I really appreciate you taking the time to give such a thorough and thoughtful reply. It is especially helpful to hear from someone with personal experience. Our family is making progress in convincing my MIL to allow us to have a conversation with her doctors about all this. Hopefully that will give us more facts to go on rather than the emotional turmoil of the unknown.

Thanks so much for your kindness.

Were you put on a high dose?    I'm sorry your count went down and pred was ordered - fingers crossed with a slow taper your count will stay up due to the trial drug.  I certainly understand you saying you are not going to do that pred again!!  I felt the same way when my count hit the gutter before our son's wedding.  Prednisone, the drug we love to hate!!   Sending good thoughts to you!!

I moved to Japan shortly after getting out of the hospital having had a count of 11k and dropping, a bone marrow biopsy, a diagnosis of ITP, on 60mg of prednisone and not knowing if I'd have a hematologist there.  Had a fantastic hematologist in Tokyo.  From there we moved to Hong Kong, I flew Beijing, Cairo, Rome, London, the US, Thailand, Singapore - took the Jet Foil to Macau and to China - and really didn't check my count before doing so, and on a lower dose of pred.    What is funny (in my mind) is back home in the States I would not fly to New Jersey for a nephew's wedding because it was during the SARS outbreak and they were saying it could be spread on planes.  

I have no suggestions really - are you staying in one location? for how long?  
Have you talked with your hematologist about where you are going & what to do if you feel your count went down?  Can you take prednisone with you in case it is needed.   

Thanks mrsb04  and  MelA  !! That gives me a boost of confidence and yes I will be carrying Prednisone with me just in case. Will be staying in just one place. It is just the 18 hrs travel I am a bit worried about. 

Mel
Yes I was put on the high dose  as absolutely black and blue from huge bruises  with a count of 4.  No point giving me IVIg at it isn't very successful and costs a bomb . A waste of precious donations. I was a blood donor pre ITP and would be horrified if I thought my donation was being wasted.
I'm not tapering too slowly as I need to sleep and have to get back down to 5mg asap.

RR01
I wouldn't worry about the journey too much. Mine home from Oz took 35 hours!!!!
What I would suggest is taking some TXA tablets with you too.  Then should you have any mucosal bleeding i.e. nosebleed or oral blood blisters. I carry a couple with me in my purse at all times just in case. 
 

midwest is lucky that in her case  "low platelets alone don't usually precipitate a bleed"
I am younger than her and when my counts are low can have horrendous nosebleeds that last  at least 30 minutes and up to an hour on several occasions.
I was hospitalised before last Christmas with a mouthful of blood blisters and again in May expectorating  fresh blood from my lungs for 2 hours.  

amylynnet...I really feel for you and your family but if your MiL is of sound mind then  she should be the one having conversations with doctors regarding  what future care she chooses to receive. It isn't up to the family to make decisions on her behalf  whilst ever she has mental capacity. All  you as a family can do is respect her wishes and support her. 

Mrsb, yes you're right.  I should have been clearer.  As I said, I've had relatively minor bleeds.  On other occasions at the same counts, I've had no bleeding signs at all.  That unpredictability is a common experience for many with ITP.  So in my opinion, low platelets alone are no guarantee of  a fatal bleed.  

Appreciate your reply and the information you are shared—ITP is not to be taken lightly and your experiences bear witness to that. Just to clarify, we fully support my MILs  decision to stop her treatments. The intention of this post was to gather information in preparation for whatever is coming next. 

midwest
"So in my opinion, low platelets alone are no guarantee of  a fatal bleed." I completely agree.
ITP can be infuriating and unpredictable at times though.

amylynnet
"Our family is making progress in convincing my MIL to allow us to have a conversation with her doctors about all this: 
I hope I did not offend you with my previous comments. That was not my intention but the sentence above could be construed as coercion.
I spent over 45 years as a front line nurse and dealt with death more times than I care to remember.  So sad planning to lose a loved one but  believe me caring for someone and ensuring they have a well managed, pain free, dignified death can be just as satisfying as caring for  a patient and sending them home fit and well. 
Both my parents and  my husband  had untimely and undignified deaths, which has caused me tremendous  consternation over the years. 

My son was 21 months old when diagnosed with ITP with platelets at 11,000. He was given IVig twice and platelets went up to 23,000 but dropped the next day to the teens. He was then given prednisolone but dropped to 10,000 a couple days after finishing the medication. Hematology gave him IV WinRho and his number went up for one day and dropped again to 10,000. He was then given dexamethasone, which only increased platelets to around 35,000. 

It was at that point that I started giving him organic papaya leaf extract. Because he was not even 2 years old yet, I did not give him a high amount- I gave him 0.625 ml twice daily. We did not see a steady increase in his platelets until about a month later. And about 2 months after starting the papaya leaf extract, his platelets finally came into the normal range at 162,000. 

I’m not sure if it was the papaya leaf extract by itself that brought it up completely or if his body was just healing on its own but I feel like the papaya leaf did probably play a big role. It didn’t cause any side effects for him. I discussed with the pediatrician, and he said he thought it wouldn’t hurt to keep him on it for a couple months after platelets improved since none of the traditional treatment protocols seemed to help him.

He still gets some mild bruising on his legs but he is a very active 2 year old who falls regularly as he plays. 

Hello, 

I don’t know if any of you are still going through the ITP nightmare with your toddlers but I was just there with mine and can commiserate.

My son was 21 months old when diagnosed with ITP with platelets at 11,000. His pedi told us to take him to the ER after I noticed he had developed the petechiae rash and had bruising all over his body in just one day. The doctors basically tried every treatment they could think of with short lived improvement.

He was given IVig twice and platelets went up to 23,000 after 2nd dose but dropped the next day to the teens. He was then given prednisolone but dropped to 10,000 a couple days after finishing the medication. Hematology gave him IV WinRho and his number went up for one day and dropped again to 10,000. He was then given dexamethasone, which only increased platelets to around 35,000. 

I did not want him getting any more intense medications that did nothing but give him side effects. It was at that point that I started giving him organic papaya leaf extract (herbal goodness). Because he was not even 2 years old yet, I did not give him a high amount- I gave him 0.625 ml twice daily. We did not see a steady increase in his platelets until about a month later. And about 2 months after starting the papaya leaf extract, his platelets finally came into the normal range at 162,000. 

I’m not sure if it was the papaya leaf extract by itself that brought it up or if his body was just healing on its own after 4 months with low platelets, but I feel like the papaya leaf did probably play a big role. It didn’t cause any side effects for him. I discussed with the pediatrician, and he said he thought it wouldn’t hurt to keep him on it for a couple months after platelets improved since none of the traditional treatments seemed to help him.

He still gets some mild bruising on his legs but he is a very active 2 year old who falls regularly as he plays.
I am so thankful we have gotten to this stage and am ready to enjoy the fall season with my little guy. If anyone is in the middle of experiencing this with their child, please feel free to reach out.

Just to add to the Rituxan.  I thought something was off last Wednesday and had bruising at my insulin pump site on my arm.  Never bruise there.  Asked for bloodwork and I crashed to 21.  I was 2 weeks shy of 1 year remission.  Back on Prednisone and I hate this stuff.  Especially being diabetic on top of it  I have repeat labs tomorrow and scheduling to see doc.  I'm going to ask about Rituxan again since being off treatment for a year is better than always on something for me.  Just saying I would not hesitate to do it again.  I'm also making other changes in life (gym, eating better etc).  I feel that I may have crashed since I was sick about 6 weeks prior and wonder if the virus reactivated it.

sleev-les
So sorry to read that.
Over the 8 years I've had ITP my count always used to crash every time I had a viral infection even when I was taking treatments. 
Now it can't crash as it is rarely in double figures irrespective of meds. So far I've given up on Azathioprine, MMF, Romiplostin (twice) and Eltrombopag (twice) as I have lost response to them. 
About 6 yrs ago I  got kicked off the Fostamatinib trail after 6 months as failed to respond to it.
IVIg twice in last 8 months with no success and now Prednisolone failing to work at a dose under 20mg/day; a dose  I refuse point blank to take now. The side effects of high dose pred are truly unbearable. 
I am currently taking  5mg/day of Pred and on the PRN1008 trial, 6 weeks in and a count of 5 yesterday. Going to see my consultant Monday. I am prepared  to give it a bit longer but suspect I will end up getting kicked off this trial too. 

I'm not keen on Rituximab whilst Covid is still around but may well have to consider it soon. I have previously discussed it with haemo  where upon she told me it was highly unlikely to provide a permanent remission and that I would probably need top up doses at regular intervals.

I hope all goes well with appointment and that your counts go back up. 

Count was 5 yesterday. I am NOT increasing my Pred dose. 

Thanks for the response.  I would do this once a year to avoid the other drugs without hesitation.  I feel normal and more confident when I get a time of remission, even if just a year.  At least I know when to be on the lookout if that is the case.  I'm going to talk to the doc after I get my next results and push for it.  I can't fight blood sugar when on prednisone and deal with the other side effects.  I've been shaking all day today.  Its crazy and for some reason this time I can't sleep at night.  Wasn't like that before.  

Oh I understand that. I never sleep on Pred above 10mg. I am simultaneously hypermanic, completely exhausted and foul to everyone.
It must be a nightmare for you having type 1 diabetes  too. I've been on the wretched stuff for over 8 years now. I get my HbA1c done every 4 months. Thankfully it has remained within acceptable parameters throughout. 
Fingers crossed you are soon off it again.

Oh I'm really sorry mrsb - how low are you on the pred now?   Will this disqualify you to continue the trial??
I'm sending hugs and good thoughts your way!!

Hi Melanie
I'm back down to 5mg Pred a day and have to stay there for the duration of the trial which in theory is another 18 weeks. 
So far there has been no mention of kicking me off the trial, but have been summoned to see consultant on Monday. 

Me too.  I just had an A1C done and it was 5.9.  But dealing with the ITP and also diabetic retinopathy makes for a lot of doctors appointments.  Definitely focusing on better eating and gym again.  I'm down 8 pounds so far and goal will be 40ish in total to lose.  Hoping that helps, but time and patience will tell. 

Aw, mrsb, that sucks that you have to stay on the pred for the rest of the trial.  Hopefully you won't be kicked out of it!

Cindy
One of the conditions of the trial was that I had to stay on the same dose of Pred I was on at the start for the duration. I'm allowed extra  as a rescue remedy but cannot go below 5mg. 

Oh, ok, I understand now.  I guess I didn't realize that was part of the conditions for you to get into the trial.

Is your next count when you see the consultant Monday?  Hoping for a decent count for you mrsb!!

My heart goes out to you Christine on the passing of your husband.  Dementia is a terrible thing, I'm sorry he & you had to deal with that.

I was saddened to learn of the passing of Queen Elizabeth - rest in peace dear lady.

Hi, I have had ITP since 2005 and have been treated with prednisone and rituxan. I just relapsed after a 4 year remission. My platelets are 16 right now. I have a new hematologist and she is treating me with high dose dexamethasone.  I just wanted advice on managing side effects or any info from people who have used this protocol.   Also I have evans syndrome but it is only platelets afffected this time.

Yes Mel I will get a count on Monday 

It's going to be very strange. The majority of the nation have known no other monarch. 

Good luck on Monday!  Hoping for decent counts.