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Azithromycin helping ITP

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10 years 6 months ago #39111 by lana10123
Azithromycin helping ITP was created by lana10123
Hello everyone. i just recently found this site and i have found a wealth of knowledge in it. So thank you all that post and answer questions!

My daughter Aleena was diagnosed with ITP in November. Her counts are usually under 20, but a few times have spiked to 24,45,and 140(while on azithromycin). She is seeing a pediatric hematologist, she is using the watch and wait approach. She had said we will treat when she is around 10,000-12,000. Aleenas options are IVIG or steroids because she is O-.

So, this Tuesday her counts were 12,000. We left the hospital before her results were out, so i got a call instead. Her Dr. prescribed a lose dose of the antibiotic azithromycin. Why? Because the last time she was on that for a skin infection her counts hit 140.

My questions are ... Is this a common thing? Should I want her to be treated with IVIG? or should I hold off and wait some more.

Its just all new to me. I feel like as a parent i know something is wrong with my baby, and i feel the need to fix her. I know that ivig has some bad side affects. but i just want her to be better.

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10 years 6 months ago - 10 years 6 months ago #39118 by juliannesmom
Replied by juliannesmom on topic Azithromycin helping ITP
If IVIG works well, it works temporarily, but can be a good rescue treatment in the event of a bleed or really dangerously low count. It has side effects, however, that are not to be discounted. My daughter's first IVIG treatment (for her first count under 20,000, but, nowadays, they might wait until lower) raised her counts quickly, and they stayed up for a while before gradually decreasing over the weeks after. Within 24 hours of discharge, however, she landed back in the hospital with "the worst headache of my life." (These are ER red flag words for head bleed.) She had migraines before, but this was much worse. It is aseptic meningitis, meaning an irritation of the brain membrane caused by something other than viral or bacterial infection. She was observed for 24 hours, had a head scan, and was treated symptomatically. She had been premedicated with benadryl and tylenol for the infusion, but that was not kept up during and after. We learned from folks here that the side effects may be lessened by good hydration throughout the infusion and after, benadryl and tylenol before and during the infusion, continuing the benadryl after the infusion for a day, and a decadron (solumedrol) shot at discharge or pills for a couple days. She had IVIG again for a count of 3,000, and the side effects were minimal with this approach. The third time she had IVIG was for a nonstop nosebleed when her counts plummeted after our first trial of decadron pulse therapy. (She tolerated the low count well, generally, but this time I think it was the fast drop that did it.) IVIG is also terribly expensive. Sticker price, before insurance discount and payment, was over $20,000 for one night in the hospital and IVIG. (Our docs do that inpatient, so the patient can be closely observed for infusion reaction.) And, although it is well screened and actually detergent cleaned, IVIG is made from the pooled plasma of many donors, so it is a blood product, and that is not without its risks. Many years ago, some patients contracted hepatitis C from IVIG, just as they could have from a blood transfusion, but screening is much better now. (Don't want to scare anyone off IVIG - it's a wonderful rescue, for which we were grateful. I know of no hepatitis or other issues since the early 1990s, but no such product can be 100% risk free.) Watch and wait is frustrating, to the patient and the mother, but, provided the count doesn't go dangerously low and there are no bleeds, it is a "treatment option" without side effects.

How old is Aleena? The younger the age, the more likely that she will be an acute case, and back to normal soon. There are tips on here to help manage at various ages. (Some folks put bike helmets on their toddlers.) There is a tab somewhere on the site about managing ITP and sports. My daughter was just under 13 when diagnosed. ITP can restrict sports and other activities like skating and bicycling, and it can also cause some misery with a certain issue in pubescent girls. We had our miserable weepy days, but mostly we managed fine with watch and wait. (And, regardless of what some docs say, kids with ITP can get really fatigued, sleep-disturbed, and grumpy.) Within about three years, she went into spontaneous remission. It happens, so take heart. She is now almost 20 years old, and quite healthy. She was able to resume sports and all her normal activities. Even with low counts, she could play mild tennis in middle school except when the counts were below 30.

You've already done the right thing, by using a pediatric hematologist. (Other docs seem to eager too "fix" it.) There are patients, moms, and spouses here that can help you greatly while you go through this. It really helped me. Good luck with this.
Norma
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10 years 6 months ago #39155 by lana10123
Replied by lana10123 on topic Azithromycin helping ITP
Thanks Norma. I really need something to hold on to, hope is enough. I don't want to put Aleena through any treatments before giving her body enough time to figure things out. So far her count has gone up to 14,000 which is some progress. Im thinking she has gone up some more, she seems a lot better with less bruises and some color in her face. I won't know for sure until Tuesday, but I'm hoping. I also know that the antibiotics aren't a treatment, but its better then the ivig. What should i consider dangerously low?

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10 years 6 months ago #39171 by juliannesmom
Replied by juliannesmom on topic Azithromycin helping ITP
You will need to work with her doc to figure out what is safe for her. It depends on how well she tolerates low counts, her activities, and her age. Older kids understand their limits better. Our docs treated with IVIG thr first time the count was under 20k, but later allowed counts in the teens as long as she was tolerating it okay. Her second treatment was for a count of 3k. On the other hand, the same kid who tolerated 13k well for weeks didn't tolerate a rapid dop fom 50k to 15k after a decadron pulse. That time, the nonstop nosebleed triggered treatment. It is very individual.

You might also ask her doc if it would be okay to give her extra vitamin C. It doesn't help the count, but can lessen bruising and nosebleeds, as it improves vessel integrity. My teen took it, and bruised much less, with some improvement in nosebleeds. It generally can't hurt, but too much can cause loose stools, which simply calls for lowering the dose, but I probably wouldn't use it for a very young child.

I learned you can find enough internet info to scare yourself about any disorder, but, on this site, you can get some practical tips. I hope she's soon back to normal. If that happens, please come back from time to time to reassure the new folks.
Norma
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10 years 5 months ago #39532 by ttlshiwwya3
Replied by ttlshiwwya3 on topic Azithromycin helping ITP
My son has had ITP for 3 years and weird thing is he has found relief on 2 occasions with DAPSONE, also and antibiotic. It kept him stable (around 100,000) for almost 9 months. Then he fell again so we took him off. He is currently back on it as my attempt to control things and it has made his last treatment of Win RO last almost double the time it usually lasts. The dr's always told me from he beginning they only treat if he has symptoms of active bleeding OR if very low. He is 24,000 as of this past Monday and so a treatment is right around the corner (probably 2 weeks)He gets treatments under 10,000. I suggested do win rho when needed as a temporary fix as I am not ready to take his spleen out. So far it's been every couple of months. We did IVIG originally, and again another time. He got much sicker with that than the whin ro and the win rho is a much shorter time span in the hospital, 2. hrs verses 8-10. We have done steroids. I did venture this summer with what I would call the ONLY actual cure for ITP, using RITUXIN. It was 4 weekly infusions and did nothing for him Very disappointing. I have reached out to a few homeopathic dr's but there isn't ever an exact thing they'd suggest and want $ up front.

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10 years 5 months ago #39565 by lana10123
Replied by lana10123 on topic Azithromycin helping ITP
Just an update to this post. The antibiotics didn't do the trick we were hoping for. At Aleenas next appt she went back down to 12. Her hemo suggested IVIG and we treated her that day. Next morning after treatment she was 40. A week later 180. This Tuesday she was 130. I think the only time we will treat her is when she hits 12. She is a very very active 3 year old and i feel safer knowing her counts are up there.

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