Autoimmune Low-Blood-Platelet Disorder
A Mother’s Perspective
In early 2013, we noticed our two year old, Azaria, had a lot of bruises on her legs and arms. She also had bruising on her spine and had a black bruise on her cheek, which she didn’t remember getting. She was tired and falling over a lot. We took her to the doctor and asked for a complete blood count. Her platelets were very low at 19,000 per ml.
That was the start of her journey through the hospital system, including many blood tests (up to four times per week initially), x-rays, CT scans, emergency trips in an ambulance and a bone marrow biopsy until finally she was diagnosed with Immune Thrombocytopenia.
What Caused This?
ITP is not genetic and not contagious; it is likely that a virus caused her disorder (although we cannot know the cause for certain). ITP occurs when, due to a defect in the immune system, antibodies attach to platelets because parts of the platelets look like a virus or bacteria the body is fighting1. Where ITP occurs in children, 50% recover in 3-4 weeks, 75% in 6 months and 90% within 12 months. Chronic ITP is arbitrarily defined as thrombocytopenia that persists for 6 months or more2. Azaria’s ITP is considered chronic, as it is over 18 months since the diagnosis, and may continue into adulthood. Azaria’s blood platelets fluctuate but are often under 20,000 per ml of blood.
Sleep / Fatigue
Azaria gets tired and fatigued and sometimes falls asleep at the dinner table with her head in her food. She has had light sensitivity and pain all over her body for over 18 months, and – when the symptoms are at their worst – even stroking her hair hurts her. We don’t know if the pain in her body and light sensitivity is caused by ITP or not, so doctors are continuing to do tests to see if they can find the cause of her pain. Sometimes Azaria has a sore mouth and doesn’t want to eat or drink; she also says she’s too tired to eat and says eating makes her tired. She also has issues with her bowel. Although she doesn’t always look sick, it doesn’t mean she isn’t.
We want to go to the Platelet Disorder Support Association conference in LA to meet with medical specialists and others with ITP to learn as much as possible to help Azaria to be well. There is still a lot unknown about platelet disorders and we want to know whether or not the pain in her body is related to low platelets or is a symptom of something else. At the conference we will also set up a New Zealand support group for platelet disorders, which we will start on our return. I have set up a Facebook group, ITP New Zealand3.
We have moved Azaria into home-based childcare to reduce the risk of her falling and hitting her head. If Azaria has a fall that causes internal bleeding there is a chance that the bleeding will not stop. We also have to watch her for signs of spontaneous bleeding, and then take her to hospital.
One trip to hospital earlier this year was because Azaria decided to climb onto a top bunk, even though there was no ladder to climb. She fell and hit her head and stomach on the way down, so she had head and stomach x-rays and scans. She was in hospital for 30 hours and was transferred between three hospitals because of a possible bleed behind her eyes. We try to avoid situations that put Azaria at risk of hitting her head but we still want her to be able to be a kid and play.
We avoid bouncy castles and trampolines if other kids are on them. Another reason for choosing home-based childcare is to lessen her exposure to illnesses that can drop her platelet levels. It is when Azaria’s immune system is working hard to fight legitimate infections that her platelet levels drop the most.
Our Support Network
We also have identical twin girls, Eden and Samara, that had just turned one when Azaria was diagnosed with ITP. One of our challenges during medical appointments or emergency hospitalisation has been caring for our twins.
We are thankful for our parents who have travelled to look after our children, our friends, Life Church4, Homebuilders5, and Little & Local Coffee Kitchen6 who have supported us. Although the New Zealand health care system is imperfect, we are thankful to have the medical services we have been provided with. We are also grateful to the doctors and nurses at Starship Children’s Hospital and North Shore Hospital and the St John’s Ambulance7 officers whom provide such a valuable service. The Platelet Disorder Support Association from the United States has given us a lot of invaluable information8.
Wendy Grace Allen
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