My story started in November 2003 when my daughter, Naomi, aged nine, started being sick and I just thought, ‘here we go, another bug in the air’, only this time the sickness was a lot worse in that she couldn’t even keep down a teaspoon of water. We visited several doctors during the week, as I knew this wasn’t a normal sickness bug. Naomi’s eyes were sunken (a friend of mine commented that she looked like a drug addict and I had to agree). Her stomach was just about touching her spine when she lay down. She was asleep all day and all night, that is when she wasn’t being sick. She couldn’t or didn’t want to talk, she didn’t like noise or light and, when asleep, her eyes would roll. Another symptom Naomi had was excess saliva. On each occasion when she has been ill she constantly spat in a bowl or bucket, as she said her mouth was too wet.
Finally I took her to another doctor, I had to carry her into the surgery; the doctor checked her over and said she simply had a bug. I broke down in tears and said, “I think she’s dying I haven’t seen her like this before”. He wanted me to take her home. I refused; I seriously thought she was going to die.
He then asked Naomi what she wanted to do and she asked to be made better and said she’d rather go to hospital than go home. He rang the Children’s Ward while we were still in his room and off we went to hospital. Several tests were done, but to no avail. She was put on a drip for two days and was then OK to go home. The doctors suspected gastroenteritis or depression as two weeks earlier Naomi’s great gran had died.
Four weeks later in Dec 2003 it all started again exactly the same as before. We visited the GP after three days and were again told it was a bug or gastroenteritis again. We went home. Twenty-four hours later I took Naomi to the on call doctor, we walked in and Naomi told him straight away, “I feel like I did last time, I need to go to hospital to get better”. The doctor examined her and took the history and told Naomi she should go to hospital to get better again. She was in over the weekend on drips and we were told possible gastroenteritis again.
In 2004 there was nothing. In 2005 we moved from Lancashire to Devon where our family all live. In October 2005 Naomi started being sick again – now aged 11- with exactly the same symptoms as before. This time she wasn’t too bad in herself and anti-sickness tablets got her through this two-week episode – thankfully this time not ending up in hospital.
It’s now February 2006 and once again we find ourselves in the same situation. On the third day of the sickness I rang the GP explaining what had happened since November 2003, but as there was a lot of bugs in our area, once again we were told that it was just a bug. Naomi was given ranitidine to try and settle her stomach. This made no difference to her whatsoever. Twenty-four hours later I rang the surgery again speaking to another doctor over the phone, only to be told the same thing again, but to stop the ranitidine. Twenty-four hours later I took her to another doctor, who examined her from head to toe, tested her blood sugars and urine and told me there was nothing specific, but she may have a slight urine infection and was given antibiotics. We were also given anti-sickness tablets for overnight, which of course she couldn’t keep down. The doctor said, “If she’s not better in twelve hours take her straight to the hospital” and of course in twelve hours we were at the hospital. Naomi didn’t have to wait in the waiting room; the staff at A and E put her in a side room on a bed. By this time she couldn’t walk, couldn’t keep her eyes open or even talk and her eyes kept rolling. I was scared. Before we knew it we were up on the ward and Naomi was put on a drip and scans, X-rays, barium meals, urine tests and blood tests were all under way.
That night Naomi had a burst of energy and, as we were in a room of our own, she wanted to use the bathroom. I went with her, but after using the toilet her eyes were staring straight ahead, she went as white as a ghost and went very quiet. I got her off the toilet to get her back to bed, where I was going to buzz the nurse, but before I could get out of the bathroom Naomi collapsed in front of me groaning and shaking. I hit the panic button and tried talking to her but she was white, she couldn’t hear me. She was staring straight ahead and then her head flopped forward on to her chest, I was shouting her name when the nurses came running in, I said, “She’s dead, you’re too late.”
She had in fact only fainted, but in those few minutes, that seemed like hours, I thought to myself how could I ring her dad and tell him she’s dead. The doctor had only just been in an hour ago and told me that she would be fine and now, in my head, she was dead and he must be wrong. I saw her funeral in front of my eyes and all this in only a few minutes. The nurses sorted Naomi out and then me and told me she was fine, even though Naomi didn’t have a clue about what had just happened. The doctor was buzzed and came straight away. This was at 12.15 at night and he did more blood tests.
Kidney failure was discussed at one point as Naomi had urea levels of 45. She was given saline, glucose and potassium drips and eventually stopped being sick two days before she was discharged; her sick days totalled 12 days.
After everything else was ruled out and nothing else showed up it was decided that Naomi was suffering from Cyclical Vomiting Syndrome, which has been described to us as a ‘migraine of the stomach’.
Naomi is back to normal now, the worst is not knowing when, or if, it will happen again, but now we have some sort of diagnosis. We have been given strict guidelines that any future sickness must not go longer than twenty-four hours. We do not need to go to the GP as we have a letter saying that she can be admitted to the ward and put on a drip before things get too bad.
At the moment we are waiting for more test results to find out if Naomi has any kidney damage due to this recent episode of vomiting. For now Naomi is enjoying Year 7 at High School and doing plenty of things. In May she will be doing her Grade 1 and also her bronze medal for gymnastics that she does on Saturdays.
The scary thing is that when we went for Naomi’s follow up appointment we were told that if she had been home another 24 hours she wouldn’t be here today. The only peace of mind that I have got is that she can go to hospital after twenty-four hours.