Be a part of the ITP community and stay informed.
Login to your account or REGISTER.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
Forgot your password? Forgot your username? Create an account
Forum
Parents of Children with ITP
Newly Diagnosed
11 Years Old Son Just Diagnosed with ITP

TOPIC:

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #64956

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
Hmm, milk should just reduce the absorbency, but I don’t think it would cause a stomachache. Since milk is mostly water, my guess is that the doxy dissolved just fine in it. Glad he is better now.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #64963

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1899
  • Karma: 7
  • Thank you received: 546
It is ok to take it with milk . From the SPC data sheet "If gastric irritation occurs, it is recommended that Doxycycline Capsules be given with food or milk. Studies indicate that the absorption of doxycycline is not notably influenced by simultaneous ingestion of food or milk"
The following user(s) said Thank You: th8899

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #64994

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Today we did a follow up at hemo office and unfortunately my son's platelet count crashed again to 11k. Also his blood test confirmed Lyme infection. He has been on Doxycycline for a week now. Our hemo will do another round of ivig on Wed. He said if count does not go up by Friday. He will admit us into hospital again. So frustrating. Now with ongoing Lyme disease, what other options do we have? Definitely I do not want to do Rituxan.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #64995

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
AFAIK, he could recover at any time. Is Promacta or Nplate not an option? That's the normal no IVIG and no steroid response safe treatment.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #64996

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Thanks Hal, I will certainly bring Promacta/Nplate up on Friday with our hemo. I won't let him do Rituxan with ongoing Lyme disease.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #64997

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
You may have already seen this but just in case:

www.pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/8157-itp-and-lyme-disease.html
The following user(s) said Thank You: th8899

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65002

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Today his count is down to 6K again. We are back to Children's National Outpatient Center for another round of ivig. However, without knowing, they gave my son some steroid through IV before IVIG. That makes me worried, since my son has Lyme and is on Doxycycline right now. Does steroid weak your immune system? I asked nurse and she said it is in doctor's order and steroid should not affect Lyme treatment much. Is that really fine?

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65006

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2366
Yes, steroids can lower the immune system but that is mostly after long-term use. I don't know how it would affect the Lyme's.
The following user(s) said Thank You: th8899

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65019

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Two days after third round of IVIG (1 single dose), no impact on his platelet at all. It is at 2K. This is exactly same as first round of IVIG. Our hemo is out of country right now. He left a note with his NP, which said if IVIG is not working, just admit us back into hospital and start Rituximab. I talked NP out of this and asked her to contact other hemo at Children's Hospital. Luckily hemo on call today has a different view on the treatment. He is admitting us into hospital today and start with another dose of IVIG along with steroid. If that not working, he wants to try TPO first. I talked with him about his Lyme disease treatment. He said since my son is already on Doxycycline for 12 days and right now treating low platelet is much more important. He think using of steroid right now should have minimum impact on his Lyme treatment. Keep my finger crossed!

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65021

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
Not sure how the Lyme thing is going to fit in here, but regardless, a TPO sure sounds good from a risk perspective to me. If Lyme is a gating condition for recovery, and not just a trigger, Rituxan actually sounds like a useless idea.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65022

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19

Not sure how the Lyme thing is going to fit in here, but regardless, a TPO sure sounds good from a risk perspective to me. If Lyme is a gating condition for recovery, Rituxan actually sounds like a useless idea.


Hal, I totally agreed. Our hemo seems really like Rituxan. He actually wants us to do Rituxan first week after failed IVIG and steroid. He insisted that my son's platelet destruction is too high and TPO won't help. But I am not sure how he could be sure it is a destruction issue not a production issue.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65023

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245
In the doctor's defense, Lyme could well be that way. Don't know. Dealing with a child may be significant as well. On the other hand, there are plenty of examples here on PDSA of adults who start with a flat line IVIG response, and who may start out on a higher TPO dose, but end up in full remission. It's really odd and non intuitive.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65024

  • mrsb04
  • Offline
  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
  • Posts: 1899
  • Karma: 7
  • Thank you received: 546
th8899 wrote :- I am not sure how he could be sure it is a destruction issue not a production issue.

I completely agree. He cannot be sure. I would definitely go for a TPO if he were my son. Personal experience would make me opt for Promacta first. It suits me. Wish I'd been given it a lot earlier

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65026

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2366
I agree with the others. If it were just a destruction problem, he would probably have better responses to IVIG and steroids. Rituxan may not even work and since it can take so long to kick in (4 to 12 weeks), it's not ideal for this situation. The TPO's have a better success rate and can work faster.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65037

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Quick update. My son had one dose of IVIG last night and a second one this afternoon along with 100mg per day oral prednisone. They just ordered a CBC and his count is only up from 2K to 10K. He still have a lot of petechiae on the body. But petechiae in his mouth is healing. They will let us go home and follow up on Monday at clinic. Son is little upset, we try to keep his spirits high.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65040

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2366
Poor kid. I'm sure he's frustrated by the whole thing.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65041

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
It is definitely hard on him. He is turning 12 in two weeks. He was asking "why me? I did not do anything wrong!" Actually so far he handled whole thing much better than we expected. So proud of him. By the way, on our way home from Children's National, I let him pick 6 numbers for me. Are we gonna hit same odds with that 1.6 billion dollars? :woohoo:

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65044

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Now I fully understand why everyone call ITP roller coaster. Looks like my son really need IVIG and Prednisone at the same time to have good response. 2 days after IVIG and Prednisone, his count jump from 2k to 150k. This time our hemo agreed to taper Prednisone instead of stopping it cold turkey. I just ordered Papaya leaf extract from Amazon as everyone suggested. Hopefully we could keep the count at a safe level longer this time.
The following user(s) said Thank You: maria3132

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65048

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
I have a question and not sure if anyone could provide me some feedback? I just noticed that since my son diagnosed with ITP, his red blood cell count is trending downwards. It was in the normal range. However last two test, RBC is already below normal. The last one is only 3.15 which is well below normal. Doctors never mentioned this to us. Is this something we should concern? Thanks!

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65068

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
th8899, I'm so glad your son eventually responded to the prednisone (and IVIG?) and counts went up to 150. We had a good experience with papaya, but it's not proven except in Dengue infection. Having said that, given that Lyme is a suspect in your son's case, I'd also be inclined to try it. I hope it's helpful to your son.

On the red blood cells, you should definitely ask your hemo. My son had elevated neutrophils (a type of white blood cells) and had a few other random readings that were off (his PTT/aPTT was prolonged, for example), but red blood cells were ok.

Have they tested him for clotting factors or IgG/IgM/IgA levels?

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65070

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Maria, his count actually went up to 537 after 5 days. His RBC and hemoglobin are also slowly recovering. My hemo thinks it is a side effect from IVIG. Keep my finger crossed. Hopefully it is not Evans. We are taking our son to see an infectious disease specialist to check out co-infections.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 1 month ago #65071

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
537, whoa! Those high counts can be tricky too, but even temporary spikes can give some relief and even a few days when life is back to normal mean a lot in terms of psychological well being. I hope your son is in better spirits. I am glad you are continuing to investigate. Keep us posted!

PS A colleague who suffered from hematological disorders as a child recommended taking our son to Sloan Kettering in NY or at least Johns Hopkins in Baltimore, if the situation seemed more complicated than acute ITP. If things don't continue to improve, we will make the trip. I just wanted to mention these centers to you as they are apparently among the very top for pediatric hematology in the world.
The following user(s) said Thank You: th8899

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 3 weeks ago #65122

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Just a quick update. Our hemo lowered Prednisone to 60mg per day after seeing platelet count 537. A week after that, my son's platelet count was at 263. Hemo lowered Prednisone again to 20mg per day. Now 3 days after 20mg Prednisone, I noticed that petechiae is coming back!! Can platelet count really drop that quick? I also started him on Papaya Leaf extract 3 days ago and hopefully that could help a little. By the way, his Hemoglobin is back to normal now at 12, looks like it could be the side effect from IVIG. Our hemo also very against the idea to test for Lyme co-infections, he insisted that one course of Doxycycline should already solved Lyme issue. But anyway, I will try to find a pediatric infectious disease specialist (my last appointment got cancelled, since the specialist I contacted won't treat anyone under 18).

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 3 weeks ago #65133

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2366
Yes, a platelet count can drop that fast, especially when the steroid taper is that big. He should not have tapered him from 60 to 20. 50 or 40 mg's would have been more appropriate. Ugh...these doctors!

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 3 weeks ago #65135

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Exactly, first time he stopped 80mg per day Prednisone cold turkey after 6 days and my son's count was crashed from 150K to 11K within a week. This time I questioned about tapering from 60mg to 20mg. He insisted that with a count 263, we could certainly afford to taper down to 20mg. The good thing is this time his petechiae is not widespreading and coming out slowly (he was covered by petechiae within 1-2 days last time). This Friday we are at our 6 weeks mark. If count is still below 10k, should we continue to try IVIG and Prednisone or just try TPO now? Any suggestion? Thanks.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 3 weeks ago #65138

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2366
Ugh. I said it again. You'd think that if counts went from 537 to 263 after only a 10 mg taper, he'd see that only 10 mg's less caused a huge drop in counts. Yes, the count of 263 was still respectable, but you kind of want to keep it there so a big taper is not the way to go.

IVIG and Prednisone might be a good option for a while but not the way this doctor keeps messing with the doses. It's a horrible drug for a boy his age so I wouldn't want to keep raising and lowering his dosage like that. If your doctor is open to TPO's it wouldn't hurt to discuss it, but hopefully he can dose those better. Some doctors don't do it right and keep chasing the counts instead of allowing the patient to just stabilize.
The following user(s) said Thank You: th8899

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 3 weeks ago #65149

  • th8899
  • Offline
  • Posts: 93
  • Thank you received: 19
Today we have our weekly follow up with our hemo. As expected, my son's platelet count drop back to 4K. Interestingly, this time he has a lot less petechiae comparing to last two times when his count was below 5K. Our hemo admitted that maybe he tapered Prednisone too fast. He decided to give my son another single dose of IVIG and increase the Prednisone back to 40mg per day. At the same time, he is filing paperwork with my insurance to prescribe Promacta. He is saying that he currently has 7 children on Promacta. So he is very familiar with dosing it. By the way, my son's hemoglobin is back to normal. His DAT test was positive. But my hemo is confident that it is not Evans and is still acute ITP. He said large doses of IVIG cause his RBC destruction. DAT is only positive for IgG and not any other antibody.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 3 weeks ago #65155

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2366
Good luck! I hope Promacta works well for him. I hope the Dr is familiar with dosing it...time will tell.
The following user(s) said Thank You: th8899

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 2 weeks ago #65162

  • maria3132
  • Offline
  • Posts: 229
  • Karma: 4
  • Thank you received: 41
TH8899, sorry to see your son's counts still going up and down, however, while reading the thread, one does get the sense that it's sloooowly stabilizing, in that the time between crashes is prolonging (with therapy). I agree with Sandy about prednisone at his age - I would be very careful and insist on slow tapers, if you continue to use it. Great to hear the hemoglobin is back to normal.

I will stay tuned for the news on the counts and Promacta.

Please Log in or Create an account to join the conversation.

11 Years Old Son Just Diagnosed with ITP 3 years 2 weeks ago #65169

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 245

... Interestingly, this time he has a lot less petechiae comparing to last two times when his count was below 5K. Our hemo admitted that maybe he tapered Prednisone too fast...

Was he still on a small amount of Pred, or, had just stopped it and had a little bit still in his system? That is, Pred reduced the amount of petechiae?

... He decided to give my son another single dose of IVIG and increase the Prednisone back to 40mg per day. At the same time, he is filing paperwork with my insurance to prescribe Promacta...

Excellent news. Love that Promacta.
Based on adults with row 2 response, an overlap of Promacta and Pred might be better. But, the way the doc cold turkey's Pred, or tapers quickly, I doubt an overlap will ever occur.

Please Log in or Create an account to join the conversation.
Moderators: jaycharness
Forum
Parents of Children with ITP
Newly Diagnosed
11 Years Old Son Just Diagnosed with ITP

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo