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Symptoms of a dropping number

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13 years 8 months ago #21923 by jkfrye1982
Symptoms of a dropping number was created by jkfrye1982
Brooke (6 years old) seems to get a bad attitude when her numbers go down. Is it my imagination or do children really get moody, and stop listening? She also starts too look pale and the skin around her eyes looks purple. What symptoms do your children have when thier platelets drop (besides brusing)?
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13 years 8 months ago #21924 by BethF
Replied by BethF on topic Re: Symptoms of a dropping number
Yes - Brady also gets very pale and he gets dark circles (purplish) under his eyes when his count drops. Oftentimes he doesn't even have any bruises, other than what he always has as an active kid. When his count falls below 10k he will also start getting regular nosebleeds. He has been fairly stable for a while so it's hard to remember behavior changes but I never really registered any. He does get much more tired than usual when his counts are low.
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)
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13 years 8 months ago #21935 by rossfransofia
Replied by rossfransofia on topic Re: Symptoms of a dropping number
I know they say that there are no symptoms when platelets drop- but I have noticed that Sofia gets more tired and irritable.

Also I notice that it takes her awhile to re-adjust when she comes off steroids (sometimes up to a week!) As Brooke been on steroids recently.

Hope Brooke is doing Ok
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13 years 8 months ago #21943 by mparshall
Replied by mparshall on topic Re: Symptoms of a dropping number
My son is 5. He gets very moody and doesn't want to listen when his counts go below 30. He also says his head feels "fuzzy" when they are low too. I don't know how he feels but I know he always says that when his counts are low and it is always before we check that he says it. I think he really does feel different.
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13 years 8 months ago #21946 by jkfrye1982
Replied by jkfrye1982 on topic Re: Symptoms of a dropping number
Brooke hasn't been on steroids since Jan 5th. That was a nightmare once we stopped! The doctors said ITP doesn't hurt and shouldn't make her tired. I find that she does get tired, and very VERY irritable. I guess there is still so much that is unknown about ITP.

Fran-I wish she was doing good, but I can look at her and see her numbers dropping. It's so frustrating! I think she will be back in the hospital this weekend. We really don't want that to happen cause Monday is her birthday. I would hate for her to spend it in the hospital. Our next blood draw is scheduled for Monday as well, but I think we will end up taking her to the clinic in the morning (sat).

Thanks everyone for the replies, support and concern. I try my best not to talk to much about this with my family, so it's nice to get on here and talk to people who are going through the same thing.
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13 years 8 months ago #21963 by juliannesmom
Replied by juliannesmom on topic Re: Symptoms of a dropping number
Julianne is in remission now, but I always called that the "vampire look." Pale translucent skin with dark circles under her eyes. She developed cobalt colored bruising, like blood pooling under the skin, in places unusual for bruising. She also became irritable, fatigued, and depressed, and had difficulty sleeping. Platelets and serotonin have a relationship that I don't have the physiology background to understand, but many parents on this site have noticed their child's mood and sleep pattern correlate with platelet count to some degree.
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13 years 8 months ago #21964 by rossfransofia
Replied by rossfransofia on topic Re: Symptoms of a dropping number
I am so sorry to hear that Brooke's number's are dropping. Sofia has been on that roller-coaster for past 3 weeks and it's a nightmare. Is there a way that Brooke could start another course of steroids to avoid going back to the hospital? Sofia was on a short course a few weeks back to "hold her over" before another treatment and we avoided a hospital stay.

Thinking and praying for you and your family:)
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13 years 7 months ago #22284 by kfs
Replied by kfs on topic Re: Symptoms of a dropping number
Frem also gets pale and dark circles. His stamina is never the same as other 11 year olds, so being tired is the norm. Extremely irritable and stomach aches, sometimes aches in his legs. He does not always actively bleed or have many bruises. His legs and feet are my signal, they have a grey purplish hue.
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13 years 7 months ago #22299 by evelynn
Replied by evelynn on topic Re: Symptoms of a dropping number
i'm an adult with ITP and I've been told the same thing by my doc, That there aren't really any symptoms. That's bull! I feel lousy when my counts are low I get extremely fatigued. Also they've found connections between low counts and depression. It's explained more thoroughly in other threads but basically platelets transport serotonin so when your platelets are low your body isn't receiving enough. Your little ones are correct about feeling a difference when their counts are low.
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13 years 7 months ago #22458 by Brandi
Replied by Brandi on topic Re: Symptoms of a dropping number
Last week, Ryan's dropped to 10,000. The day before the test I noticed he was very moody, not acting like himself at all. When I brought this up with the doctor (after the test results) she said that there really is no link between the mood swings and platelet counts. But I know my child was not acting like himself, in fact... he wasn't even acting like himself on a bad day! I've never seen him like that before.

Turns out that he was also getting a cold at the same time as the numbers dropping. I asked if that could have had anything to do with the decline in platelets as well, but was told it was just the ivig wearing off. Also, that his mood could have been brought on by coming down with a virus.

I guess we'll never really know for sure... but to me, it sounds like the moods and counts could be related.
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
  • 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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13 years 7 months ago #22461 by Sandi
Replied by Sandi on topic Re: Symptoms of a dropping number
Viruses (colds) are often triggers for ITP or causes for count drops. That's a well known fact and should not have been discounted.

As for mood changes/fatigue with low counts - Some people report feeling tired and some people say they have felt just fine. It varies.

As far as depression - that also varies. I have never felt depressed due to low counts and others have not expreienced that either. Some people do though. I've never seen enough reliable info regarding low platelets and serotonin to believe there is a real connection. There are articles that hint at it, but more articles that state the platelets actually carry too small a percentage of serotonin to make any difference. If there are any new articles out there, I'd love to see them.
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13 years 6 months ago #23249 by Brandi
Replied by Brandi on topic Re: Symptoms of a dropping number
Sandi - I wish I would have seen your response sooner! People we spoke to thought my husband and I were crazy when we said we were suspicious that the platelet drops and the virus could have been linked.

After Ryan's 2nd ivig treatment, he got up to 228,000! Oh boy were we excited! A week later a horrible stomach bug hit our house, and low and behold, his platelets dropped to 35,000.

A week later, his hematologist finally called me back and said they could have been linked. So a couple weeks after each ivig treatment, the kid catches a virus! He is getting another treatment Thursday, and his doctor said in about a month we'll know if the reason for the other two drops was him getting sick.
- Brandi
Mom of 3 amazing boys (ages 10, 5/dx ITP 01/2012, and 9 months old)
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