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TOPIC: 11 mo diagnosed 2 months ago and nothing helps!

11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66264

  • Karolina
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Hi everyone.
I am new to this forum and looking for some kind of support and advice.

My little lovely daughter, now 11 months old, has been diagnosed on the 1st of February this year. Since that day I have been living in a hospital with her (!) and now I am at the point of losing hope that this nightmare will ever end. What bothers me most is that her responses to IVIG and steroids have been very poor so far and that such resistance to treatment might indicate that her ITP is more likely to become chronic. I hope you don't mind if I put here some details of our story. I would be interested to know what is your personal recommendation in terms of turning to "watchful waiting" at our stage.

To the point. On the 1st of February I saw “deep” and dark bruises on my daughter’s face which appeared after small trauma. I rushed to our paediatrician and from there I was directed straight to the emergency ward. The blood test showed 9.000 PLT and immediately we were admitted to the hospital.
The next day we started 3-days long course of IVIG. On the second day of IVIG her counts were 11, two days later it was 5. No response at all! Our doctor said it is not typical for a child not to improve after IVIG and she recommended steroids. She said though that a bone marrow biopsy was required before starting steroids. The biopsy was done on the following day and it confirmed the diagnosis of ITP. It showed there are many megakaryocytes in the bone marrow, however most of them did not produce platelets. This, as I was told, is typical in ITP since the antibodies attack not only platelets but megakaryocytes as well. Nothing alarming in spite of that.

So we started a 3-days long round of high dose metyloprednisolone infusion…. On the second day blood test results showed no improvement, two days later it was 40 plt. We were to be released in the next two days provided that the counts wouldn’t go down. In two days her counts were back to 11!

After that it was just playing “guess which steroid will help” game. She was given different doses of prednisolone, dexamethasone and hydrocortisone. Some of that went in form of pills, some as infusions through veins. Her counts were between 20-30 at this point and my frustration grew. The only thing I saw were horrible side effects. I was reading a lot about the disease and did not understand why would they treat so aggressively when the counts were above 20 already. Moreover, all the bruises had already disappeared by this time. But the doctors insisted on treating…

Finally we did the second round of IVIG preceded by high-dose dexamethasone infusion. Right after IVIG there was no response. How great was our surprise when 3 days after IVIG, i.e. on the 28th of February the counts shot to 117! We were released from the hospital on the same day with the feeling that the struggle was all over. It wasn’t.

The blood check was planned for 11th of March. My daughter had no single bruise or petechiae on her body so I went for the blood test pretty reassured. She was still on the lowered dose of dexamethasone with all the side effects of that so the only thing I was waiting for was to confirm that her counts were high enough to go off the steroids finally. The count was 6….

When we came back to the hospital I started to openly undermine the doctors’ opinion regarding steroid therapy. They continued administering dexamethasone which gave more and more side effects and no real improvement in counts at all (it went up from 6 to 16 then back to 5 and so on). I regret I was not brave enough to refuse steroids. Finally in the second week of hospitalisation my daughter’s blood pressure became so high (one of the steroids’ side effect) that doctors got a bit scared and started to lower the steroid doses with intent to go off them finally.

In the third week of hospitalisation we did IVIG for the third time. It raised the counts up to 40 but we had to stay in a hospital due to extreme hypertension caused by previous steroid treatment. At this stage I finally reached some kind of a consensus with doctors. It was agreed that my daughter wouldn’t be treated with counts of 20 PLT or above and provided that she has no bruises or petechiae at the same time.

We were released last Thursday (4th of April). The relief was short-lasting. On Saturday we saw some petechiae on our daughter’s body for the first time! It scared us so much that we rushed to the hospital fearing that her counts would be near to 0. It was 23…. Not so bad as for her at all….

So here we are again in the hospital. The doctors say that with the counts so low and petechiae we can be released only on our request.

I don’t know what to do. During last weeks I kind of got used to ITP and I am not scared of hemmorhage. Living in a hospital during spring months seems unbearable. On the other hand the truth is that I cannot guarantee that 11mo toddler doesn’t hit her head. I cannot tie her up to the bed. Living in a hospital means safety. Then ….. I go online and read that in the UK children are only treated when there is active bleeding. My daughter’s little petechiae seems nothing like active bleeding at all! From that perspective our doctor’s recommendations seem like a miserable joke.

I live in Europe and I know some doctors in the US have much more liberal approach.

I am so sorry for such a long post. If anyone ever reads it through, please tell me, what would you do????

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66267

  • Hal9000
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Hi Karolina, some would say 'just treat the symptoms'. Hopefully Sandi doesn't have a patent on that phrase, LOL.

You may want to educate yourself on 'wet purpura' verses 'dry purpura'. Maybe ask your doctors what it is, even after knowing the answer yourself. It's likely you'll get more respect from them once you demonstrate competence. As I recall, one shouldn't expect some sort of unmotivated hemorrhage (eg ICH) without first experiencing wet purpura. Not sure. My recollection only. Best to look it up yourself if no one comments.

You may have already seen. No IVIG response, no steroid response, but will respond to both, is characteristic row 2 response in my ITP treatments table. See note 3.
bottools.com/Hal/ItpTypes.html

For children, something like 60% will spontaneously recover from ITP within 6 months. Something like 80% will recover within 12 months. So the odds are definitely on your side. Not to worry about the poor IVIG and steroid responses. No 'brave' treatments are needed at all.

If you decide treatment is needed why do anything other then IVIG and steroid combination? You've got to the point of knowing what works and what doesn't. Leverage it. Because of side effects, might try to see how low of a dose of steroids you can get away with per IVIG treatment. I'd guess somewhere between 1/2 to 1 mg prednisone per kg of weight is going to do it.

I assume Promacta or Nplate is not available where you live. If they are, either of those would be good alternatives.

Is she getting a daily (children's) multi-vitamin? Some Folate and/or B-complex, and Vitamin D is probably a good idea as well. Need that immune system making the correct decisions about what is foreign and what is not.

Hope this helps.

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66269

  • th8899
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Karolina, my 11 years old son had a very similar experience as your kid. You could see my post titled "11 years old son just diagnosed with ITP". www.pdsa.org/discussion-group/12-newly-diagnosed/30194-11-years-old-son-just-diagnosed-with-itp.html

Same as your kid, my son did not have a response to either IVIG or Prednisone. When they gave IVIG and Prednisone together, he has a good response, but it only lasts for one or two weeks. I think for the first couple of months, my son's situation was worse than your kid. His platelet counts constantly remain under 10K and he had petechiae, bruise, and blood blisters in the mouth. Four months in the journey, we were almost lost hope. Then all the sudden within 5 days, his count jumped from 5K to 200K+. Right now we are still on 50 mg Promacta since we do not know if it is Promacta eventually worked or he is just recovered. But we will see our hemo by the end of this month to decide if we could stop all med. Don't lose hope! Even with severe refractory ITP, for children, they still have a pretty good chance to recover within a year. If you could have the option to use Promacta or NPlate, you definitely could give it a try. Prednisone is evil. My son was on it for over 3 months up to 100 mg per day. He gained 20 lbs. He has been off it for over 2 months now, but not lose a pound yet.

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66276

  • Hal9000
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Huge thanks go to th8899. He is the one that made the discovery that IVIG plus steroids can work, and alone they do nothing in a row 2 response. Wow! Never read any published study talking about the oddity, or, read reports here describing the phenomenon either. With his realization, other accounts here, who had IVIG and steroid responses that seemed to magically come and go, suddenly made sense. They always worked when used together.
Thank You!

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66280

  • Karolina
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Thank you so much for your replies!

Hal9000, your ITP treatement table is amazing. It gives me some hope since it indicates a high recovery rate in a row 2. Please let me make sure that I can well understand your table: does is say that full remission is common in row 2 but only with Promacta and Nplate or is a spontaneous remission common too? I know that Revolade is available in my country and it is in fact the same drug as Promacta, just sold under different trade name. I've already talked to our doctors about Revolade and they seemed very sceptical. They said it should not be prescribed to children before ITP proves to be chronic and warned me about possible long-term side effects which are not yet known. On the other hand they mentioned trying immunosupression which sounds much more scary and risky to me especially given my child's young age! When it comes to vitamines, she takes vit C and D. The levels of vitamins and folic acid in her body have been checked though and it is all in norm.

th8899, I have just read the topic you started regarding your son. You have been through a lot in recent 6 months and I am so so happy it has stabilized finally! I keep my fingers crossed for your son. Please keep me updated about stopping Promacta.

Tomorrow another blood check (I hate those punctures).... I am trying to belive it will be above 20

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66286

  • Hal9000
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Karolina, glad it helps. I've yet to see someone with a row 2 response not achieve remission. For adults, it can take a long time - think many months to years. For children, the statistics seem to indicate less than a year. In adults it appears that getting counts up speeds recovery. Adding low/medium dose steroids to the mix, at least initially, seems to speed things too. I wonder if the doctor that is experimenting with different steroids is actually just speeding the response.

Right. An 11 month old is too young for Promacta or Nplate. My oversight. You've got the key though, IVIG and steroids, figured out.

Lots of adult row 2 folks have tried various suppressants and related things in the past that did NOT work. There is a list of failed treatments in this post.
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535
You might find the info on Folate in there interesting.

I mentioned a multi-vitamin because they contain some trace elements that the immune system requires small amounts of. Zinc and Selenium come to mind. I think there are others. Keep in mind. Your child has ITP and the reason is because the immune system has made a mistake. Where is the study identifying what adequate vitamin levels are in those with auto immune diseases? I've not seen one.

As for Vitamin D, skim through the page linked below. It may not resolve the Flu, that hasn't been proven, but it seems to do great/fantastic for prevention. My anecdotal personal opinion is that it can do both. As I recall there are dose levels recommended for children in there too.
"Vitamin D And Flu Prevention | Strengthening Innate Immunity"
www.goodlivingwarehouse.com/vitamin-d-and-flu-prevention-strengthening-innate-immunity/

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66291

  • Karolina
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Her count was only 2 today... This is becoming a nightmare

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 week ago #66292

  • th8899
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Karolina, hanging there. This is normal that number is going up and down for ITPers. Our first couple of months were exactly like that. Just focus on the symptom, not the number. My son sits at 5K for a couple of months, but he did not have any active bleeding. Give sometimes you will know exactly what to look for. Kids are a lot more resilient to low platelet level.

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11 mo diagnosed 2 months ago and nothing helps! 4 months 1 day ago #66349

  • Karolina
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Hi everyone! I want to give a little update on my daughter's ITP fight. On Monday she started her 4th course of IVIG. It was administered in 4 doses one dose per day so the infusion finished on Thursday. She started from 4 PLT (blood count on Sunday), imoroved to 40 PLT (Wednesday) and then to 68 (today i.e. Friday count). The increase is not spectacular but taking into accout our previous ITP history it is fully satisfactory for us. Surprisingly her counts went up with the help of IVIG alone, i.e. without steroids (she continues to have a very high blood pressure induced by previous steroid treatment so steroids had to be avoided this time). ITP is unpredictible, isn't it? My doctor said that even slight differences in IVIG products could make a difference and they've tried 3 different products with her so far. Still it does not make up a logical whole for me. Anyway I am very happy to be released home for Easter and hoping this time we can stay away from hospital for a bit longer!

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11 mo diagnosed 2 months ago and nothing helps! 3 months 4 weeks ago #66361

  • Nanuka
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Hi Karolina, mine is 11 months old too ... it is fifth month since her diagnosis... I remember being nervous, pissed off and even depressed first month from her diagnosis ... but I am getting used to it ... I do not know for sure but it should have end. Maybe in 6 months , one year or more but it will end some day for sure... just we should let their body “restart” , am also against treatment for itp however already we did three IVIG transfusions because of her numbers being very low... Statistically children less 10 years recover within 1 year and some of studies say 90% reovers in one year and part of the chronic recover in 3-5 years .... I am giving my LO papaya extract ... I would suggest to try... I probably does not increase the count but maintains themp at stable level ...

Good Luck and try to be optimisic ...

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11 mo diagnosed 2 months ago and nothing helps! 3 months 4 weeks ago #66365

  • Hal9000
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Karolina wrote: ... The increase is not spectacular but taking into accout our previous ITP history it is fully satisfactory for us. Surprisingly her counts went up with the help of IVIG alone, i.e. without steroids (she continues to have a very high blood pressure induced by previous steroid treatment so steroids had to be avoided this time). ITP is unpredictible, isn't it? ...

To this observer, I'm feeling the same way, 'fully satisfactory'. You know, some steroids, like Dexamethasone takes several days to wear off. Maybe that is the case here? Perhaps that would explain why the blood pressure remains high as well. I don't respond to steroids so I'm guessing here.
LOL, in my own way, I've been spending the better part of 2 years trying make ITP more predictable.
The following user(s) said Thank You: maria3132

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11 mo diagnosed 2 months ago and nothing helps! 1 month 3 weeks ago #66915

  • Karolina
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A quick update on my daughter. We spent 2 months away from hospital, which gave me some relief. However, I could see some bruises and single petechiae on her body during that time which indicates that her levels were below 10 for most parts. After 2 months we decided it was time for immunoglobulin. Blood checkup showed 4.000 PLT and we were admitted to the hospital. The only good news is that immunoglobuline raised her counts to 47 so we were released home after 3 days.
Not losing hope for remission, but is seems like waiting for a miracle now. I am a nervous wreck watching my almost 14 month old running and falling all the time.

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11 mo diagnosed 2 months ago and nothing helps! 1 month 2 weeks ago #66920

  • Hal9000
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Karolina, it is really strange. Some hospitals will only give someone (an adult) both IVIG and steroids for low platelets, which is a bit of a problem treatment-wise. One never knows which one helped and which one didn't. In other cases. Some hospitals will only try them one at a time. Usually steroids first and then IVIG if steroids didn't work. In this case, one never knows if both simultaneously might have worked with extraordinarily good results.

Still, 47 did get the job done. Good to hear you got 2 months of relief. Just gotta give that immune system some time to sort things out.

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11 mo diagnosed 2 months ago and nothing helps! 1 month 2 weeks ago #66921

  • Karolina
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Hal900, it only happened once that high dose steroids together with IVIG boosted my daughter's counts up to 117, however it lasted only for couple of days. Extraordinary result means a sustained count for me, not 3 digit one. As long as possible I want to avoid steroids because of their terrible side effects. Among all available treatments IVIG seems to be the least toxic. If she reaches 12 months mark, we probably will be offered eltrombopag (US promacta) but of course I am hoping for earlier recovery.
Now we decided to check the bloods every 2 months unless the symptoms intensify earlier. Hope to have another 2 "hospital- free" months...

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11 mo diagnosed 2 months ago and nothing helps! 1 month 2 weeks ago #66930

  • Hal9000
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Karolina, it is this post by th8899 that makes me think a 3 digit count is possible with combination treatment.
pdsa.org/discussion-group/6-general-itp-discussion/30313-need-advice-please.html?start=60#66385

Yes. Between steroids and IVIG, IVIG is pretty benign which makes it well suited for children.

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