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Erica and others 9 years 8 months ago #31710

  • crystal lee
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Hey guys, yes I did contact a doctor, and his hematologist. His dr is on vacation he doesn't have to be seen until May. His symptoms are only bruises and petechiae. What I mean by worse and worse is he JUST went up to 70 than a week later 113 he has NEVER gone above 20s so Sunday there was petechaie on his back..by yesterday it seemed everytime I looked a new bruise was there. He was hanging out in high teens low 20s since around Oct and this is probably the worse he has looked since Dec. Being there is no wet bleeding, no blisters drs aren't concerned same thing we have dealt with for almost 2 yrs I was just loooking for ANY hope that they can crash and go back up when remission is happening.

I didn't stop treating my son by choice, they hematologist's felt it was the best choice because NOTHING worked, they felt there were way too many risk to continue pumping all this into him for no response.

I have been using homeopathy since June and I do believe it has helped his gut.

His Dr is fully aware of us trying it, I talked to her before we started and she said at this point can't hurt to try (if anything it isn't going ot hurt him) she has known every remedy and everytime he has gotten one..She has even noted it in his chart.

Erica, are you the one who went to a conference and they talked about treatment, TPO's and rituxan and the use of them especially in kids under 5? I am not sure who it was I been looking for that post. His dr's haven't budged, nothing new has been suggested and I don't like the idea of TRYING Rituxan or 6mp (lately Rituxan is being used more in kids and it does seem positive, but Bryan is so young)

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Erica and others 9 years 8 months ago #31713

  • eklein
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I'm not the one that posted about treating children. I'm not aware of the guidelines or practices around the ITP meds and children. Did you try the search function?

Thanks for the update, I'm glad he is doing ok and you are working with your doctors. Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Erica and others 9 years 8 months ago #31714

  • crystal lee
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I haven't totally lost my mind after all!! I typed in TPOs children this time and it came right up!! It WAS said at a conference in the UK that a dr rather trial TPOs on children than use Rituxan especially under 5!!

Sorry I am not sure why I thought maybe it was you who posted it

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Erica and others 9 years 8 months ago #31716

  • 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 wasn't really concerned with the platelet part of all of this. Many children have had very low counts, and I am an advocate of the watch and wait approach for many of the children. I become concerned when there seems to be other unrelated symptoms, such as severe vomiting, and parents are being told that it's okay. Sometimes it's not okay. Vomiting blood can be serious and no one can determine the seriousness of that except a medical facility.

I will not change my mind about this, and there is nothing anyone can say that will sway my opinion.
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