Almost 5 year old daughter newly diagnosed with ITP

Hello,
First I would like to thank all the people who have posted on this about itp. It has helped me a lot in this helpless journey we are in.
On August 27th, 2018 my daughter got the booster mmr shot (I mentioned to the doctor that she had had some diarrhea and wasn’t feeling great before she administered) the same day we got her annual blood test for her 4 year old well visit. A few days later I got a call stating that her platelets seemed low and that we should visit the hematologists regarding this. Even though the doctor mentioned we shouldn’t be too worried because they weren’t dangerisly low I began my google mania. The things I was reading were terrorizing me until I pinpointed to ITP. Meanwhile I made an appointment to the hematologist but it wasn’t for another month. Long story short my baby girl got sick with a fever. I gave Tylenol but then switched to Motrin big!! Mistake next morning she woke up with red dots all over her (petechia) her pediatrician advised us to rush to the hospital her platelets dropped to 8,000. The pediatric hematologist advises we do ivig and so we did as they said because anything under 10,000 is dangerously low and can lead to severe bleeding. Before they started ivig they gave her Tylenol and Benadryl to brevet her fever from spiking. 2 bags of ivig was given with constant monitoring for fever. We were discharged after 2 days. After that we were getting weekly blood tests with normal platelet level counts. her levels stayed up until a few weeks ago she got a low grade fever and we noticed a petechia on her belly. Nov 6th Back for blood test they had dropped but nothing too low (101) the next test they went even higher than that. Just when we thought we were doing great for a few weeks after that on Monday November 26th we went for our weekly blood test it comes back 5,000 we rushed to the hospital and had another round of ivig but were discharged after 8 hours (as soon as the ivig finished) waiting for Friday’s blood test to see results but today she has had a fever so we took her to the pediatrician it’s just a cold but it seems whenever she gets a little sick her levels just plummet.

Anyone have advice or similar experience? I’m so scared and cannot see the light at the end of the tunnel. My heart aches with the idea that my almost 5 year old active daughter will never be able to be normal go to gymnastics and run at the park again. I’m trying to be strong but I cannot help feeling helpless. Should I go get a different opinion?

Thank you in advance for any information you may have to offer.

For what it's worth Turbo, the statistics for children are pretty good. For children something like 60 to 80% of ITP cases self resolve in less than 6 to 12 months. I think there is another statistic that says a low counts (typ for row 1 or 2) like that portends a good prognoses percent as well. Not sure.

I do notice you have included 3 possible triggers. MMR vaccine, Motrin, and Flu. The way things seem to be coming and going, Flu looks pretty guilty to me. I suppose MMR and Flu combination is pretty possible too. I've done searches on this board for MMR before. I think your story is a first in this regard. If you're seeing a children's hematologist, maybe they have a better feel and knows how MMR vaccine triggered ITP plays out. Comes and goes, or is constant.

As for a second opinion. Didn't hear anything in your story that would suggest that. You might take a look at the 'childrens' section of this paper for more info. Notice that it is published by ASH, aka American Society of Hematology.
asheducationbook.hematologylibrary.org/content/2011/1/384.full

Thank you for your fast response.

The Mmr from what I have researched can be a trigger, her hematologist thinks that in this case it wasn’t the cause because the same day she got the booster mmr she had her blood drawn and her platelets were low. She doesn’t think that platelets would drop so low within a 2 hour span. Unfortunately because there are combinations of possible triggers one being that in early July she had strep etc we just cannot pinpoint what exactly caused this. What I can say for sure is that whenever she gets a cold or virus her levels drop fast. The first time she was hospitalized and got the ivig treatment the hematologist ordered a viral panel (swab in the nose) that indicated she had a virus (even though it took a week for us to get the results). So this Monday which was exactly 2 months after her first ivig her levels dropped to 5,000 I requested another virus panel to be done. As soon as I get the results I will write an update on here.

You mentioned that you read that when levels are so low there is a better prognosis. Do you recall were you found this info? If not it’s ok it did give a tiny bit more hope.

Thank you Hal9000!!

Ah, ok. Counts were already low before MMR.
For lack of anything better to suggest, does she take a children's vitamin? I've learned from my ITP experience that there are a number of vitamins that need to exist for our immune system to be most effective. Being effective in deciding what is, and what is not, foreign. I could harp about a B-complex vitamin, but I won't, LOL.

On the low counts. A form of the statistic was actually in my earlier link. Here is the specific sentence.
"
The 5%-10% of children who develop chronic ITP tend to be older, are more often female, and usually present with a higher platelet count.
"
I think it goes like this. She's younger and has lower counts - so that is working for her. But she is female - and that is working against her.

She does take a children’s multi vitamin.

Please boast about the Bcomplex vitamin I’m interested to learn more and desperate to do anything to help her recover and keep those counts up.

What I was thinking was Folate, Vitamin D, Zinc, and Selenium.
In my own efforts here, there seems to evidence that the Flu with a Folate deficiency may be a ITP trigger. Vitamin D seems to stimulate the 'innate' part of the immune system to fight the Flu. Small amounts of Zinc and Selenium are known to help with T cell cloning/proliferation. Probably getting enough of those with a multi vitamin. I think if one is vegan/vegetarian the list is longer. Not familiar with that.

What do you think, have I left any out?

Turbo, hi. Hal has given you a lot of good information. Quick onset, very low numbers at diagnosis, and young age are all working in favor of your daughter being an acute case. However, even if chronic, your daughter will likely be able to live a normal life. It does take time to learn how to deal with ITP and I know it's not easy.

One of the best researchers on childhood ITP is by the lead author if this study: www.bloodjournal.org/content/124/22/3295?sso-checked=true

You can find a lot of related studies and summaries of studies that will have similar conclusions.

www.bloodjournal.org/content/124/22/3295?sso-checked=true

You can check out my son's story by clicking on my profile and then navigating to the thread about my 3-year old. It took him a good 4 months just to cross the 100,000 line without the help of IVIG. It's not uncommon for counts to drop any time a kid catches a virus, until the body figures out that platelets do not equal the virus.

Here is an update just as I suspected when we were hospitalized last week I requested a viral panel as the first time she had a virus. Yet again this time RSV came up. I’m walking on egg shells every time she gets a little sick to the point I don’t know if sending her to school is benefiting her or not.

Thank you for your response Maria and Hal.

Maria how long has your little one’s numbers been at a normal range for?
My daughters go to normal and once she gets sick they plumate. I mean from one week they are over 150,000 and the following week they drop to 5,000. I read in one of the threads that your sons levels were always staying low did you do anything to help them go up?

Turbo, we only did ivig when levels dropped below 10,000 and I gave him papaya but I can't be sure if that's what helped. His doctors said it wouldn't be unusual for platelet numbers to plummet with new infections until his body figured it out. You can read the play by play in my thread: pdsa.org/discussion-group/6-general-itp-discussion/30129-petechiae-but-no-bruising-in-3-year-old.html

I think the fact that drops correlate with viral infections is an encouraging factor for your daughter.

Try not to put the horse before the cart. Many children end up having acute ITP. It's frustrating at first but does get easier. Just try to take one day at a time. There is a lot of hope!

Your daughter can go to gymnastics and run around like a normal child when her counts are good. When they are above 50k, take full advantage of that and let her have fun!

We are three weeks after her second ivig. Last weeks blood test was the highest platelet ever it was over 600k. Is it possible within a week and 3 days that platelets can drop really low? I found some petechia on her during the weekend which caused my first major panic attack since diagnosis. The rollercoaster is driving my anxiety to go through the roof but I’m really trying to stay strong for her.
Today we have another blood test please pray for my little girl I’m almost convinced we will be in the hospital again today.

Thanks again to everyone who has been a good support to me and for opening up about your experiences with itp

IVIG is a very temp solution. 2 weeks after IVIG and your kid still had 600K, which is exceptional!. Usually, IVIG only lasts a week or two. To your question, platelet count could drop fast. My son had 263K on a Friday, but the following Monday he had petechiae and blood blisters in his mouth. His count dropped under 10K in less than 3 days. We used to be like you checking my son multiple times a day, even a slight hint of petechiae will send us panic. Now we are a lot calmer (ITP is only two and a half months for us so far). We knew what to look for. As long as your kid does not have active bleeding, don't panic. My son is living with a count around 10K for 3-4 weeks to wait for Promacta to kick in. He is going to school normally (No PE class though). Stay strong and be positive.

Petechiae does not always mean low counts. You want to see if they get worse over the next day or so. A few here and there may not mean anything. I hope her CBC is okay! Let me know!

Sandi-Her platelets indeed dropped drastically, they went to 80k. During the weekend she was sneezing and now seems to have a runny nose (that she refuses to blow) just from previous drops we know that when she gets sick her platelets drop. At this point the hematologist wants us back for CBC on Friday, they will either go up or continue to drop. I’m praying it’s up from here.
Th899-how old is your child,if you don’t mind me asking? My daughter will be 5 in a few months and I’m thinking she will be staying home from school. The logic behind this is because it’s flu and cold season she is too exposed and just from past experience her numbers just decrease especially when she has a virus. Both times she went below 10k we had a viral panel done and both times she had a virus. In pre k it’s just so difficult to protect germs so I think she will remain home.

That's a huge drop, but counts are still in a good range (for now). Sometimes a fast drop can cause symptoms. Hopefully counts will still be good on Friday, but as was said, IVIG is usually temporary. It's great that it lasts a few weeks though, it can be a good way to manage things until you get a handle on it all or until it remits.

My son just turn 12 last month. We are only two and half month on this ITP journey. You could read the whole story here

pdsa.org/discussion-group/12-newly-diagnosed/30194-11-years-old-son-just-diagnosed-with-itp.html

My son is a middle schooler and keep him at home is not an option anymore. Also we'd like him to go to school and have a much normal life as possible. I think if your kid could maintain a count above 30K, it should be safe to go on normal life (any contact sports should be avoid).

Hello everyone,
What a roller coaster ride. As I mentioned last Monday my Daughters counts dropped to 80k drastically from a previous week count of 600k. We went back Friday and they have increased to over 300k. Just insane how fast they can go up and down. My daughter even said to the hematologist I think I will have a high number because I’m feeling much better now broke my heart how aware she is of the situation and how brave and normal it is for her to get blood drawn. She gets it once a week for the past almost 4 months.

On another note since reading all the discussion boards I’ve decided to start giving her papaya leaf extract (anything to help her little body stay strong) we only added a few drops into her night bottle of milk. If anyone has any input on the papaya leaf can you tell me thoughts and about how much I should be adding per day. I purchased one from amazon that was recommended in I think maria’s Forum and my daughter didn’t even realize in was in the milk.

Hi Turbo,
Sorry for the long silence - i saw your post on my phone but couldn't reply until I logged in from my laptop today for some reason.
For papaya, I was giving 1 tablespoon twice per day. After a few weeks, we dropped to once a day and then eventually he stabilized so we stopped altogether.

Hello everyone,

Happy to report today’s numbers of a whopping 233,000 platelets. I think it’s safe to assume that her numbers only drop with a virus and since we are in the end of December only a prayer I feel can help us. We are being very proactive in not allowing too many people/children around her. Christmas did not feel like Christmas since no one was invited for the festive celebration. I guess it’s not worth risking her getting a virus.
The hematologist was happy with today’s number but she has suggested keeping her home from school for the next 3-4 weeks. She said too many virus going around right now and she would like my little to keep high numbers for the next bag without needing ivig. As horrible as this makes me feel I know that it’s flu season and since she cannot get the shot I’d like to shield her from getting that sick. I can’t imagine what the flu would do to her numbers.

Wishing all of you happy new year my prayers are that 2019 will bring health and luck to everyone. I’m truly grateful to all of you sharing your oh so personal stories with me to give me hope and knowledge.

Hello all,

My daughter is now 5 and a half. In September we hit are year of having Itp which is terrifies me!!

Quick summary of her journey: 3 ivig treatments (September,November,March) in between those her levels go above 100k and drop here and there with signs of petechia and bruising never wet. All 3 times of IVIG the drop below 10k was caused by a virus (each time I had them do a viral panel) Her hemo had us practically doing weekly and bi weekly blood draws which was basically killing me slowly and my daughter even though she was a trooper was for sure traumatized. Mid year i decided to seek a second opinion. So I locked an appointment in Manhattan New York City with a lovely hemo in Langone NYU. Even though she was more concerned with my well being because this diagnosis has consumed me, she ensured us that it is nothing more than itp for her. She also said that we don’t need to get weekly nor biweekly tests and that she doesn’t treat with ivig unless the child is extremely active for fear of hitting his/her head. She couldn’t say anything regarding my little one possibly overcoming this but just by her being so relaxed about itp it gave me peace of mind and I don’t go running to the hemo every time I see a few petechia spots.
Since March 2019 she has been doing great no illness and very few petechia here and there. 2 days ago she got a fever in the middle of the night turns out she has an ear infection, I searched her body and no signs of petechia (usually she had spots instantly when sick or a fever showed up) as scared as I was I was relieved and happy because it was the first time since last September that she didn’t get a spot while sick. Next day I come home from work and boom she has petechia. I tried keeping calm and ended up having a mini breakdown by myself. Of course the whys and how and that little hope I had all disappeared again.
The spots seem to look a little different this time around as they are clusters in areas she seems to have hit her legs. Some spots are on her arm and body here or there. I’m trying to not run for blood work hope no more appear.
Anyways Sorry for the rambling but if my daughters journey and me being on the roller coaster ride helps anyone going through the same, I will continue to give updates with hopes of one day being able to say she outgrew ITP.

You are extremely worried - why are you not taking her for a CBC so you know for sure one way or the other whether her count has dropped? When was her last test and what were the results.

You are not doing yourself, not to mention your daughter [children are smart, they know when a parent is worried], any good by having a mini-breakdown and worrying yourself sick. (and believe me I know what it is like to have a child, actually 2, who have health issues)

Good luck!

Hi Turbo!
It sounds like the hemo in NYC provided a lot of reassurance, but with this latest infection, everything came back. It seems understandable. I have a 10-week old with G6PD enzyme deficiency and there is a chance that viruses could send her into hemolytic anemia (we won't know unless it happens, some patients are asymptomatic their entire lives). Just the thought of it stresses me out, and I also remember the emotions with my son's ITP very well.
What ended up happening? Is she feeling better? it could be that her body is sloooowly regulating over time.
Hope you've both had a nice summer otherwise.

Hi Maria,
We never did blood work and once the antibiotics for ear infection started to work she wasn’t getting any more spots. She only had the petechia and one really dark bruise (darkest we’ve had) where she would hit her legs and body.
We are a bit torn with what the right thing to do since we’ve had one hemo testing all the time and treated with ivig as soon as platelets drop 10,000 and under and the other hemo was the total opposite. This itp thing has really tested my strength. I totally understand people telling me to stay calm etc but my brain just cannot do that as much as I try. Please know that I will keep your little one in my prayers and hope that it’s asymptomatic forever!

Hello Mela, thank you for your advice. I totally understand I’m not doing myself nor my child any good by worrying so much I just cannot shit my emotion of being scared and worried. The second she mentions her belly hurts or I see even one spot of petechia I spiral and once she gets better I try to tell myself I won’t get to that again something else happens and back to worrying I go.
Thanks for the advice.

That sounds very promising - the fact she got better on her own, and quickly!
On the emotional front, you might want to investigate yoga and meditation, as well as cognitive behavioural therapy, which can't change the situation but might give you some tools for getting through stressful period. Let's hope you won't need them any time soon, though!

Thank you Maria, I used to do a ton of yoga but these days it’s been very tough to focus my thinking and clear my mind.

Just a little update, She is now back to school which she needed some booster shots (of course no live vaccines) she got two polio booster and dtap booster. 2 days later here come the spots, we got tested at 22,000 yikes that caused terrible fears but her hemo reassured me since she isn’t feeling sick they will go back up and not to worry. Sure thing next day they were so faint we can barely see them.

I’d like to ask for some info and advice to all parents that their kids are in school. Now in our case her platelets go very high above 100,000 so I explained to her new school that I would let them know when she has symptoms to not let her run and play during recess. I guess the whole itp scared the teacher and I see my child today off to the side sitting by herself on a bench. I went right away to speak to some one and of course got very emotional. None the less my question is, do you let your kids play in the little school park?

Sandi, my daughter is almost 3 months in to an cute itp journey. She is has a positive ANA and DAT. She has had 5 critical drops in the almost 3 months. She responds to steroids for about a week or two (horrible side effects) and IVIG gave her asceptic meningitis which was awful. We are talking about Rituxan within the next week or two. Are we reacting to soon with the Rituxan? She was at a count of 5,000 this past wed. We live in CT and our hospital does not take a wait and see approach - they treat below 10,000. I am so confused about the wait and see approach versus the awful side effects of all of the treatments.