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  • Pedmonds
Yesterday 13:55
Return to nursery was created by Pedmonds

my 18 month old son was recently diagnosed with ITP. His platelet count has increased over the last 5 weeks from a count of 3 to a count of 16. We were told initially to keep him out of his usual childcare setting, which is a baby room at a loca nursery for 0-2 year olds. As you can imagine, this can be quite a physical environment with plenty of opportunities for accidents!! 

After his most recent blood test which showed the blood count was still extremely low at 16 we have been advised we should send him back to nursery. We don’t feel comfortable with this as we have read that there is still a severe risk below 20. 

Are we being over the top, or is the healthcare professional being a bit too simplistic - their written advice talks about return to school, but suggests no contact sports until the count is over 50. To me, nursery is basically a contact sport!! 

Any advice would be great!

Thanks :)
  • oldstyle4o
15 Apr 2024 18:13
Replied by oldstyle4o on topic Platelet rich plasma therapy
My Background: 41 year old male

ITP 2008 - remission - Danazol and Rituxan worked.

2024 - Current - ITP came back - Danazol and Rituxan working well and praying for the same result - remission.

In regards to PRP for subjects in remission having had ITP or whom have low platelet numbers I would have to advise against it. Everyone is different but this is my story and I don’t want what happened to me to happen to anyone else.

In 2021 I had PRP to my right hip due to OA and hip pain. It worked great and my right hip feels great present day. So I used to be a proponent of PRP until recently.

2023-2024 I had right shoulder pain that would not heal. Tons of PT and still was not healing. I like the natural route of healing so I tried PRP and got (3) injections to my right shoulder. The injections are given once per week for (3) weeks. For those whom never heard of PRP essentially they draw blood from your arm and spin it in a centrifuge. The healing properties (platelets) are then injected into the problem area. After the last injection, approximately 7 days later, my ITP came back. Now with ITP it is very hard to pinpoint exactly that it was PRP that caused the return of my ITP but coincidentally it’s very hard for me to say that PRP isn’t the primary cause. I wish I had done a platelet count before I got the PRP injections but I did not. But I believe the PRP caused my body to go into overdrive and destroy my platelets. Two weeks ago I was down to 3 platelets. Fortunately now I am in normal range.

So this is my story. I was a proponent of PRP and now I am not. For those whom had ITP as a child, ITP as adult and are in remission, or have low platelets I would do your homework. God bless.
  • Brookiesnana
01 Apr 2024 10:32
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
I have not had a bone marrow biopsy, but my hematologist seems to think it is coming from my bone marrow. We are not allowed to give the injections at home, we have asked about that.
  • mrsb04
01 Apr 2024 03:11
Replied by mrsb04 on topic Excellent Advice for newly diagnosed
Basically N Plate (Romiplostim) tells your bone marrow to manufacture extra platelets because either it wasn't producing enough before injections started or your spleen is destroying your platelets. Yor haematologist should be able to tell you which it is. Have you had a bone marrow biopsy?
Over here in the UK injections are done by the patient at home which reduces the amounts of tests if counts are stable.
  • MelA
01 Apr 2024 00:27 - 01 Apr 2024 00:30
Replied by MelA on topic Low Platelets & High Anxiety
I'm with mrsb - a count of 86k is very good, as long as no symptoms! Unfortunately you may never know what is causing the low platelets - we believe (that includes the hematologist) we know what caused mine, a gamma globulin injection which was required by my husband's company before we could go to Tokyo to find an apartment for a move there. It was shortly after that injection & while in Tokyo looking for the apartment that the petechia showed up on my torso. When we got home to pack a week later I looked like I was beat up in a back alley with a 2x4 & had a count of 11k and dropping - I can laugh at that now, 35 years later. We moved to Tokyo a couple months later while I was on a high dose of prednisone, had THE best hematologist there who actually knew my hematologist here in the US - and later moved to Hong Kong before moving back home.

However I do understand your anxiety - all is right with the world and then bam, something we never heard of muchless dreamed of entered our life (ITP). I am glad your doctor is sending you to a hematologist, I still see a hematologist all these years later & my count is now fairly stable & decent.

Please keep us posted on how the visit goes with the hematologist and how you are doing!!  
  • Brookiesnana
31 Mar 2024 18:33
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
 Thank you for your response. Yes, I do go every week to have my number checked and I get my NPlate injection then as well. The dose for the NPlate is still on the higher side, and it seems to be working. When I first came down with ITP I was in the hospital for 2 weeks with a count of 5000, and was told I was very hard to regulate since nothing seemed to work and was told by my hematologist to wear a mask around my granddaughter since she was in preschool. At this point I guess I am still spooked about taking it off around her, though my husband and I really want to. We do however wear our masks everywhere we go. My new hematologist, when we asked her if my body was actually making more platelets then it was destroying, said it is probably just the injection, which confused us.
  • mrsb04
31 Mar 2024 14:31
Replied by mrsb04 on topic Excellent Advice for newly diagnosed
I have never worn a mask around my grandchildren even with counts as low as 4. I routinely wear them when I go for blood tests and medical appointments but other than that I assess the situation as to whether I wear one or not.
Are you still having weekly blood tests? It seems a bit excessive with a count that good.
  • Brookiesnana
31 Mar 2024 10:35
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
My husband and I feel the same way about masks in stores and about Covid. We are just trying to get the courage up to try to start living life. I am glad you have reached out
  • mrsb04
31 Mar 2024 10:35
Replied by mrsb04 on topic (23 Mar 2024) My platelet count was 174
The whole point of treating ITP is not to normalise platelet count but to aim for a safe count by using the lowest dose of medication to keep a count around 50 to 80
  • CindyL
31 Mar 2024 10:02
Replied by CindyL on topic Excellent Advice for newly diagnosed
Oh, trust me, I get it!  My husband and I still wear our masks if we go into stores.  My brother (who was a fanatic about staying away from people during the pandemic) and sister have both stopped wearing their masks in stores.  We see more people without them than without.  Hubby and I both have health issues which is why we still wear them.  I don't know if we'll ever stop.  The pandemic may be over, but Covid is here for a while.
I'm glad I gave you some peace of mind.
  • Arcee818
30 Mar 2024 22:09
Replied by Arcee818 on topic Low Platelets & High Anxiety
I think my biggest anxiety at the moment is wondering what is causing this. Is it ITP or something else. And the wonder of what tests hematology will do when I start seeing them. I do not handle the unknown well with my anxiety. Thank you for responding though. Knowing others live with low platelets (much lower than mine are or have been) helps ease some of my fears.
  • Brookiesnana
30 Mar 2024 17:21
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
CindyL, thank you so much for your reply. It makes me feel better hearing that there is a possibility of living a normal life. I am slowly going to start taking my mask off around my family. unfortunately I have been masked since the pandemic began, and I am afraid that I will catch everything going around. T hank you again, you are my first response
  • drbean7218
30 Mar 2024 10:28
Replied by drbean7218 on topic (23 Mar 2024) My platelet count was 174
We only reduce the dose once from 75 mg to 50 mg.  After that, we never change it.

We also thought that azathioprine was the key to getting my platelets to stabilise in the normal range.
  • CindyL
30 Mar 2024 09:45
Replied by CindyL on topic Excellent Advice for newly diagnosed
Brookiesnana, speaking strictly for myself, even when my counts were low I didn't avoid my family.  With your numbers as good as they are, I would just live my life normally.  Back when I was first diagnosed, I had a young niece who liked to crawl over me.  My sister would get upset but I told her that if I got a bruise from my niece at least I'd know where it came from.  One Easter a few years ago, we went to my SIL's for dinner.  I didn't know that my other SIL was sick, but I didn't pick anything up. Each one of us is different and may not have the same reactions as someone else.  I had my spleen out in 2006 and still live normally.
Columbia, like I told Brookiesnana, we are all different.  I eat anything I want, including honey, and it doesn't affect my counts.
  • mrsb04
30 Mar 2024 04:56
Replied by mrsb04 on topic Low Platelets & High Anxiety
A count of 86 is completely acceptable. Unless you have any symptoms it is highly unlikely that any haematologist will commence treatment unless your count is under 30. Even then if you have no symptoms a watch and wait approach will probably be adopted. `
At this moment in time there is nothing to worry about.
  • mrsb04
30 Mar 2024 04:50
Replied by mrsb04 on topic (23 Mar 2024) My platelet count was 174
Have you tried reducing Azathioprine at all?
  • Columbia09
29 Mar 2024 23:58
Replied by Columbia09 on topic Excellent Advice for newly diagnosed
Not sure if it applies to others but food might be a source triggering the ITP. In my case, it's the propolis causing me trouble. It looks after my search that other bee related food such as honey more or less results in the drop of platelet count.
  • Arcee818
29 Mar 2024 18:26
Low Platelets & High Anxiety was created by Arcee818
TLDR: Possibly have ITP & my anxiety is out of control while waiting to see hematology. How do you cope?

Hello. I am new here but have read articles & discussion forum extensively. I am glad to have found this site as it has been the most informative. So firstly, thank you!

Background: I am a 42 year old female with generally good health. My only prior issues have been borderline high cholesterol, anxiety & IBS. At the end of February, I went to the ED with severe stomach pain, concerned of appendicitis. Literally every single test, including CT with contrast, came back normal. Except for my platelet count. It was at 76. First time it has ever been abnormal. My PCP scheduled a follow up CBC on March 4 & they were at 51. Subsequent follow up on March 8 with platelets of 120. March 15 they were 123 so she said she thought they were coming back up & we would test again in 2 weeks. The test on March 27, they were back down to 86. I now have an appointment with hematology & was told to watch for signs of bleeding. So far, I have had no symptoms other than some fatigue. PCP thinks it is ITP since all my other bloodwork is "perfect" but wants hematology to confirm. 

I am diagnosed with anxiety & on medication for it but this new potential diagnosis has my anxiety off the charts. I am constantly checking myself for symptoms. I had very minor gum bleeding today & almost went to the ED because of it. I had to calm myself down that it is minor & I can wait until I see the specialist. Especially since I have out of town plans with family all weekend for the holiday. 

For those of you with anxiety, how do you manage living with a platelet disorder (likely ITP) without driving yourself insame with worry? 

Sorry for the long post, i just need people with experience to talk to i guess.
  • Brookiesnana
29 Mar 2024 18:13
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
Thank you for the excellent info. I was diagnosed with ITP 2 years ago and underwent several treatments, which really were ineffective. My hematologist started me on NPlate, but also started me on Rituxin with the hope of getting me off the NPlate. The Rituxin didn't work for me as well as the DR was hoping. I am currently receiving an NPlate injection every week and my count is holding between 130-170. My numbers fluctuate every week. My husband and I wear a mask wherever we go, and while wearing a mask in a grocery store is one thing, we also wear a mask around our family, specifically our daughter and 5 year old granddaughter, who is in preschool and you never know when she will get sick, which breaks our hearts. We have not kissed them in 2 years, we don't eat with them, or do anything family oriented for fear of us catching something and my count dropping. We can't seem to figure out how to live as normal a life as possible. Does anyone have any advice?
Thank you all so much
  • drbean7218
27 Mar 2024 09:38
Replied by drbean7218 on topic (23 Mar 2024) My platelet count was 174
We have tried several times to reduce the cyclosporine A to 25-75 mg daily, but the platelet collapsed after a week.

That's why we stopped at the current level and didn't move forward.
  • mrsb04
27 Mar 2024 09:02
Replied by mrsb04 on topic (23 Mar 2024) My platelet count was 174
Goodness dr bean  what a cocktail of drugs you are still on. Surely it would be good to try slight taper. Protocols state the lowest dose of meds to maintain a count ≥ 50 
  • drbean7218
26 Mar 2024 09:21 - 27 Mar 2024 09:19
Replied by drbean7218 on topic (23 Mar 2024) My platelet count was 174
My haematologist has no plans to slowly taper me off a drug, even though my count is stable.

In fact, we have experienced too many platelet disorder events to go one step further at this stage.

Therefore, my current treatment has not changed since January 2022, which is more than two years ago.

It's a pleasure to share my experience with other ITP patients, also medical students.
  • MelA
26 Mar 2024 00:39
Replied by MelA on topic (23 Mar 2024) My platelet count was 174
Hey drbean it is good to see you - and that great platelet count!!
Think your hematologist may start tapering you off a med slowly since your count is stable?
Thank you for keeping in touch and letting us know how you are doing!
  • drbean7218
25 Mar 2024 05:37
Replied by drbean7218 on topic (23 Mar 2024) My platelet count was 174
My platelet count from Feb 23 to Mar 24 are as follows;
4 Mar 23 - 178
22 Apr 23 - 166
5 Jun 23 - 190
22 Jul 23 - 152
28 Oct 23 - 172
18 Dec 23 - 193
5 Feb 24 - 166
23 Mar 24 - 174

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)
  • mrsb04
25 Mar 2024 04:54
Replied by mrsb04 on topic hair loss
I have been on Romiplostim (NPlate) in the past. No problems with hair loss just awful bone pain particularly in my hips
  • CindyL
24 Mar 2024 09:44
Replied by CindyL on topic New look
No worries!  Thanks again for taking care of the site!
  • CindyL
24 Mar 2024 09:35
Replied by CindyL on topic Promacta side effects
That sucks!  You really do have a lot on your plate!!
I really hope your doctors can figure something out for you.
Keep us posted.
  • Jeff
23 Mar 2024 23:05
Replied by Jeff on topic New look
Yeah, I should have posted something on here before we did the switchover. Sorry about that. We are now all up to date, so there shouldn't be anything new for a while. I'm not sure I'm being notified of replies to a topic, so I'll look into that.

Thanks, Jeff
  • WTow47CLondCty
23 Mar 2024 15:50
Replied by WTow47CLondCty on topic Promacta side effects
No way to get rid of the cysts. Draining some is an option but they just come back or others rupture. Way to many to deal with anyway. Bleeding is a common occurence but usual is short lived and self healing but apparently not with ITP' Just back from Dialysis and still bleeding significantly
  • CindyL
23 Mar 2024 10:48
Replied by CindyL on topic New look
Thanks, Jeff!  I agree with Mel, you do do a good job!  And thanks for listening.
Just a thought, is there some way you could give us a heads up about making changes?  That way we won't totally be surprised by them.
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