Bleeding after Intravenous Immunoglobulin

[kelb1975]

Hi all, can anyone give me an idea on this. My daughter of 4 was given the intravenous immunoglobulin after being admitted to hospital following a couple of nosebleeds. She was diagnosed with ITP at the end of July and I thought she was starting to get better as she hadnt had anymore bruises in the last couple of weeks and then had this bad bleed.

She had the IV on the Thursday and was discharged on Friday. She woke up on Saturday morning with a nosebleed that stopped quite quickly and then throughout the day had 3 more all that only lasted a minute or 2. Since Saturday she hasnt had any bleeding, bruises etc.

Is it normal for the bleeds to carry on a couple of days after the IV or should the IV have stopped this immediately?

Her count was 4 and she'll be going back Thursday for more bloods

[sailor]

Hi Kelb1975. The IV will have raised the platelet count during the infusion to a level that would stop the bleeding which I assume is what has happened. However, I am not a medic but logic suggests the nose will initially have been weakened during the bleeding and further bleeding may occure until the nose has repaired itself. I do not think anyone could be catagoric and say it will stop the bleeding and prevent any further minor bleeds in the following days. I also understand Summer has not suffered any more so hopefully this is what will have happened. Let us hope her Itp will correct as it does in many young ones and this is an isolated incident.If you have any doubts, call your hospital.

From a personal point, I have had ITP for best part of 20 years with an average count of 10 over the last 10 years. I had one bad nose bleed that lasted 16 hours and had 5 days of IVg and 1 bag of platelets. I now have no medication (thank goodness) and attend for annual blood checks unless I have needed surgery. I still bruise, feel fatigued but life could be a lot worse.

I see you live in Bushey or that part of London. Which Hospital do you attend?

Good luck with the count on Thursday and keep us informed.

[kelb1975]

Thank you sailor, I think you are probably right. She missed her first day at a new school last week but fortunatly this doesn't seem to have stopped her settling in. The effects of the IV have been great and even though may be short lived its fantastic to see her like her old self for a bit.

Amazingly whilst we were in the hospital another little girl the same age was admitted and diagnosed with ITP.

We are under Kingston at the moment. This may change to st georges after 6 months if necessary. I can't fault Kingston at the moment as they were great last week.

She's a tough little cookie and her only issue she's had through all of this has been needles.

Thanks for your reply and take care x

[MaineMom3]

Hello. My four year old has ITP. He had an IV treatment when his counts hit 8. It took approximately 48 hours for his counts to get to 20. The way I understand ITP, different people respond differently to their platelet counts. For my son, he still has bruising and petechiae rashes until his counts go over 50. Minor nosebleeds are still likely for him under 50, as well. We were told that as long as his platelets are over 10, and really anything over 30 especially, is enough to keep any catastrophic bleed at bay. It will be the bruising that might linger. My son has had ITP for 18 months now and his counts constantly go up and down, reaching a "high" of 290 about every six months and a "low" of 8 when he "crashes". It's a bit of a roller coaster, but even in just 18 months we've learned to "read" his body and we can now gauge his counts fairly accurately just by looking at him! Some days he's just one big bruise and other days there's no sign. Good luck - kids are super resilient and we've found ITP to be very manageable. Thinking of your little one!

[kelb1975 in reply to MaineMom3]

Thank you, I agree with you when you say you can "read" their body. You wouldn't know she had ITP at all at the moment as all the petechiae rash, bruises, any lip blisters have cleared up completely. Be lovely to think that was the end of it and not the effects of the IV.

I am now convinced that her mood swings are caused by low platelets because since the IV appeared to start working her moods have improved 100%. All the doctors have told me this isn't a symptom but it seems to be quite a coincidence if it isn't related.

At the end of the day I am just so grateful that its ITP and nothing more serious.

[MaineMom3]

Yes, we are thankful, too! Especially when at first they were running tests for leukemia. So scary!!

I strongly believe my son gets more tired when his counts are down (tired = cranky!), but the doctors have yet to recognize this as a symtom. I've seen so many other people say the same thing, though, so I'm going with my "mom instinct"!

Statistically the IV usually does the trick for young children with acute ITP, so I hope that is the case for your child! We've been told that our son has just had a fluke recurrence, so we're also hoping we are at the end of this!!

[kelb1975 in reply to MaineMom3]

Summer was also tested for leukemia and I never want to go through that again x

[sgreenhalgh]

Hi I have Chronic ITP and I have IVIG every 4 weeks to keep my platelet count at a safe level. I have never had any bleeding even when my count went down to 4 so I don't know if it is normal to bleed after the IVIG. I would definitely mention the bleeding when she goes for her bloods.

[kelb1975]

The consultant called me tonight and said the bleed is nothing to worry about and it seems the IV has started to work

[toolski]

glad to hear its nothing to worry about,poor wee souls having to suffer all this at that age,i realy hope they can help with better treatment for her,was she ok after having the IV i was sick as a pig each time the day after treatment,worst headaches i have ever had and was sick as well?

[kelb1975]

Hi all.

The doctor rung yesterday to give me Summer's blood count. She said it's 145 (yippee). She also said this has nothing to do with last weeks IV and Summer looks like she's started to recover. Is it too early to get excited or could this really be the end and how likely is the possibility of it returning?