At 1 year, the seizures were under control but now I was having bouts of screaming, crying and high fevers. No cause could be established.
I was virtually purple and unable to breathe when I entered the world. because I was born with the cord wrapped three times around my neck. Within hours, I began to have episodes (seizures) that the hospital pediatrician disimissed as,"Oh, that's what babies do. It's normal."
I was 27 when my first child was born. At 1 week and 5 days overdue the Dr. decided to finaly induce labor. I was admitted at 7am, given pitocin around 8am. Preped and given an epidural by the rudest anesthesiologist around 10am. Given 2 more doses of pitocin before Arianna was born a little after 9pm by vacum, which was used because the Dr. told the nurse outside my door "She needs to have this baby, I need to go home". I had Grandmothers with me who were shocked at his statement. Within moments of taking my beautiful daughter in my arms, my happiness was transformed into dread I notice strange episodes, pointing it out to the Dr's, "Look she's turning purple what is wrong with her it looks like she is having a seizure!? "Oh no" says the discharging Pediatrician, "She is just choking on her saliva, she is fine." Since I am the oldest of 5 children I am pretty familiar with babies and I knew what was happening was not normal.
Arianna was home for nine days and her seizures continued. I couldn't get anyone to listen at the one-day follow up, because they "didn't witness” the episodes. At the one-week check-up, clinic doctors finally "witnessed the episode." Only then did they examine and analyze the video recordings and seizure activity log I provided. After five hours of deliberation, the three doctors concurred with me, called an ambulance, and had Arianna taken to the NICU in Vacaville. Apparently a Pulse Ox Monitor helps detect seizures, yet the discharging pediatrician at the hospital didn't utilize it.
Arianna spent three weeks in the PICU. During her stay, I encountered the original discharging pediatrician and I made sure to let her know how unprofessional she was for not utilizing a Pulse Ox to at LEAST prove me (the "new, inexperienced mother”) WRONG.
Upon discharge, Arianna was diagnosed with seizure disorder and reflux. I questioned the second diagnosis since she never spit up, burped or vomited – common reflux symptoms.
After extensive testing and bloodwork, no signs of a genetic disorder or disease were found. Arianna was a happy little girl and delighted in recognizing a familiar face. When she didn't respond familiarly, I thought she was trying to establish who she was looking at since she was cross-eyed. I struggled with transporting her. Strapped into her car seat, she would scream and cry all the way to our destination. She ate baby food alone and mixed with cereal, drank juice and formula from a bottle. But sometimes she would scream and cry, have very high fevers and become dehydrated. Then I would have to take her to the emergency room because I couldn't reduce the fevers. ER staff had trouble drawing blood and starting IVs. The blood test only showed elevated white blood cells, and Ari would be discharged once her fever went down with the rectal Tylenol and Advil alternation.For the better part of a year, no one could determine the cause of the spiking fevers. One night, before an appointment, Ari writhed and screamed in pain. I tried to calm her, gave her Tylenol, brought her into bed with me, rubbed her back, sang to her. Nothing worked. After three quarters of the night I became impatient, and my best friend’s mother, Donna, asked if she could take her so I could get some rest. Arianna continued to whine but stopped screaming. Later that morning, Donna told me to ask for a gastrointerologist referral. It seemed like something was hurting and since this wasn't the first time it happened, Arianna should be seen. I was grateful to have Donna by my side because the doctor asked so many questions. After I explained what was happening, he would then ask what I had done to resolve Arianna's issue – information that I included in my initial statement. Then he asked if I thought a gastrointerologist would really help and why? I soon learned to ask for all referrals from the Primary Care Physician. This doctor was only a geneticist. I never realized how many times I would have to ask and in some cases demand care and treatment for my child. During this exhausting time, I also sought a moment to myself. The local regional center told me I could have a few hours of respite. At this time Arianna wasn't considered medically fragile and didn't require a nurse, so the regional center provided a person who was supposed to be well suited to provide a parent with a few hours of respite. Maybe five hours was too long. I provided the caregiver step-by-step instructions and showed her exactly what and what not to do. I gave her a contact number so she could reach me in case of emergency. Before I left, I explained that if Arianna cries a lot and can’t be calmed, bouncing her on the yoga ball was her favorite activity. But I said to be sure NOT to feed her or give her liquids while on the yoga ball. About three hours later, Donna called me to come home. She said Arianna had screamed for the past 45 minutes, and the respite provider couldn't calm her down. When I returned, I found that the caregiver said she was feeding Arianna while seated on the yoga ball. When I asked her why she did that when I had specifically said not to, and the caregiver replied, “I thought it was okay.” I told the regional center what happened. At that time, Arianna was bottle feeding with a formula thickened with cereal, baby food and juices. For her last feed that evening,she would not take her baby food with juice although I tried for an hour. She only drank formula after that; she had acquired an oral aversion. After that, she also refused to drink water for hydration. I didn't get respite again for three years.
Once Arianna began seeing the gastrointerologist, her distended stomach and chronic constipation became a concern. As I mentioned before, I could never get her to burp regularly after a feed or liquids. Within a month we were sent to UCD Sacramento for a week where they performed a series of tests including a barium swallow study and gastric emptying scan with a radioactive isotope. I stayed in the wonderful Ronald McDonald house near the hospital. After approximately two months we received the results. I had not really been prepared for what needed to be done to correct the issues.
Due to a pyloric stenosis, Arianna was found to empty only 5% of her stomach contents so her stomach was always full. They said she also had reflux with a poor swallow that puts her at risk for aspiration. She needed to have surgery: a pyloromyotomy, nissin feeding tube (at the time for hydration) and a fundoplication. I was not willing to have the fundoplication performed because of the complications and because she NEVER burped, lost weight, or had projectile vomiting. The surgeon said, "Well, we do all or none. I'm not willing to have to go back and do it later." I despised him because of his ultimatum, and I didn’t realize I could get a second opinion. I really wanted to say, “I'm not willing to live with your mistakes or bad judgment. If your stomach were FULL 24/7, wouldn't you have reflux too? She never burps or projectile vomits, and I don't want to have the fundoplication done."
Three years later, after numerous endoscopies and sedations because of the fundoplication complications, I went back to the office to tell the doctor how I felt about his ultimatum. I found out two interesting things: (1) Fundoplications are no longer performed except in extreme cases, and (2) That doctor no longer practices there.
Preschool was nice because the location was in the town where I lived and the staff were kind and helpful.
Initially I was diagnosed with reflux, but an array of tests showed that I only digested 5% of my meals. I was about 2 1/2 years old when I had my first major surgery.
Arianna’s first three months were excruciating and her first two years were daunting; nevertheless, she is happy with us in her world. Even though I did everything I could, based on my knowledge and the medical advice I received, I often feel like I should have done more -- that somehow I should have known more. But Ari’s smile says otherwise.
When Arianna was almost six, she screamed and cried constantly. Incidentally, we had just started her on the Ketogenic diet which is intended to alleviate seizure activity and minimize the need for medication. This high protein diet -- involving precise measuring, mixing, checking urine ph levels, and logging information -- should not have contributed to her condition. Initially she wasn't comfortable lying down after feeds, which occurred every 2-1/2 hours. I accommodated her by placing her on her side, but that changed after a month and a half. I was taking her to her primary care physician frequently, and the doctor ordered test after test. I would take Arianna home and keep her from school and respite care. I tried to help her sleep, but by this time lying down made her scream and whine constantly. After three months she began to doze while sitting hunched over and cross-legged. Every night I went into her room to aid her positioning so that we could both have some rest. That was usually good for about an hour or so. Frequent doctor visits and multiple labs with the absence of proper sleep began to take their toll.
By the fifth month, I was too sleep deprived to take any more. I returned to the primary care physician for more tests. All we discovered were elevated white cell counts. Her doctor questioned her hydration and bowel movements which were few and far between. Her doctor said that if she isn't better by tomorrow, admit her into the hospital. Arianna’s color had changed and she wasn’t looking hydrated. The next day at about 10 AM, I took her to Sutter Memorial. Within 24 hours she was in emergency surgery.
She progressively looked worse. With their close monitoring, they decided the problem had to be intestinal: lack of absorption of nutrients. They discovered she had excessive adhesions -- sinew-like scar tissue from her first surgery that was intertwined throughout her intestines and had been cutting off her digestion. Her surgeon informed me that it was a good thing her intestines didn't get so restricted that they died because they would have had to remove all the dead intestine and reconnect the remainder, which would have been a much more involved procedure.
Arianna had an amazing surgeon. I asked her why Arianna would have so much scar tissue within a matter of almost four years? She said, "It just happens to some people" and added that it could very well happen again. I guess I know what to look for next time and I dread it.
I screamed and cried for five months. I saw doctor after doctor and had lab test after painful lab test, yet no one could figure out what was wrong. I couldn't attend school and I only slept for a few hours at a time.
Traveling with me was easier when I was little because I could easily be lifted into the car. By the time I was 9 years old, I could no longer fit into my car seat.
When Arianna was little we took her out to eat with us, see movies, shopping, the mountains, the State Fair – once we went to Maui and Ari experienced the feel of sand on her toes and sea salt on her skin. We even went to Guadalajara to meet my grandmother (Arianna’s great grandmother) for the first and probably last time. It was only a three-day trip and very hectic
Until I was pushing Ari in Mexico, I had no idea how much I appreciate the sloped edge of the California’s curbs. In general, moving around here is a piece of CAKE compared to down there. Many places are like that though. Even the small California towns where I grew up were not easily accessible. Some didn’t even have sidewalks.
When Ari grew too large to carry, I became concerned that we wouldn’t be able to include her in as many activities. We had done many of these things during the good financial times. My husband is a construction superintendent/project manager, and we had a very difficult four years after the housing bubble collapsed. Once I even tried to get food stamps, but since Arianna receives formula and diapers from the State, our income was counted for a family of four rather than five. It seems some expenses just don’t count such as buying and washing Arianna’s clothes, cutting her hair, getting babywipes, or obtaining transportation to her many medical appointments. In many cases, the appointments are essential for Ari to continue to receive services. All we needed were some FOOD stamps, not AFDC or the like. So as Arianna grew, we had to accommodate her. When she outgrew her carseat, I created a thickly padded and very wide belt with Velcro at each end and strapped her in, and then put the car seatbelt over it. It worked great!
At age three, all of Arianna's services changed from The Regional Center to the school district, which didn't sit well with me. I had married a wonderful man who loves Arianna like his own and together we have two active boys. I moved from Solano County where Arianna received physical therapy three times a week, occupational therapy twice a week, and speech once a week. In addition, transportation was provided. I wasn’t given any information on how to obtain similar services at our new home in Yolo County. In an attempt to acquire physical, occupational and speech therapy, I found it wasn't enough that I ask and inquire and ask again. After about a year, I had to make sure it was in her IEP that "Parent requests that Arianna receive P.T., O.T, and speech evaluations so that Arianna may access FAPE." RESEARCH is imperative. The 60-day timeline had been exhausted and the evaluations still had not been performed. I had to file a complaint with the California Board of Education; within two weeks the evaluations were completed. After the assessments were made, it was noted in the evaluations that Arianna should receive 30 minutes of O.T. a week and 60 minutes of P.T. a week. During an IEP, the Special Ed Director stated, "Since P.T and O.T. are essentially the same, then how about we just do O.T.? Thinking I had my wits about me I said, "No, I don't agree. I would prefer Arianna receive the P.T. since more time was given.”
Once again, research is key. If I had known better what was trying to be done, I would have said "No, I do not agree. If the evaluations clearly state a recommended time, then Arianna should receive the therapies for the time recommended."