So basically with ITP, your immune system makes a mistake. It goes to attack a certain virus in your body, but it attaches an anti-body to your perfectly healthy platelet. So now your spleen and immune system as a whole are attacking themselves, destroying your platelets. Without platelets, you cannot clot. When your platelets get too low, your body starts to spontaneously bleed (through the skin, nose, gums, sometimes internally and worse case, into your brain).
With Chronic ITP, your body never figures out that it's doing this and anytime you contract a virus, your immune system starts to attack your blood. It's a scary thing with young children who are always running, climbing, and tumbling on their heads since just one good blow to the stomach or head could result in internal bleeding and death.
However, the "treatments" for ITP aren't all that great either. Most of them leave your immune system suppressed and often have horrible side effects.
Normal platelet levels should be between 150,000 - 350,000.
In Ahavah's case, her "normal" range with Chronic ITP is almost always between 40,000 - 70,000.
We would rather not have her on a daily medication for the remainder of her life when she usually has platelet levels that are just above being "too dangerous" (40,000). This is also recommended by her primary and her hematologist.
There poses great risks with contracting a virus, however. I mentioned this in my last post briefly. Normal children get the influenza and it's no big deal, but when a child with this Autoimmune Disease/ Bleeding Disorder it poses a whole new risk to being sick. When she contracts a virus her immune system starts attacking her platelets. Now they are well below the "dangerous range" (usually between 4,000 and 20,000 when she's sick).
Not only does she battle the fevers, congestion, and possibly vomiting or diarrhea, but...
What if she coughs too hard and she starts to bleed?
What if she vomits and starts to bleed from her sore esophagus?
What if her loose stool is smeared with blood?
How much bleeding under the skin is too much to be worried about (petechia)?
These are all very serious and dangerous situations that people often don't understand when they think about children with this disorder. When she gets sick, we have to run her blood every other day to make sure her levels don't drop too low. We have to keep her nose lubricated, her butt on the couch, and a humidifier running constantly to try to avoid any bleeding from anywhere. We have to check all her bodily fluids from urine and stool to phlegm, and runny noses for any sign of internal bleeding. Usually upon the onset of a virus, I am instructed to watch her closely for any symptoms of bleeding into the brain. Theses are the nights that I remember all we've walked through with this disorder, and unfortunately, once or twice a year we have nights like these.
There are things we've just learned to adapt to and ways we prepare for the inevitable.
You often forget you have a child with an extremely rare form of an extremely rare disease (and praise the Lord for that because that means that she's not always dealing with bleeding anymore).
(1) We stay as far away from drugs as possible: Anything that can hinder her immune system, or even over stimulate her immune system is not good. Anything that could thin her blood or decrease the good bacteria she has in her gut is also not good. There are so many things could cause her platelet levels to drop further then they are from simply the virus. We try to only do Tylenol when a fever is high. Otherwise...
(2) We rely a lot on herbs (approved by her hematologist), essential oils, and vitamins/supplements: There are so many "good" remedies that a child with ITP cannot have because they affect her platelets or her ability to clot. We make out own cough syrups, cleaning supplies, herbal tinctures, vicks vapor rubs ect. She's continually on a good multi-vitamin, a vitamin D (NOT FISH OIL!), and a vitamin C when I can afford it. All these things i have found make her lows a little higher then they would be without them. They also keep her from contracting illnesses as often.
(3) We ask for prayer when a virus comes along: I have NO issues asking people to pray for Ahavah's levels. I believe that's why we haven't ended up hospitalized over this v.e.r.y. l.o.n.g. weekend. She only had minor gum bleeding and bleeding through her skin, but nothing that was full blown and wouldn't clot.
(4) We track levels, symptoms, and know exactly what to watch for: I was able to speak about this at an ITP conference I was invited to speak at last year. Because we've tracked how she feels, when she's low, and what she looks like, I have a pretty good gadge on when her platelets are too low and we take her in. I know when she's under 40,000 platelets, she starts bleeding under her skin in her neck, chest, and thighs. When she's under 20,000 she starts bleeding through her skin on her face and gums. And of course if she bleeds for 3 + hours from her nose, she probably needs to be hospitalized, however if her bleeds only an hour, we can probably get away with waiting until we can see her doctor. When she's tired, has a headache, looks pale with dark circles around her eyes, has bruises on her shins and arms, these are all things I notice and can keep an eye on to gauge where she's at without getting blood tested.
(5) We carry a "medicine bag" and she wears a medical bracelet: Her hematologist gave us the bag and filled it with all sorts of supplies as well as paid for her medical bracelet every year. We carry nasal sprays, clamps, gels, oils, nose packing, q-tips, Tylenol, and often other emergency things on bad weeks. I will usually drop her off at her Sunday School class with this bag and explain to teachers how to use what's in the bag and when to come get me. Her bracelet is in case she bleeds and goes unconscious or bangs her head or is in a car accident medical assistance can know immediately that she is in severe danger of internal bleeding.
(6) We check levels before any major events (trips, air plane rides, dental work, surgeries ect.)
I am so blessed to be able to reach the community of cancer patients and staff as well as bleeding disorder patients and staff over the last few years.
It's strange when everyone in a well-renown hospital is familiar with your daughter's case and they all study it.
It's also strange to be one of the very few that are able and asked to give advice and counsel to other struggling parents and children and have such an open door in sharing the gospel with people.
Never once have we gotten discouraged in our walks with the Lord due to this disorder.
Never once have we questioned His goodness.
Too many times over the past two years have we been told "we could lose her this time", but that peace that comes only from Jesus floods our hearts.
We love trials, because of what they produce in us!
We don't ask the Lord for bad things to happen, but we embrace them with joy knowing that Jesus is going to make us identify with Him more!
We had a scare with Alecia yesterday when she started to break out in the blood rash Ahavah gets. Doctors ran tests and don't see anything worrisome or pointing toward the assumption that she's developed what Ahavah has. We're praying it goes away with time and praising the Lord for that great news!
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