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TOPIC: back down to 22

back down to 22 9 years 8 months ago #11398

  • menminime
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so her numbers are continueing to drop once again. Monday it was at 38 and today it was at 22. So now her Hemo doc called and wants her to go in and get the IVIG treatment. Again... there has got to be another way to do this each time my ped sends me to the er. I just don't know.

From what I thought when you have ITP you go up and down on your numbers. She is only up 2-3 days after IVIG. THen then rapidly decline. So much so that she has to go twice a week to get checked. She is too little for this she is only 17 months. Anyways her ped just called and yes she will be going in tonight

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Re: back down to 22 9 years 8 months ago #11404

  • patti
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That seems rather aggressive to me. 22 is not that low and people frequently do no treatment at that. Our son sat with zero platelets for months and we did nothing but gave him stuff to keep him healthy (no meds) before we settled on a treatment for him. I think I would encourage you to get another opinion or have a frank talk with this hemo.


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Re: back down to 22 9 years 8 months ago #11406

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I think I'd consider a second opinion. It might be time to consider other treatment methods. IVIG seems too invasive for the short term result.

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Re: back down to 22 9 years 8 months ago #11418

  • Rhiannon
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Not been keeping up so only just joined in. How long has this been happening? When I was first diagnosed with ITP 1994 I was in hospital for 6 weeks and as far as I can guess they tried things. In that time they said Splenectomy being a niave 25 year old said okay. There wasn't anything around in those days at all to ask a second opinion but me being institutionalised per se (born with hole-in-heart/surgery) would have just said yes probably anyway. I don't know how old she is, whom you are talking about.

I have had splenectomy and do get periodic episodes of ITP from time to time but compared to 1994 where from what they say - nothing worked is okay.

I have had meningitis and septicemia in turn through lack of spleen but also through lack of information about it all.

Hope you get a second opinion or persuade them to look at other options. I am usually okay with prednisolone and IVIG since splenectomy. This time I have only had prednisolone and now tapering which causing me a few previous symptoms of meningitis but only symptoms of the old illness --- I HOPE?

anyway I hope you feel happier about what is happening soon.

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Re: back down to 22 9 years 8 months ago #11445

  • juliannesmom
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Is she seeing a pediatric hematologist? Are you near enough to one to do that? They are the ITP experts, and I'd consult one ASAP. As difficult as the IVIG side effects were on my child, its treatment value was great, and its good effects were long lasting. She had IVIG in January, March, and November of her first year with ITP, and has not needed it since. She was admitted the first time because it was the first time, and it wasn't known how she would handle IVIG. She was admitted the next time because the side effects of IVIG were so hard on her. She was admitted the third time because it was during a bleeding emergency. Some folks here can take IVIG in infusion centers, because they don't have bad side effects. With your daughter's age, I don't know if that's possible. I doubt our docs would have used IVIG again (except in bleeding episodes) if all she got was two or three days of safe counts. There are other less invasive (but still with side effects) treatments out there. Go see the experts. A good place to start is a teaching hospital/medical college, which usually has all the specialties. We lost faith in our ped when she didn't take the initial diagnosis very seriously, and just planned to consult a hematologist by telephone from time to time. A doctor friend got us in with a ped hematology group, and they have really been my child's primary docs ever since. We've been blessed to be in the good hands of docs with reasonable mindsets.

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Re: back down to 22 9 years 7 months ago #11596

  • Angelalogin
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Hi there, Im still not very knowledgeable when it comes to the ITP we've been dealing with it since August last year...but my son who's 10 kept going down to 2's and 3's and they would treat with IVIG then, but not if it was above 10. The IVIG had no side effects, BUT it didn't work. He would drop drastically after treatment, initially the numbers came up, but then the more we used it the less it worked so we just ditched the idea all together. He went the route of high dose oral pred., some side effects but it was all that worked. Now on 15mg/day as opposed to 150mg/day, and his numbers seem to be holding between 30 and 100. Being on the pred and cellcept he has been sick now with this super bug going around and now has full blown pneumonia but even with him being sick AND on antibiotics, he still maintains numbers above 30. For now.... Hopefully when the pred is gone all together then they will still stay there but who knows. If your daughter keeps dropping right after treatment than its obviously not working. There are other treatment options and like everyone on here told me, although all seems lost and nothing is working, usually there is one treatment that will work for your child. We went through many, many options and we're still not out. Anyways chin up, do some research and ask lots of questions its the only way to deal with this roller coaster!!!!!
May your daughters numbers return to normal soon!

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Re: back down to 22 9 years 7 months ago #11604

  • SamsMom
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I'd have to agree with Patti. We treated my then 3.5 year old at 24 and the last time she was to be treated, we said NO as she was at 22. We said we would wait till she dropped below 10. Not only did she not drop, she stayed in 20s for 2 months of weekly tests and moved to 30s, then 40s , and all the way to 70-80s. She is doing a number and is currently at 70 after going p till 146, but with such a small baby if you can, u could wait till it at least hits pre-teens

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