TOPIC:

Hi Everyone,

My child has ITP already 2 months and 1 week.. We wend to children's hospital when she had only 7. After two transfusions of IVG her level was 180 and we were released from the hospital.. After two weeks we noticed petechies again and after blood count it occurred her platelets were dropping it was 92, than after 1 week it was 58 and than below 20.. We made second IVG and it went up to 68, than again the other day and we were released at level of 160.

It was 5th of January when her count was 160, afterwards in one week time it dropped to 99 than after one week it was 207. We decided that she was cured and enjoyed our life, when after one week time her count dropped to 72, at this moment she has many petechies on her face and body and we are doing blood count in two days, I am expecting her level has dropped below 50 otherwise there would not be so many petechies on her body.

She has some problems with sleep already 3 days andI do not know if it just her age or it ITP.

I know that this might go away for 6 months period, however would like to ask if you know by any chance any statistics whether these fluctuated platelets mean good or bad things?

Thanks

Nanuka, children are bit different, as you probably already know since you mentioned the 6 months figure. Nothing comes to mind about count fluctuation statistics. With IVIG, as you have seen, counts go up for a few days then fall down to baseline slowly.

What impressed me was the 207 in there. Counts went up to 160, down to 99, and then back up to 207. A sort of double hump instead of the normal one. In my experience here, that is a good sign. For future reference, another good sign would be the IVIG lasting for a greater number of days/weeks before dropping down to baseline again.

Best of luck to your daughter.

Thank you for your reply... Yes currently IVIG worked only for 1 month.. I hope it will last for longer period..
I will update tomorrow after the blood count.

Hi Guys, We just made blood count and she has 55 count with machine and manual count confirmed 172. Meaning it is under normal level.. Hope she will continue with the same count or more

Nanuka, that is a big difference in numbers. Did you mean 72 instead of 172? Usually the numbers are much closer in value.

Hi, thanks for reply.

I was also confused with this difference and therefore had a conversation with doc and they explained the following:
Children have larger platelets compared to adults therefore the machine sometimes can not count the exact number of abnormal platelets therefore manual count is more exact and it sometimes happens that there is such a big difference.

Have you also heard smth alike?

Ok, I have not heard that before. Sounds like you only need the more accurate number, the manual count number.

That is a very odd statement for the doctor to make. Using analyzers for children is fairly standard....if they had larger platelets than adults they would always do a manual count knowing the analyzers would be inaccurate. You have to rely on the numbers they give you to make a treatment decision, otherwise you may end up treating when you don't have to.

I'm glad his counts are higher though! Getting a month from IVIG is actually pretty good!

Hi, I am quite disappointed today. The result is 21 machine and 61 manual count. Actually she has many petechies all over her face and body, so I was expecting the low platelets this time.

I was so happy during the last week there was not even one red spot on her skin. I just dont understand why they dropped. I was trying to link to the fruits or veggies she was given but however we changed nothing since last week in her menu.. She did not have any flue or smth.. I just cant get it .. I am so confused ... I hate ITP it destroys our daily life.

ITP is like that, constant ups and downs. That's the hard part...you never know what the counts are going to be. The best way to get through life daily with ITP is to pay attention to symptoms. If there are none, it's a good day. Try not to be so dependent on the numbers and take one day at a time.

It's really odd that there is so much difference between the analyzer counts and the manual counts.

Hello Nanuka,
I’m on the same roller coaster ride as you. We have been struggling with my 5 year olds itp since September and pretty much have been living in a bubble for the past few months. We have had ivig twice already and thought that by now we were done w itp...boy was I wrong. From my experience with my daughter her numbers drop drastically low when she gets sick for us this is proven as I had them run a virus swab up her nose each time we were admitted to the hospital and then when her levels drop she is going through a cold or something like that petechia starts arising instantly.

The one hematologist this last drop did notice her blood was clotting in the tube and ran her blood through the machine 4 times. Low and behold all 4 times read different numbers 13, 38,16and one more which he found odd. We didn’t treat and as sooon as her virus/cold went away the petechia was gone.

I don’t know what the next step from here is but I would like to ask what you mean by manual testing as I don’t think I’ve heard of that?

Lastly I’d like to say that I know how you feel as I am a mess, can’t sleep constantly reading and checking her we have even decided to keep her home from pre k the last 2 and a half months. Stay strong this is definitely the hardest thing I have ever had to deal with.

Turbo, have you tried Vitamin D? This article talks about dose levels for both children and adults.
www.goodlivingwarehouse.com/vitamin-d-and-flu-prevention-strengthening-innate-immunity/

Hi hall, thank you for this article. The only vitamin I give her is a multi vitamin which I assume has some vitamin D in it. But after reading this article I’m thinking I should get a children’s vitamin D supplement. I do give her 5 drops of papaya leaf extract at night and 4 drops in the morning. She doesn’t get the full dose as sometimes she doesn’t completely drink her whole milk.

Hi thank you for your reply.. First of all want to answer to your question. My understanding is that manual count is performed when platelets are less than 100K. Meaning that Thrombocytopenia has the place. When the blood is run through machine it is double-checked with manual count. A person who has experience in counting blood cells makes examination in microscope and our Hemo calls it morphology test. Mainly due to abnormal size of platelets they are hardly noticed and counted correctly by the machine, therefore to avoid transfusion when its not necessary they do the manual count. We live in small country and I am pretty sure blood count machines are quite old, so maybe some new ones are more sensitive and have better correlation towards manual counts.

You said since September your 5 years old is in the same situation ho often does petechia come around? Based on my child's statistic its like every second week the platelets drop than they go up.. I do not know why. However it is already one week she has petechia all over her body and face and they do not go away.

Thank you for explaining what the manual process is. I will speak to my daughters hemotologist to see maybe it would be a good idea to do if my daughters platelets drop extremely low again.

Regarding how often they drop...it’s serms to be every 2-3 weeks when we find petechia on her. These past two months the petechia has been disappearing fairly fast I would notice that it’s would start fading after to 3 days.

Please keep me posted on your little ones situation. One thing I’ve learned during all this is that I am not as strong as I thought I was, support as parents is definitely much needed I believe we take it harder than the children do.

Turbo, for adults the amount of vitamin D in a typical multi-vitamin is 400 IU. A separate supplement is 1000 IU but used to be just 400 IU a few years ago. For me, 400 does almost nothing. But the 1000 can make a big difference in a short amount of time. As of late, I'm taking 1000 a day or 1400 with a multivitamin. On any hint of congestion, then take another capsule or maybe 2 later in the day. Seems to be an effective pattern without taking large amounts everyday.
Not familiar with child doses.

Nanuka, hi, nice to meet you, although I wish it was under different circumstances. My son is 3.5 and was diagnosed last August. His platelets climbed to above 100k by mid-November or so and recently close to 300k, so we're hoping ITP is behind us. Having said that, the first three months were marked by ups and downs. He'd get 2-4 weeks of (gradually diminishing) relief from IVIG and then we'd be back. The one thing we did notice was that the stretch of time before the next drop was lengthening as the months went by. I also gave him papaya, which coincided with the beginning of his recovery (which continued after we stopped the papaya). So we have no idea whether the papaya had anything to do with it.
It sounds to me like you are in good hands with the hematologist - ours also always did the manual count when the numbers were low and explained that kids do or can have larger platelets. That said, the discrepancy was never quite as big as yours, but our son is older, so, that could be it.
ITP does affect the family's daily life, and there's no getting around that, but you will have really good days too, and your daughter, being so young, has a good chance of a full remission. It can take a year or longer, but take it a day at a time. The community here is really great. Oh, finally, on the sleep - my guess is that it doesn't have anything to do with ITP, especially if you're not seeing any nosebleeds or wet purpura (blisters inside her mouth).
Keep us posted!

Hal, I checked my daughters multivitamin it states that for every 2 vitamins it has 600 vitamin D and it’s reccomended in the bottle to give her 2 per day so 600 iU

Maria, praying for your little ones numbers to stay up. My family daily life has been suffering as all we can think about is when this will stabilize.
If you don’t mind me asking did you notice any patterns as to when your little ones numbers dropped? For example a cold etc? Or was it always after the 3-4 week ivig stretch? For us she maintains normal numbers then all of a sudden they drop and quickly. From reading this wonderful forum I’ve noticed that many cases children keep below normal numbers and have a difficult time getting them up to normal.
At this point all we can do is remain hopeful I’m also trying to not jump to running to the pediatric hematologist office every time I see some petechia I’ve noticed the past few times that they start to fade away after a few days. Hope I’m doing the right thing. Thankfully we have t had any bleeding out.

Maria hi nice to meet u too ... Thank u so much for your story .... we just made count and its 23 I do not know if transfusion will be administered ... Can I ask you how you gave papaya ?? is it papaya syrup ? can u share a link where I can buy it?
Thanks a lot .. Hope your childs story is success and u will never have ITP again ...

Hi Nanuka
I know it's not perfect, but 23K isn't so bad either. I hope it holds or improves from there! We didn't treat unless it was under 10K.
Here is the papaya I ordered, recommended by TJ1989 -- it can be mixed with yogurt or juice and doesn't taste too bad (some of the other preparations are alcohol based and pretty awful):
smile.amazon.com/gp/product/B005TK5MQI

Thanks Maria. How long were you giving it ?? do u know about dozes for 10 months baby ?

You can see our entire journey in my thread - it's right below yours on the board at the moment.
Dosing was tough, I was giving about 1 tbsp a day for a kid weighing about 30lbs, but I really don't know what it would be for a 8 month old. A lot less, I would think? Toxicity basically seems non-existent from the literature I've read, but too much can cause diarrhea, so I'd start small (1/3 to 1/2 tbsp a day at most) and adjust down or up from there.

Here is my thread: www.pdsa.org/discussion-group/12-newly-diagnosed/30129-petechiae-but-no-bruising-in-3-year-old.html

Also, Turbo, your question on patterns we were seeing is easiest to answer by looking at the graphs I made (in the thread). Basically, as time went on, IVIG seemed to be effective longer. The first IVIG was short lived; each subsequent one's effectiveness was longer lasting than the previous.

Hi Maria,

I red your story and it's so helpful. I think your child has recovered in for about 4-5 months so it gives me hope that mine could recover as well.

I ordered the papaya extract you recommended. Will hopefully start from the next week.

Just for the update: her count is 40 K, but she has lot of petechiae and bruises all over her body. Most of them for about 6-8 are small on the legs and two on the arm but there is one big on the knee its like the whole knee is covered with the bruise. When we did count today I was thinking the platelets were below 10K but fortunately we did not have to have IVIG treatment yet.

It is already 2 months and 1 day after last IVIG and three months and 1 week in total since diagnosis. I pray that in three months time maximum we will be able to fully recover. I love her so much and hate watching her covered in bruises and petechiae.

Turbo how is your little one? what is the average number of platelet count?

Hi Nanuka, I’m glad to hear that your little one didn’t need ivig again hope her numbers go even higher than the 40’s.
My daughter had blood work today and we were at 135k on the lower end of normal but I will take it. The doctor said she can go back to school as we need to see how her body will do if she gets sick. It sounds so strange but this gives me such bad anxiety as just a week and a half ago she had some petechia. Her platelets drop so fast that I’m so worried and I almost feel like if we have another drop I may have a nervous breakdown. We are going into our 7th month since diagnosed and the more time passes the more worried I get. I feel like I can’t relate to many of the stories because my lo’s platelets stay at a normal range then out of no where go down. I’m mostly reading stories that they just can’t get the numbers at a normal range. I’m hoping we have a complete turn around and no more drops but I’m feeling scared and not as optimistic as I should be.
Regarding your daughters bruising that’s quite scary cause we get a little bruising little ones scattered not huge ones like you mentioned. But I recently touched base with someone in my area that her son went through itp and she said that his bruising was scary purple and blue spots all over. Fortunately for them he outgrew it hoping that we too have the same fate.

135 K is so good. I suppose it might be considered even in the normal range. I know that ITP is considered only when the count is below 100K.

I hope it remains in this range and will not go down.
When I hear positive stories I become full of energy and am motivated to struggle with this ITP staff. However when I see the new bruises or petechies I become so disappointed want to just sleep and never wake up.

I pray for every child who struggles with this disease.

Hi Nanuka hows ur little ones bruising and petechia?

Hi Turbo,

Yesterday she had count of 30 K.. not promising, however we are still happy she does not require transfusion.

I am counting days to reach 6 month mark, I do believe and hope that by that time she will not have any problems with iTP.

Still today she has many petechia and some bruises as well. How is yours? Hoping he has high numbers still and ITP is over.