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TOPIC: Teenage son with ITP (and maybe lupus)

Teenage son with ITP (and maybe lupus) 2 months 1 week ago #69195

  • smallhouse5
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My son, now 16, was diagnosed with ITP last July, after I noticed a lot of bruising (mostly on his legs) and petechiae. Our family doctor initially told us there was nothing wrong with him (after just a visual examination and questions about other symptoms), but thankfully ordered bloodwork, “To put Mom’s mind at ease.” His platelets have, for the most part, been at either 4 or 1 for the majority of the year.

We have tried various treatments, including prednisone, IVIG, Sirolimus, with not great results. He is now being watched for symptoms of Lupus, as he has tested positive for the antibody that is an indicator of Lupus, but so far, aside from the ITP, he has no symptoms. However, as they suspect it could be developing, we’re now trying Plaquenil. Since February, his platelets have gone up and down, from 15 to 23, then down to 12, then 17, and now at 12 again. At the same time that he started Plaquenil, I also started him on a number of vitamins and supplements, including a multivitamin, C, D, alfalfa, and two probiotics, but he decided to stop taking them because he didn’t think they were working (and our haematologist isn’t supportive of natural approaches either).

The doctor has decided the Plaquenil isn’t working, but is letting us stay on that until July. At that time, if there is no significant improvement, he wants us to try Eltrombopag; if that doesn’t work, the next option is splenectomy.

I’ve just ordered some papaya leaf tea for my son to try.

It’s been very difficult to persuade my son that there is actually something seriously wrong with him. I don’t know if he’s in denial, or what, but part of it is that he’s been very fortunate in his experience with ITP - he doesn’t get blood blisters in his mouth, he doesn’t have nosebleeds, or cuts that refuse to stop bleeding. A few bruises aren’t enough for him to believe that he really does have to try everything possible to get his platelets back up, and he’s convinced that it’s fine for him to go back to his regular risky activities, like playing soccer, snowboarding, and mountain-biking, etc.

I’d love to hear from other parents of teens, or from adults with ITP who maybe have had similar experiences.

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Teenage son with ITP (and maybe lupus) 2 months 1 week ago #69196

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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If your son is going to take Eltrombopag then he is either going to have to take it in the middle of the night or adhere to the dietary restrictions.
" Eltrombopag should be taken at least 2 hours before or 4 hours after antacids, dairy products, mineral supplements or any other products containing aluminum, calcium, iron, magnesium, selenium and zinc. It may be taken with food that contains very little or no calcium." see bodyandhealth.canada.com/drug/getdrug/revolade .
Little or no calcium = less than 50mg in the restriction period. 40mls of milk contains 50mg.
Over here in the UK, much to my annoyance, Avatrombpag is not licensed for ITP unless the patient has chronic liver disease and needs a safe platelet counter surgery.
I don't know about Canada but it would be worth you investigating as there are no dietary restrictions attached.
My haemo started me on Vitamin D very early on. It is worth researching it, there is a wealth of information on google scholarly articles. Here is one for starters www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/
Best of luck. I remember my boys at that age, I could willingly have strangled them on more than one occasion.

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Teenage son with ITP (and maybe lupus) 2 months 4 days ago #69227

  • smallhouse5
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Thanks mrsb. Our haemotologist didn't tell us anything about the dietary restrictions with Eltrombopag. I did read about that on another discussion post though, and my son says he is prepared to wake up in the middle of the night to take it. We'll see!

It's also helpful to know that your doc recommended taking vitamin D. I wish we had a doctor who had a more holistic approach. But maybe if I tell my son that other doctors do recommend vitamins, he'll be more willing to try it again.

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Teenage son with ITP (and maybe lupus) 2 months 4 days ago #69228

  • MelA
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I don't think vitamin D is a holistic approach - my understanding is that those of us with autoimmune disorders need vitamin D. A couple years ago I was tested and my D was below the normal range, I was put on a high dose of D3 once a week for a while & tested again, it was in the low normal range & I was told to stop the high dose & take D3 at 2000 IU a day (not telling you to have your son take it - or to take that dose - he really should have blood work to see if in fact he does need D).

I was told not to take a multi-vitamin with E in it - and lately I was told by the eye doctor to take a vitamin that had a lot of E in it and my hematologist nixed it because of the E. Vitamin E reduces blood clotting.

Your son is at the age of being invincible ;) All go through that stage - our younger son was diagnosed with mono in high school and continued his summer job which he shouldn't have done as the risk was high for a fall & his spleen very enlarged. Has your son's hematologist told him to lay off some activities?

It is hard enough for an adult to come to terms with ITP (I've had it since 1989 so now it is just a part of me) but for a teen or a child it has to be harder. Sorry your son (and you) have to deal with this. The best to you both - keep us posted!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Teenage son with ITP (and maybe lupus) 2 months 3 days ago #69229

  • smallhouse5
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Thanks. I guess my use of the term "holistic" wasn't quite accurate. I was meaning more that our doctor is only concerned with drugs/medical interventions, and doesn't give any importance to nutrition. I think that everything we put in our bodies has the potential to have an impact on our health.

My son has been told not to participate in contact sports or activities that put him at increased risk for injury, especially head injury. So he stopped with soccer and basketball, and wasn't allowed to go snowboarding this winter. But now he's been mountain biking with his friends, and had a big wipeout going off a jump, in which he his his head on the ground. Thankfully he did wear a helmet, even though his friends didn't. (He had video evidence, or I wouldn't have believed him!)

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Teenage son with ITP (and maybe lupus) 2 months 3 days ago #69230

  • MelA
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Only thing I've been told about nutrition was no vitamin E in a multi-vitamin - no large amounts of vitamin E.
I do feel that if we [or those without ITP] are going to add a supplement that is more than required daily amount that they first discuss with their doctor - or ask the doctor for a blood test to determine if more is needed. Too much of something can be a bad thing.

I had to smile when reading about your son and his mountain bike - yes, invincible ;) Snowboarding, our older son was a boarder, younger a skier - older a skate boarder, younger a mountain biker and raced - so if you are turning gray I know where those gray hairs came from (I do prefer to call them sparkles). Maybe your son will skip the jumps while mountain biking after this fall! Thank heaven he was smart and had his helmet on - good for him!!

What I find interesting is my ex-brother-in-law, a non-ITPer, had a brain bleed from a fall and hitting his head on the tile floor of his kitchen, that caused a brain bleed that went on until he finally went to the doctor a week or so later - I fell down basement stairs & hit my head on a step with metal edging and did not have a brain bleed - 2 years ago I missed a curb and fell into a rock planter breaking my shoulder and hitting my head on who knows what causing intense bleeding running down my head & face and required 3 staples to shut the wound and I did not have a brain bleed (the ED where I was taken did a CT due to my ITP). My count with the head wound was decent, can't recall 80k or 90k?, so that was good. Guess what I'm trying to say is - who knows what will happen.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Teenage son with ITP (and maybe lupus) 2 months 3 days ago #69231

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
  • Posts: 1567
  • Karma: 7
  • Thank you received: 411
Vitamin E can reduce the platelets role in blood clotting.
It would definitely be worth getting his Vitamin D level checked however
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Teenage son with ITP (and maybe lupus) 2 months 2 days ago #69232

  • MelA
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It would be good to have the D level checked since those with autoimmune disorders can be low.
Yeah, that's what I mentioned Anne about the E - I'd get broken blood vessels on my palms and back of fingers and my doctor said stop the multi with E in it, I did and that stopped.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Teenage son with ITP (and maybe lupus) 1 month 3 weeks ago #69258

  • smallhouse5
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Thanks for the advice - I have to call our nurse today, so I'll ask if we can get a requisition to check vitamin D with his next bloodwork.

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