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Yesterday 21:49
  • Eagann
  • Eagann
My 3yo son has has 5 infusions in the past 13 months. I am wondering if this is normal or overly frequent? Any advice on other treatment options would be greatly appreciated. Thank you!
Yesterday 09:33
  • CindyL
  • CindyL
Yeah, I know the thyroid can affect everything. My thyroid numbers have been good lately, so this is rather concerning.  Of course, I am getting older.  But mum had heart issues and had the stroke, so hence the stress test.  Funny I should read this now.  I was literally just getting ready to post that I finally got my call about it this morning!  Next Wednesday, June 1st.  I said to Cathy yesterday on our walk that I hope I don't have to wait 6 months from the time the specialist orders it.  I'll be so glad when it's done!
With the cost of food these days, who can eat healthy?   We don't eat a lot of junk food or sweets.  And I don't eat as much as I used to.  At our last doctor's appointment I weighed myself and I'm under 200 lbs for the first time in a long time!  Hopefully these pills will help.
23 May 2022 15:49
  • MelA
  • MelA
I can understand avoiding the blood draws unless absolutely necessary - it is good you are in tune with his symptoms and can tell when his count drops.  His did get very low didn't they.  I wish I had an answer for you but I really don't know anything about ITP in children, just in adults like me.   I am hoping someone in the know will see your post and reply!! My thoughts are with you!!
23 May 2022 15:43
  • MelA
  • MelA
Cindy I would think thyroid could cause heart problems if the thyroid condition wasn't being taken care of - hypO slows things down and hypER kicks things into high gear, the happy medium of an in-range TSH is what is needed.   Hope by now your stress test has been scheduled!!

Like MrsB I too take a statin.  Since I take a bp med before bed I just take it then.   MrsB a good friend of ours has bad cholesterol and triglycerides and he cannot get either to a good # in spite of eating properly (boring in other words :) ) and exercising and doing everything he is supposed to do.  Doctor told him bad genes.  
23 May 2022 12:37
  • Octavie
  • Octavie
I want to thank the author, this is really interesting. I want to recommend a site where you can find a lot of interesting things  most-bet.az
23 May 2022 00:47
  • Eagann
  • Eagann
Thank you for replying! His counts have been in the 2-7 range when he has had infusions (5 times in the last year). We avoid blood draws now because we are very in tune with his symptoms and know when he drops below 10,000 just by looking at him, so we don’t have a consistent count. But I believe he hovers around 40-60 on a good day.
23 May 2022 00:36
  • MelA
  • MelA
Hi!
So sorry to hear your son has ITP.   It may help if you could add what your son's count is and does he have symptoms of low platelets.  
I hope you can get his counts up to a good count!  Keep us posted!
21 May 2022 04:49
  • Eagann
  • Eagann
Hello! My son, age 3, was diagnosed with ITP just over a year ago. Most cases resolve within a few months in children, but his has persisted. I just wanted to recommend the use of lidocaine ointment prior to blood draws to ease discomfort. I didn’t know about it during our first draw, but it has made my son much more comfortable. Best of luck to you.
Category: Newly Diagnosed
21 May 2022 04:43
  • Eagann
  • Eagann
Hello! My son has been suffering with ITP since he turned 2. He is now 3 and has been hospitalized 5 times for IVIG infusions. Our hematology team is exploring other treatment options. I was wondering if anyone would be willing to share what has worked best for him/her and what, if any, side effects he/she has experienced or been made aware of. Just trying to get a good smattering of options to discuss with the doctors. Thank you in advance!
15 May 2022 09:39
  • CindyL
  • CindyL
Mrsb, my sister works in a doctors office and she said the same thing!  We are wondering about that too.  But the wheels are in motion now, so hopefully it won't be too long. The number they had was technically my mum's.  She wouldn't use a cell phone, and when she moved in with us wanted to keep hers.  I thought we had let our docs office know that it was no longer in service because when we moved after mum went to the nursing home we let it go.  I guess not.  All fixed now, that's all the matters.
I'm on 10mgs.  I was hoping I wouldn't be on it long. I'll admit, we don't eat the healthiest.  But with the cost of food, we don't over do it, either.  We don't eat a lot of sweets or junk food.  If we have anything with salt added, I, we, don't add any extra.  The hardest part is remembering I have to take it!  I'm not used to taking anything at bedtime; that was what the pharmacist recommended.  I try to take it at the same time Steven takes his.  I'm also a big person.
I think I've been off the Pred since doing the Rituxan in 2011 and went into remission.
15 May 2022 04:21
  • mrsb04
  • mrsb04
Sorry to hear this Cindy, shame the stress test office didn't contact your doctor to inform him they couldn't get through to you.

I've just had to start on statins too. Was summoned to the surgery for my well person check and discovered my triglyceride levels are too high. Really annoyed as eat a very healthy diet. Had a long talk with the pharmacist at the surgery. He told me it was more than likely down to 8 years on prednisolone rather than my diet. When I asked if things would improve once I got off the wretched stuff (down to 2.5mg/day) he said no the damage was done I would be on statins forever. Oh joy. 

Hope things improve for you and you soon get stress test. 
13 May 2022 09:45
  • CindyL
  • CindyL
Mel, yeah, I'll have a recheck in about 6 weeks.  And now I am hyPO.  I've been dealing with thyroid issues for 3 docotor's worth now.  Long before my ITP.  For the longest time those numbers have been good.  Just a few minor nips and tucks.  This new high count isn't normal for me.  But then, if you ask Steven, he'd tell you I'm not normal! lol.
The cholesterol thing is new.  He's never mentioned anything about that before.
I did wonder if the thyroid issues could affect the breathing and heart problems.  Right now, just my MD is looking after all of it. And of course, mum's stroke is on my mind.  Asked doc a couple of visits ago, if her condition was hereditary.  He said it could.  He's really good.  Keeps on top of our health.  We see him every 5 weeks or so.
No call yet about the stress test or specialist visit.  He was going to mark the referral as urgent, so I'm hoping today I'll get that call.
Still gonna keep walking with my sister in the meantime, though!
12 May 2022 15:11
  • MelA
  • MelA
Cindy I'm so sorry!!   So you are very hypOthyroid right?  Will you test again in 6-8 weeks after decreasing synthroid - that's what I have to do with a dose change.     Great your stress test will be ordered soon!!   Hope you get good news!!!!!

PS - Just a thought - would the high thyroid numbers have anything to do with the cholesterol, breathing, etc?   Do you have an endocinologist or is your MD taking care of the thyroid issues?
12 May 2022 11:42
  • RR01
  • RR01
ohh, She has gone thru a lot of treatments :(  My platelets though low were quite stable in 40's until I received the Covid vaccine shots then they dropped significantly ( very low now). Please keep your spirit up there will be some option that will work out for her. Sometimes we just need to give the body some time I guess.. This ITP condition is like literally unpredictable :(
12 May 2022 10:04
  • CindyL
  • CindyL
Since my mom passed away last July, my sister and I have been walking the trails in our best park.  I started having breathing issues almost right away, so I mentioned it to my doctor.  He was going to order a stress test.  His first order went in back in November.  I'm still waiting to hear.  Meanwhile, we're still walking.  Still having issues. Still waiting to hear about the stress test.
The doctor is also having a bit of a hard time regulating my thyroid.  It's still too high.  I think I've had more blood tests in the last couple of months than I have since being in remission.
Yesterday, we had appointments to get the results of our latest tests.  Steven has his own issues.
Doc was just full of good news!  Not.  Thyroid is still high, drop one of my synthroid pills: cholesterol is high, now on Crestor (first one last night and today feeling icky)  and my platelets are a little high.  He wants to keep an eye on that.
Did find out why I haven't heard anything about my stress test (and appointment with the specialist); the office had sent the wrong phone number. That has now been corrected, so it shouldn't be too long before I hear about my stress test.  Fingers crossed.  This concern  about my breathing issues is because my mom had a stroke in 2013.  And there are times my heart feels like it is racing.
11 May 2022 12:56
  • raj369459
  • raj369459
Sorry, I should have given complete history. My daughter's ITP started in Jan 2020. Below is the chronological order of treatments:
Jan 2020: IVIG (She had negative reaction to this, so they stopped after 3 doses)
Feb 2020: Prednisone (She was not responding to the expectation of Hematologist with 35mg, so they stopped)
Mar 2020: IVIG, Prednisone, Promacta, Platelet transfusions
Apr 2020: 4 weeks of Rituximab, Promacta (Rituximab didn't have any effect on her platelets)
May 2020: Increased Promacta to 100 mg from 75 and Sirolimus
Jun 2020: Promacta 150 mg and Sirolimus
Jul 2020: Promacta 100 mg and Sirolimus
Aug 2020: 4 weeks of Rituximab, Promacta (Rituximab didn't have any effect on her platelets), Promacta 100mg, Sirolimus
Sep 2020 to Dec 2021: Promacta 75mg, Sirolimus. During this period, she didn't get any other treatment as the platelets were still fluctuating but no bleeding symptoms
Jan 2022 to Mar 2022: After COVID vaccine, her platelets dropped suddenly and they increased Sirolimus and Promacta to 100mg
Apr 2022: 4 weeks of Rituximab, Stopped Promacta, introduced NPlate 4mcg, Sirolimus, one dose of IVIG
May 2022: NPlate 3mcg (this is when her platelets dropped from 282K to 4K), Sirolimus
 
11 May 2022 11:32
  • RR01
  • RR01
Sorry to hear that Raj , did IvIG hold up her platelets for a while ? If yes can that be done a little more frequently? What does your hematologist suggest , I have heard people using a combination -promacta+prednisone or nPlate+prednisone . Your hematologist should be able to give you some options , splenectomy is again not guaranteed is what everyone says.. We will have to exhaust all options before you go for that
11 May 2022 11:26
  • RR01
  • RR01
VVeenM  
I was diagnosed in Oct 2019 . I came to know of my condition only when I went for a regular check up in India . My platelets were at 25000 range and I am sure they might have been much lower than that when I flew to India ( It is a 18 hour trip ) . Even now mine are only in the 20000 range but I am not paying too much attention to the numbers now . I just want to stay off any medication or treatment for a while, planning to try Promacta if my condition worsens or when there is absolutely no other option. 
11 May 2022 10:01
  • VVeenM
  • VVeenM
Thank you. I did the prednisone for nearly a year and it worked but had to go off. Then did 6 Rituxsin infusions. They worked for 5 months, then they dropped drastically.  I’m at 75 mg of Promacta now and hope it gets them to a level  I feel comfortable flying. Last week my count was 30k.
11 May 2022 09:52
  • VVeenM
  • VVeenM
Thank you, that’s great to hear. I’ve just been increased to 75 mg if Promacta. Last weeks count was 30k. Blood doc said flying shouldn’t be an issue unless counts were in single digits maybe. I read nothing online that said there was a connection with flying with low platelets and issues with change in cabin pressure resulting in bleeding events.
11 May 2022 02:34
  • mrsb04
  • mrsb04
I see from a previous post that she has tried Promacta but no mention of NPlate. Would that be an option?
10 May 2022 23:01
  • sohail009
  • sohail009
Thanks, do you have any personal experience with her in ITP treatment? I mean we both know in the market 100's of Homeopaths and Naturopath are there everyone is claiming yeah I can treat but they fail to do so.?
10 May 2022 19:04
  • raj369459
  • raj369459
Unfortunately, my daughter's platelets went down to 4,000 today. Does this mean Rituxan didn't work or stopped working? Not sure what to do to improve her platelets. The only option left is splenectomy, but in my opinion she is too young for that. Also, there is no guarantee splenectomy would increase her platelets as the efficacy rate is just 40% overall.  Please let me know if anybody has this situation and if you tried any other treatment. Thank you!
10 May 2022 14:45
  • cboggs
  • cboggs
Hi.  A 2016 at Harvard University and Massachusetts General Hospital found that low-level laser light treatments helped raise the number of platelets in mice with thrombocytopenia. The researchers think this effect was because the light treatments increased the production of ATP, a chemical source of cellular energy, which resulted in reducing oxidative stress. Does anyone in this group know of any further research on this topic, or the existence of a clinical study examining whether this approach works in humans with ITP? 
08 May 2022 16:22
  • mrsb04
  • mrsb04
I flew from UK to Australia and back. I asked my haemo what count I could fly at and she replied above 1. It was 21 when I flew back. I had no problems. 
07 May 2022 20:52
  • ronjsteele1
  • ronjsteele1
www.maryjoaloi.com

email: health@maryjoaloi.com

She is a homeopath that is familiar with treating ITP.
06 May 2022 18:15
  • MelA
  • MelA
Very good to hear your daughter's count is still good raj - that is wonderful!   I am sorry you needed to cancel your trip but as you said there is always next year.   
06 May 2022 18:07
  • MelA
  • MelA
I was diagnosed April/May 1989 with a count of 11k & dropping - in July 1989 we moved to Tokyo and of course that was an airline flight,  I was on 60mg of prednisone & a low count (sorry can't tell you the # as I gave all my charts and notes to my new hematologist since he has lots of knowledge of ITP and he loves blood) - while overseas we flew to Hong Kong (and later moved there), Singapore, Beijing, Thailand, Cairo, Rome, London, Bermuda & more and back to the States a few times.  To be honest I never considered what my count was when I got on a plane - they let me move/fly to Tokyo shortly after diagnosis & on 60mg of pred so I never gave any other flights a thought.  I had no issues due to the long flights.   At that time no one was wearing masks on planes, but if I were to fly now I would be wearing a mask.

What does your hematologist have to say - have you talked to him/her about flying?

Good luck
06 May 2022 13:53
  • VVeenM
  • VVeenM
I plan on flying  to FL soon. Has anyone had any experience to share on this? If you’ve flown, what were your platelet counts and did you have any issues?. Right now mine are around 30,000. I’m a little concerned because of the cabin pressure.
05 May 2022 17:02
  • raj369459
  • raj369459
Update on this week's CBC count: My daughter's platelets went up to 282K this week. Spoke to hematologist and she said although her platelets are normal, it's safe for her not to travel and that too internationally because of Rituxan. For now we decided not to travel with her and would plan next year. Thank you for all your suggestions!
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