiari Malformation and some other irregularities in the brain.
We were informed by the Drs that this is why 'the common cold' had him down so bad for so long. When he gets sick WITH ANYTHING, it's 10X harder on him than a child his age without his condition.
We've been home now for 2 days and he's not showing any signs of improving yet. The Drs told us we might have to tweek the medication dosage or even change to another medication, but he may not show signs of improving for up to 2 weeks. Our goal is to get the seizures to STOP. In the meanwhile, we have to closely monitor him for signs of getting worse, look for other kinds of seizures happening and side affects. Mom and dad are just absolutely drained, emotionally, mentally and physically...but we have to remain strong for him and his 13 year old sister, who is also, going through challenges of her own (which is a whole nother story)
SOO, (deep breath) this is where everyone's help is needed! My paid LOA through my employer is excausted, however, I am not able to go back to work through all of this. I have to setup all kinds of therapy appts, medical appts, apply for disability for him and unfortunately look into life insurance for him (his very rare condition could be fatal) We are losing ALOT of income with me not being able to work. We make too much to qualify for Medicaid, WIC, food stamps and most govt. funding. Our insurance isn't covering a lot of things with our medical bills (even his $70 month prescription isn't covered!!!) So, as embarrassing as this is for me and my husband, we are needing to reach out and ask for help with donations. I felt awkward putting a 'goal amount' on here, but as much as we can get will help us out tremendously!!!
I know my story is LONG, but this poor lil guy has been through so much already and he deserves to be happy and healthy! He truly is a sweet sweet baby and a major snuggler!!! So I thank you for taking the time in reading my story and opening your hearts with donations!
Thank you and please keep us and our families in your prayers
Thank you for help in
- Teresa Fowler
- Patricia Tasonis
- Lauren Becker LE
- Stephen Turley
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