Frustrated!!!- need help and advice

Hello everyone,

I am a frustrated mom of six and half years old beautiful , vibrant girl who was diagnosed with ITP last year September (2014 ) with platelet count of 5k. I still can't forget that night ... Everything changed for me , my family and of course her. Since then I have been reading all the articles , stories on this platform and always wanted to write which I am doing today.

We started with ivig which did take her counts up for a while but by the time it was week 4 it used to crash down to 12 k or something near it. She also has nose bleeding problem especially when she has cold and if her numbers are low that time then it gets bad. So after 5 rounds of Ivig in the last 1 year and 3 months and after trying steroids for a week which didn't do any good we were suggested using n-plate . Which we started around May( 2015) and are still continuing with it. Started with the lowest dose and now are on the highest dose for her age. The bright side - seems that nplate is working and has kept her counts above 100k for 6 weeks now... But today I see a lot of petechia coming in along with a bruise here and there...which is a indication that the count has again gone low.

She is a very brave kid who has not been complaining at all about her weekly blood draws and the nplate injections. It is a pain seeing her go through this. Will this ever get better. Are we doing the right thing? Is there anything else I should try? We will be going bor the weekly blood draw again tomorrow. Keeping my fingers crossed that is has not gone that low again.

Will look forward to any kind of advice , suggestions!!

Hello and welcome. I'm sorry that your daughter is going through this.

I know that ITP is frustrating, but it is what it is. You are doing all that you can do, there isn't anything that would make it any easier. Many doctors do not even treat children, so that is an option but you'd have to be comfortable with that.

I wouldn't worry about the bruises and petechiae just yet. N-Plate is known to only last about 6 or 7 days and then counts usually fall again, so the day or two before the next injection can be like that. Hopefully she will rebound again with the next shot.

Life will become normal again. Most children eventually remit on their own with or without treatment, and N-Plate has been known to induce remissions. It can all take time though. It can be nerve-wracking at first, but most get used to it. If your daughter is accepting all of this with courage, you can too. It sounds as if she is a tough little girl. You will both get through this!

Thank you Sandi!! It is always so nice to see your positive approach it did bring a smile on my face. I have been reading all your posts and it is so encouraging

The count came in as 13 k it was 239k last time...can it just drop so low...it has been pretty consistent with nplate the current dose. She has no cold or anything.

Yes, that can happen once in a while for no apparent reason. Did she get another injection?

Yes, she did. They did the blood draw again as they didn't believe that it can suddenly go that low and the count came in as 10k. We were asked to either do IVIG along with nplate or just give the nplate dose as we were doing and check the count back on Monday again.

So we went with the second option. Keeping my hopes that it goes up for her!!

Just wanted to vent it out... So when we were at the hospital on Dec 14th my daughters count dropped further to 7 k so we had to take her for Ivig which took her counts up to 948 k first week and then second week after Ivig her count is down to 165 k. How can it just jump so much!!! Will have to start with the nplate again tomorrow. I was happy thinking that her counts are going up because in the past whenever we did Ivig for her her counts went up only till 485 k or something. But seems there is no connection ...I guess the body is doing what it has been doing! Can the counts jump so much?

I really don't know about children - but IVIg is given for a boast. My hematologist years ago told me she never had a patients go into remission from IVIg. That 948k was pretty high. Once after the flu [real flu] my count went up to 401k and was down to 79k in days.

The only thing certain about ITP is there is nothing certain about it.

It breaks my heart your daughter is having to deal with this, I have a granddaughter her age. I hope the n-plate works - keep us posted, I'll be checking for reports.

Counts jump around like that when treatments are given and wear off. IVIG usually doesn't last long. Be careful with the huge jumps in counts, especially while using N-Plate. That can cause more problems than low counts.

I hope they can get her stable soon.

We got the blood work done and her counts came in as 235k. The doctor says that he will keep giving the present dose of nplate and will stop after the count goes over 400k two consecutive weeks then they will start reducing the dose of nplate. So keeping my fingers crossed that it does work for her.

May I ask why he wants to get her to 400k?

At present she is getting the highest dose. They can't go beyond this dose for children. ... So that is what the "- Dr. Said that at the present dose if the count goes beyond 400 k two consecutive week they will start reducing it."

Thanks I see. And you really don't want her count to go up to 400k right?

If the platelet count is < 50 x 109/L, increase the dose by 1 mcg/kg.
If platelet count is > 200 x 109/L for 2 consecutive weeks, reduce the dose by 1 mcg/kg.
If platelet count is > 400 x 109/L, do not dose. Continue to assess the platelet count weekly. After the platelet count has fallen to < 200 x 109/L, resume Nplate at a dose reduced by 1 mcg/kg.

These are the Adult guidelines. I'm not sure about the dosing levels for children

Some questions to ask -
1.- how long is it safe to use Nplate for kids? It will be an year for us this May. She has been getting the highest dose 230 mcg. It seems to be working for her but we have not started reducing the amount yet. As as her counts come all over the place.

2. Should we switch to promacta or continue with nplate?

3. Will it be safe to try some Ayurvedic or Chinese herb along with the current treatment?

Looking forward to any kind of input and suggestions.

Thanks~

1. I don't think there are any real studies about the length of time that N-Plate is considered to be safe. It hasn't been given to children long enough to make any conclusions. At present, it appears to be safe, but that is not based on years and years of studies. Maybe in 20 to 30 years they will know more about long-term side effects.

2. I'm not sure if there would be any benefit switching to Promacta other than it might give her more stable counts (or not). I don't know if I'd be happy with my child receiving the highest dose of N-Plate for a long period of time. Hoe often do her counts drop and how low does she get?

3. I'd ask your doctor about the alternative treatments and do some research on your own. Sometimes alternative treatments can interfere with medications and make them less or more effective.

Thank you for your quick reply Sandi.

Whenever she gets ivig it takes her counts up and starts crashing and gets as low as 7k. Hence we switched to nplate which started with the minimum dose and now the highest dose as the low dose was not working so it was increased weekly.

While starting nplate the doctor said that if her count is over 400k for two consecutive week then they wont give her the nplate the following week or till the time it drops below 400k. And if it stays more that 250k for two consecutive week then they will reduce the dose by 1 mcg. But it never happens if one week it reaches 377k the next week it drops down to 165 k so she has to be given the same dose every week.

I am so confused I don't know what should I do now?

Well, you could just keep doing what you're doing. I just don't understand why they are keeping her on the highest dose though since her counts always seem to be in the normal range. The counts don't have to be maintained that high. Usually, they go with the lowest possible dose to keep counts in a safe range (around 50k).

I know you are frustrated but all in all, your daughter is responsive to treatment and doesn't seem to be having problems with it. That is usually the goal. What are you having trouble with?

Low dose was not working for her. I am just concerned about the high dose as I don't know how long will have to do this!!!

Hi,

I was just wondering if you had any side effects on taking NPlate? Is this the same as Eltrombopag? My son is 9 1/2 and his platelets are 2k but no wet bleeding. He was on steroids for 5 months with little to no effect on platelet count (except that when he was on steroids, his petechiae and purpura was not present...now it's all over his body).

I hope your daughter gets well soon. I know it's a hard journey and I always pray to God for healing...and thanking Him that we have an uneventful normal day...funny how it sounds.

Take Care!

Aubrey

Hi,

We have been doing weekly nplate injection for 8 months now. Started with the lowest dose and now we are on the highest dose for kids. Have not seen any side effects so far. And it also seems to be working for my daughter who will be 7 this April.

The doctor has just given us an option if we want to switch to Promacta( Eltrombopag) as it will be a pill which she will have to take once a day. But I am not sure if I would like to switch or should I wait it out? Nplate is working for her as of now. We have done 6 ivigs in the past and also tried steroids for a week which took her platelets up for a week and then crashed to 5 k again. Hence we decided to switch to nplate.

Wishing more platelets for your son as well. Yes, I know it is difficult journey and we are taking one day at a time. Hope and pray this all ends for our kids soon.

Best
Shubh

Hi.

I have a 15 yr old daughter with chronic ITP (had acute ITP at ages 3 and 6, then ITP again at 10 and since, so she is chronic).

She was on Promacta, and that worked for a while, then stopped. She is now on Nplate and it seems to be working.

My thought would be that if Nplate is working, stick with it. If it stops working, you can try Promacta. There are pros and cons to each, but for me, I suggest sticking with what works!

God bless!

Shub:

You're talking about high dose vs low dose. What about an in-between dose? Talk to the doctor about going down a bit and see how she does. Maybe if you got the dose down some you'd feel better bout long term side effects.

You can only do what you think is best and I believe that you are. I know it must be hard to subject your child to these drugs. Do what your gut tells you; you can't do any better than that.

Sandi,

I have the appointment coming up next month I will talk to the doctor about this.

Just wanted to ask if this happens- On 4th december her counts came down to 7k hence she was given Ivig to give her counts a boost . It went upto 948 k and then started to crash so when she was down to 165 k the following week she was again given her nplate dose which took the count as below:

1/06/2016- 265k ( given the nplate 10 mcg)
1/13/2016- 965k ( no nplate given)
1/20/2016- 815k ( no nplate given)
1/27/2016- 18k (given the same dose of nplate)

I am just so confused how can the counts drop so drastically? She just had a cold with runny nose and cough? can that take the platelet so high?

I think the combination of IVIG and N-Plate probably caused her counts to go up that high and when they wore off, her counts dropped. The problem I see is that she gets over-treated when counts are down and the counts go way up, then she gets no treatment at all and they crash. Then they go back to over-treating and the whole thing starts over again. She needs more consistency because right now, all they are doing is chasing counts around. This has happened to others and the cycle never ends.

Maybe she would be better off switching to Promacta, but the transition would have to be handled right, kind of like balancing a clutch and the gas pedal. Fast drops and fast spikes can cause more problems than consistent low counts.

A cold can affect counts either way so it's hard to say if that played a part in it.

I echo Sandi's wise comments. It is impossible to know what is happening if there is more than one treatment being used. You have to sit with the uncomfortable and frightening low counts and say the course of treatment. Perhaps the same NPlate shot each week for a month and no other IVIG or other treatments and see what happens. From others on the list, it seems that sometimes the NPlate impact is 2 weeks after the treatment so reacting to the current number might not be very helpful. I know how scary and frustrating.... the whole process can be!

Thanks for your input Sandi and Emily.I really appreciate it. It gets a little scary sitting on low numbers. But will see how it goes this time.