Posted in Tirzah hsp missions

Kristy from Passion for purple asked me if there was a place that I had written all about Tirzah and what she has been dealing with for the past two years. I discovered except for a few blurs here and there about dr appts, there wasn't a lot of information.

So it all began jus before Christmas 2005 when Tirzah was nine years old.  Her younger sister Kezziah told her mommie that Tirzah was crying herself to sleep at night and scratching her legs. When Heatherly finally got a look at Tirzah's legs, she had a horrid rash and bruises everywhere. We thought the normal things, allergic reaction, change in detergent etc. When Tirzah wore a dress to church, a couple of the nurses at church told Heatherly she needed to get Tirzah to a doctor right away ( she already had an appointment but you know how some people can be). Others thought she had been beaten.

The doctor knew exactly what tests to order and the first panel was to test for Leukemia the second was to test for HSP. It proved to be the later. This rash and bruising had followed a bout with the flu. Doctors really do not know the causes for this disease; they range from bee stings to the flu. They also do not have a cure. In most cases, it happens between 2 and 10 years of age and basically what is happening is after being sick, her immune system continues to attack the healthy cells in her body.  In most cases, after one time it goes away never to return.

For two months, Tirzah had to stay stationary, a near impossibility. Any activity caused the bruising to return and the joint swelling arthritis pain was almost unbearable. Her knees would buckle just walking to the bathroom. Finally it went away and we were hopeful. A couple months later it returned without the bruising but with inflamed joints, vomiting and extreme pain in her abdomen. Further testing says it is HSP again. This time involving internal organs. Still no treatment available, just advil/motrin/Tylenol for pain.

Finally we are sent to UC Davis Children's hospital to the nephrologists. She is an amazing doctor, confirms all that we know and schedules a few tests to see how much kidney involvement there is. The Dr said that the HSP is attacking her joints, her kidney and her bowels/GI tract which is typical HSP. So far it has not damaged them, they are inflamed and they will check them again in three months. Pretty much this means it has to run its course and there is no treatment. If the damage increases in the next three months, when she returns, they will do a renal biopsy. There is no medication they can give her to stop this when she hurts she can have Tylenol. The blood test is to check for another type of microbe that mimics HSP just to be sure and three others known to cause renal failure. Monitoring her blood pressure is key so we must begin doing that. Tirzah now 10 years old really likes her. Of course that means because she is so talented and super amazing, she is hired on at the CDC in Atlanta. But before she leaves she starts Tirzah on Omega three fish oil pills and aloe vera juice. Heatherly is the one that discovers this possibility.

 Whole new doctor, whole new battery of tests.

Tirzah's new attacks, always following a cold or flu type thing now includes blood in her urine,. Today This is not just a little blood, this is a lot of blood. The look this week was that of cranberry juice! They once again rule out Leukemia, Lupus, Childhood RA, Lyme's Disease and a million other things I have never heard of. Tirzah has HSP.

So we continue the fish oil and aloe vera. We add cranberry juice as a regular daily addition. They do not want to give her meds because they can do more harm. If her flair ups become a constant, than that will change. Last appointment they discussed how they do not want to use chemotherapy. There are trials using it, but they have not been promising. We had not even been told this was something they were even considering. Her pediatric PA asked at that last visit if they had placed her on a transplant list yet...... no, they have not. Her rheumatologist says all her arthritis is HSP related. She sent her to an ophthalmologist, because the same way the vasculitist attacks her body, it can damage her eyes. Her eyes were very, very good! Praise the Lord something is!

Yesterday they took more blood, did more cultures and sent us home again to increases of Omega 3 this week.....

This truly is something we can only place in the Lord's hands (which keeps us from trying to figure it out on our own  ) It has been 2 almost 2 1/2 years now. The outbreaks still come with colds etc (which is why it is important to keep sick kids home from church, it may be just a cold to you, but not to others).

Trust in the LORD with all Your heart, and lean not on your own understanding (this is good cuz there really is no understanding to even consider leaning on), In all your ways acknowledge HIM (Tirzah wore her Jesus Chick T-shirt to UCD yesterday and shared her love for Jesus even with her doctor) and He will direct your path (even if it is from doctor to doctor, test to test, Trust to trust) Proverbs 3:5.6 (personalized not paraphrased :)

Thanks for asking. Now I have a place to reference too.