9yr old son ivig 2wks ago, count up now down

Hello, my 9yr old son was hospitalized 2 1/2 weeks ago for a platelet count of 5,000 he had ivig and we wer released after 2 days there. His counts went from 17,000 on day of hospital release to 59,000 3days later then 89,000 the next week and then 189,000 last week, now yesterday wer down to 143,000....was so hapy he was improving, now I'm back to worried sick that the treatment is failing!!....any information or words of wisdom would be appreciated....he is my only child and my angel, I'm terribly worried!!

Hi Laura,

Try not to worry too much, there is a lot of natural variation in platelet counts, and your son's count is still good. Even if it goes right down again, you will cope and so will he. Kids manage remarkably well with very low counts most of the time (my son goes through life quite happily with a count below 15) and the chance of bad events like brain haemorrages is really small (way less than 1%). I know its difficult not to stress yourself out, but most kids recover from ITP quite quickly and don't suffer any problems.

Ali

Ali , thank you for your response and words of encouragement, its may b a long journey to recovery and I appreciate all the advice I can get as I'm new at this whole itp thing! ....I will keep your little one in my prayers as well, thanks again

Laura:

I'm sorry to hear that your son was diagnosed with ITP. The treatment did work; it's usually just a temporary one to get low counts up pretty quick. Hopefully it will last a while. If not, there are other treatment options to discuss.

Our experience with IVIG has been like this...

High numbers the first two weeks, then the third week down into the 30's (although this time it was 50) and then by 4 weeks after the treatment, back down below 20. We've had 5 treatments since Jan 2012. It is definitely a roller coaster, and not a fun one

Good luck!

Hi Laura,
Try not to stress too much. You never know, your son may only have ITP that is acute and will go away within a few months like our daughters' did. Her platelets dropped down to 2k and the haematologist took the wait and see approach so she was not given any medication.

Hope his platelets stay up

Le'at

Hi Laura
My daughter Brianna has had itp for a while now. We have only done treatment once when her counts were down to 2000. She is 10 and her counts have been under 20000 for the last 4 or 5 months. Our Doctors like to use the wait and see method. She gets really sick with ivig drug. She is very active so the itp hasn`t slowed her down any. Hope this helps a little.

Hello Laura ... I am going through a similar situation. My 6 year old daughter had a platelet count of 3,000 a month ago so she was admitted and given ivig. Two weeks ago her platelets were 564,000. Yesterday I took her to the doctor an her platelets are down to 130,000. I'm worried sick that they will continue to drop. She had horrible side effects with the ivig . We will be testing her again in two weeks to see where she is at. I'm constantly searching for bruises. I don't ever want to see her go through an ivig treatment. It was hell.. I hope your son is doing better. Please keep us posted.

first i just wana thank evryone that has replied to my post!! the support means so much to me!! brandi, dawn and lea i hope all is well with your little ones! bell, i just recieved your post today and im getting ready for a hematology appointment in about a half hour, jayrids blood count was 108,000 as of yesterday which is down from 143,000 that it was last week. i can say i was expecting it to be worse so im praying his body is slowing down the distruction of his platelets. but the thought is still there that what if its worse next week!He is such a healthy happy little boy other than this....i just hate it! like u im constantly looking for bruises and telling him to calm cown and be careful! i know hes tired of hearing that but i cant help it, im a worry wart neways and this has just put me in stress mode! we had no trouble with the ivig but he keeps saying he doesnt wana go back to the hospital cause all the iv's and needles hurt! they blew out a few veins and hes scared to go again... which i dont blame him!...well im off to the bleeding disorders clinic so il be in touch! please feel free to write me back with nething or just to vent! hope your daughter is doing well!! stay positive! God bless!!

Well, hematology appointment was as expected, realy no new awnsers...wait and see. Could be acute could be cronic, no way to tell! Ivig worked but #'s are falling...wer 4weeks out and I'm not looking forward to Monday, or should I say I'm nervous and a little scared what his count will be! I kno wel pull through this no matter the # but I just want him to be well so badly!! On the outside he's perfect...keeps sayn "mom I feel fine" but unfortunately that was true of the night we wer admited to the hospital, he doesn't understand why he feels so good but yet is "sick" on the inside! The dr's at the hospital didn't hide anything from him so he knows what's going on...sumtimes I wonderd if we shouldnt go in the hall and talk but I decided its best to be upfront with him about his condition, he is 9 and sensative and sweet as can be but has dealt with this betr than I hav I think sumtimes....he's been so brave! I'm so proud of him and love him so much!!

Laura - my 4 yr old son had a hard time understanding what all the fuss is since he feels fine as well! I hate to say it but over time, it will be easier on you. I mean, of course you will always wish for normal counts and for it to go away, but you will also see that life can be close to normal even with ITP.

When my son was dx in January of this year, it was exactly one week after I had a c-section with my third child. If you would have told me on that day that at some point I wouldn't freak out and cry every time his levels dropped, I would have thought you were crazy!

Sounds like you have a very brave young man!