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
  • Page:
  • 1

TOPIC:

Can't afford sons treatment! 5 years 2 months ago #60797

  • Evansmom1
  • Offline
  • Posts: 12
  • Thank you received: 1
My 12 year old son has been diagnosed a few months ago with ITP. He has remained covered with Petechiae and bruising. Biweekly platelets never above 30. Dr wants to give him IVIG but said (in front of my son)..."it's the best treatment for him but you can't afford it, your insurance doesn't cover it and it's $49,000". What? How does anyone afford that? Does anyone have any suggestions? I'm in Phoenix, is there another state, etc that's cheaper? Thank you in advanced!

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

Can't afford sons treatment! 5 years 2 months ago #60798

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
Hi. You said that your son is never above 30, but how low does he go and what is an average count for him? Usually, treatment above 30 isn't necessary so if he's close to that, he may not need it.

IVIG is a very temporary treatment, meaning that it usually only lasts a week or so for most people. It's a band-aid and a very expensive one at that. I wouldn't consider it the best treatment for him. There are other options, better ones even, but I don't know if your insurance would cover those either. If you feel that he really needs treated and want to do that, Prednisone is a cheap alternative. The side effects are not pleasant, but he wouldn't have to start with a high dose. Some people respond to a lower dose. All treatments have side effects which is why treatment isn't done until it's absolutely needed for low counts or bleeding symptoms. It could be used until you investigate other treatments that insurance might cover.

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

Can't afford sons treatment! 5 years 2 months ago #60800

  • Evansmom1
  • Offline
  • Posts: 12
  • Thank you received: 1
Thank you for your reply!! I'm so happy to read your advice! He has so far been staying between 28-30 which from what I see so far on this site is actually not bad :) I am glad you mentioned steroids, I was thinking that might be a good route. If he's not having spont bleeding (nose, etc), do you know if there are others that continue to take watch and see approach? Thank you again for helping me! I'm new to this so I'm one of the freaking out parents lol

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

Can't afford sons treatment! 5 years 2 months ago #60801

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
Counts around 28 to 30 are not bad and yes, there are many people who would watch and wait with those counts. Of course it also depends on symptoms and the activity level of your son. Some kids treat mainly so they can continue to play sports but if that is not an issue, he does not have to treat unless symptoms warrant it.

The doctor's comment was very unprofessional and I know it's upsetting, but try to take it with a grain of salt. Your son does not NEED IVIG and it's not like you are denying him a life-saving treatment because you can't afford it. That was a definite guilt trip if I ever saw one. There are other ways to go about this, like steroids. It might not be a bad idea to try a low dose if his counts get lower just to see if he responds. That would be good in a pinch if he really needed it.

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

Can't afford sons treatment! 5 years 2 months ago #60802

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 246
Evensmom, I recently came across this article and was intrigued by it.

m.asheducationbook.hematologylibrary.org/content/2013/1/276.full.pdf

Look for the paragraph (2nd page) that contains these two sentences.
"...
These downstream immune changes provide a rationale for the observation that children receiving IVIg at diagnosis were less likely to develop chronic ITP, suggesting that IVIg has a long-term immunomodulatory effect. Further studies are needed to confirm this finding and to determine the true benefit of this approach given that the majority of children do not require treatment upfront and the development of chronic ITP in children is uncommon.
..."

Few things about ITP are simple/straight forward. Perhaps the 'uncommon' part will be comforting...

About the insurance. I think if he starts bleeding (eg nose) he can get IVIG in the emergency room. As long as the emergency room is 'in network' most anything there is covered.

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

Can't afford sons treatment! 5 years 2 months ago #60803

  • Evansmom1
  • Offline
  • Posts: 12
  • Thank you received: 1
Sandi thank you for making me feel better and giving me hope! I had that "mom failure" feeling when I left the office that day. So I really appreciate your advice

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

Can't afford sons treatment! 5 years 2 months ago #60804

  • Evansmom1
  • Offline
  • Posts: 12
  • Thank you received: 1
Hal9000, Thank you for sharing, that was very informative! If I understood correctly, it may be true that treating more aggressively during early stages can help prevent the possibility of chronic ITP? Maybe that could be why his Dr is wanting IVIG treatment done sooner then later? And yes, very comforting reading about the "uncommon" statistics, as we are obviously praying this will resolve without any severe symptoms in the meantime. Thank you again!

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

Can't afford sons treatment! 5 years 2 months ago #60806

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
Some studies say that treating early can prevent chronic ITP and some studies say that it doesn't. Many children go into remission without any intervention and in the end, those children are better off because they didn't go through the drug toxicities. I don't know how those studies can be accurate because they have no way of knowing who would have had remission on their own anyway. I suppose they use statistics, but IVIG isn't without risks.

You're not a failure! We have another mom here, Alison, who has rarely ever treated her son. He was a young teen when diagnosed and is now off to college with his 20k to 30k counts (high for him). In my eyes, she has been a very responsible, vigilant mother who researched, learned, and did the very best that she could for her son from day 1. Hopefully she will chime in. She's the one you need to talk to.

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

Can't afford sons treatment! 5 years 2 months ago #60808

  • Evansmom1
  • Offline
  • Posts: 12
  • Thank you received: 1
It's so encouraging to hear about others going through this and living "normal" lives (although, of course, I wish ITP did not exist). Faced with the cost and starting to learn more, if his numbers are still in the 28-30 range, I am leaning towards continuing to wait and see. I will keep asking questions and researching until then! :)

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

Can't afford sons treatment! 5 years 2 months ago #60809

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
Ask away! That's what we are here for.
Yes, people with ITP can and do live normal lives. Usually it's the treatments that take the 'normal' away temporarily. In time, nearly everyone finds their comfort zone with or without a treatment.
The following user(s) said Thank You: Evansmom1

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

Can't afford sons treatment! 5 years 2 months ago #60813

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1699
  • Karma: 10
  • Thank you received: 246
You are welcome. Yes it does explain the doctors sentiment. Perhaps you'll feel better prepared on the next doc visit.

If you're a numbers person, as I recall the numbers are 80% and 20%. Acute cases in children being 80 and 20 for chronic.
The following user(s) said Thank You: Evansmom1

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

Can't afford sons treatment! 5 years 2 months ago #60863

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
Hiya,
I'm not sure I can live up to that billing!!!
We had three enormous advantages when my son got diagnosed 8 years ago. The first was that Dougie has never been a bleeder. I could never see any real symptoms until he got below 10-15 and other than nosebleeds recently, he's never had any significant bleeding despite his count being almost always under 15 for most of the last eight years.
The second good thing was his really great consultant, without whom we would have been lost - judging by your post, I'm not sure that your sons doctor would be similarly described!!! He stressed that we should ALWAYS only treat symptoms not numbers - he stuck to this even when my sons count hit 1 on a few occasions. Dougie only gets his count done a few times a year now because its mostly irrelevant what the number is. The doctor also emphasized that his job was to protect Dougie from harm, but this meant considering the harm of treatments too and balancing this against the potential harm from the condition. None of the available treatments are without risk - and that includes IVIG which is a pooled blood product. Kids in the UK and Europe generally do not routinely get treatment for ITP unless they have significant bleeding symptoms. But outcomes are virtually the same. I don't think my sons doctor would consider treatment for most cases with a count over 10 at the most.
Our final stroke of luck was Dougie himself. He found ITP quite testing particularly when his count was under 10 and he wasn't allowed to play football (soccer) - to be honest, his doctor said 20, but we weren't quite as strict. But Dougie has never considered himself ill, and he's just got on with life with very few amendments. Yes, I've lost it with him on more than a few occasions when I caught him climbing trees or cycling without a helmet, but on the whole I think not making too much of a big deal is the way to go. Your son can 100% lead an almost normal life with ITP. The reason I didn't reply to this earlier was because we were away taking Dougie to start University. He's run half marathons and more recently a marathon. He cycles, plays football, swims.....everything anyone else does, with the exception of heading the football. His last count was 31 so about the same as your son. ITP is occasionally a nuisance (he had to have treatment for a minor operation for example) but it's not really a consideration in everyday life.
I'd suggest reading up as much as you can, and particularly making sure that you know the symptoms of a GI or brain bleed which need immediate treatment. Make sure that the other people who care for him also know these and that your son knows them too. Then try and chill a bit. Above all, don't think you are a bad mum because you can't afford the treatment, because actually the weight of global medical opinion is in favour of not treating kids who have your sons counts but.no bleeding symptoms.
If you ever need talking down from the panic ledge, I'd be happy to help, just message me......I've been there!!
Ali
The following user(s) said Thank You: Evansmom1

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

Can't afford sons treatment! 5 years 2 months ago #60864

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
P.s.
I've always thought it was useful to think about counts in 10s. 0-10 be careful, keep an eye on symptoms, make sure carers know. 10-20 chill a bit but still take care. 20-30 was always a bit of a party time for my son because it happened so rarely - we'd take him to do the more dangerous stuff like climbing walls, go kart racing and paintball!!
The following user(s) said Thank You: Evansmom1

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

Can't afford sons treatment! 5 years 2 months ago #60956

  • juliannesmom
  • Offline
  • Posts: 300
  • Thank you received: 57
My daughter was diagnosed with ITP at 12. Her platelets were 23 at the time. Soon after diagnosis, they fell to below 20, and our hematologist treated with IVIG. I think, in part, that was because she was a new patient and the doctors did not know how she would tolerate the low counts. Later, she treated with IVIG when the count was 3. She treated again with IVIG at a count of 15, but the treatment was due to a nonstop nosebleed. IVIG was a good "rescue" treatment for her, but the nice high counts only lasted a couple weeks, and they started trending downward within days of the treatment. It was good to know there was something if she had a bleeding emergency, but it was certainly not something we would have done lightly or just to improve counts. In our case, IVIG required hospital admission. It was expensive, even when health insurance paid all of its share. It was upsetting and unsettling to her. IVIG was, and is, not without risk, as Alison pointed out. My daughter had terrible side effects from the first IVIG treatment, with a headache so severe she was readmitted to monitor and underwent CT, in case she had a brain bleed. If her symptoms had not subsided with treatment, she would have undergone lumbar puncture to check for blood in her CSF. The symptoms improved, and she was deemed to have experienced aseptic meningitis (irritated meninges, from non-infectious cause, in this case, reaction to IVIG). For the subsequent treatments, we knew to ask for benadryl and tylenol, before, during, and after, a steroid shot after, and above-normal hydration, before, during, and after. This helped head off the aseptic meningitis.
For the most part, we did not treat. Our daughter tolerated counts in the teens fairly well. We tried decadron pulse treatment, but, after the first pulse, her count dropped precipitously to a level she previously tolerated just fine - 15. With the rapid drop came a nonstop nosebleed (lost about a pint), the one that led to her third IVIG treatment. She had prednisone to increase the counts for tooth extractions needed for braces, and the extraction was done in the OR in case of hemorrhage. She had a bone marrow aspiration done to rule out other causes of thromocytopenia. Our hematologist wanted to do this before using steroids, in case the steroids were to mask some other cause of the low platelets.
Our daughter had been an avid volleyball player, but missed a season when her counts were at their lowest. She played tennis instead, as long as the count was 30 or higher, with a rule from her doctor that she would not dive for the corners. Her PE teacher at school accommodated her, finding ways for her to participate in training or keeping stats when she could not safely play the sport the class was enjoying.
We learned that a little extra vitamin C helped with bruising, by improving vessel integrity. (A little too much can cause diarrhea, so be careful with dosing.) We used the capsules. The dry chewables are just a bit too tart for most folks. We learned pineapple juice helps with resorbing bruising. We learned methods of preventing and stopping nosebleeds. (She, like her father, is simply prone to those.) One great help in coping through all this was that we had wonderful pediatric hematologists, familiar with ITP, available at a nearby medical school hospital. They were wonderful at advising and guiding us through all this. They essentially were her primary pediatricians, as we would not treat nor vaccinate for anything without consulting them about the impact on her ITP.
A little over two years after diagnosis, our daughter experienced remission, and continues to have good counts at age 23. We don't know how remission happened, just as we don't know why ITP happened. Her counts began to trend upward toward safer levels, and eventually reached normal and stayed there. (She did, along the way, contract an odd bacterial infection while on a school trip, and required treatment with doxycycline and other meds. I often wonder if the doxy played a role in the remission, but I'll never know.) We know ITP could recur, but we all enjoy the remission. She still gets a CBC more often than most persons, just in case.
I know this was a long post, but I hope you picked up something helpful, if nothing more than knowing that your son could have a spontaneous remission, and, if he doesn't, can enjoy his teenage years. As Alison said, most patients and families can reach the point where ITP becomes a manageable "nuisance."
Norma
The following user(s) said Thank You: Evansmom1

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

Can't afford sons treatment! 5 years 1 month ago #61256

  • Evansmom1
  • Offline
  • Posts: 12
  • Thank you received: 1
I'm sorry for the delayed response! I havnt been on here and I wish I would have checked these messages sooner!! I definitely need some talking down from the ledge. Ugh. Since I posted this, Evan has still been a stable 28-30 with expected Petechiae and bruising. Except this week he's started having nosebleeds and I've been starting to freak out again, I can't help it, lol. I started taking him to a different Dr and have not treated him with anything yet. Tomorrow he goes again for his blood work. I am really encouraged to hear about your son and congrats to him! I wish we had found a good Dr in the beginning. But I'm extremely grateful for everyone in here, giving us newbies great information and most of all hope! I will definitely have to stop being so overprotective over every little thing. lol I'm sure Evan will appreciate that! Thank you again!

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

Can't afford sons treatment! 5 years 1 month ago #61257

  • Evansmom1
  • Offline
  • Posts: 12
  • Thank you received: 1
Hi Norma! I'm sorry for the late response. I am so sorry your daughter and family have been through all of that! Thank you for sharing your story! I had read the side effects were bad for the treatments, but wow your poor daughter. I am understanding more about using the treatments as an emergency way of treating the symptoms. I am now praying Evan won't need anything verses me trying to find a way to pay for the treatment. This is the first week Evan has started having nose bleeds. What did you do to help? I had them as a little child really bad but I didn't have ITP so it was just normal for me. Thank you again for your post and I'm so happy to hear your daughter is still doing well!

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

Can't afford sons treatment! 5 years 1 month ago #61261

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2371
Sometimes nosebleeds don't have anything to do with ITP. Sometimes they do. It could be due to dry heat; tis the season. My nice had them also as a child and did not have ITP. Try some Vaseline in the nose to see if that helps.

Good luck with the count tomorrow!

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

Can't afford sons treatment! 5 years 1 month ago #61282

  • alisonp
  • Offline
  • Posts: 1052
  • Thank you received: 119
Dougie had a lot of nosebleeds last year. He had some blood vessels in this nose cauterised and whilst it seemed to make things worse for a few days, they have completely stopped now. Not sure it was to do with ITP as all his brothers have had a nosebleed problem in their late teens too. Good luck with the count.

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

Can't afford sons treatment! 5 years 1 month ago #61283

  • juliannesmom
  • Offline
  • Posts: 300
  • Thank you received: 57
For the nosebleeds, our doctor gave the same advice Sandi did: a small amount of vaseline swabbed just inside the nose on each side. (He said it cuts down the "turbulence" of air movement, and lessens the likelihood of irritation and drying.) Cauterization helps some people. Also, saline nose sprays morning and night, to keep the mucosa moist and clean, can help prevent the bleeds. We also found the extra dose of vitamin C helped with vessel integrity, which necessarily then lessens the capillary breakage and minor bleeds. Eating foods rich in vitamin K can lessen the severity of all sorts of bleeds. Managing any seasonal allergies helped, as well as avoiding the regular use of drying nose sprays. That said, during a bleed, Afrin or other decongestant nose sprays were good for shrinking vessels and stopping the bleed, so we kept a "nosebleed kit" in the car that included Afrin, paper towels, wet wipes, and a bottle of water (for clean up and rinsing the yucky mouth). An ice pack right over the bridge of the nose can help slow/stop the bleed. There are nosebleed stopping treatments out there, which are usually a swab containing potassium or some other agent designed to coagulate and stop the bleed. I bought this, but my daughter's bleed was coming from the sinus, beyond the region that the treatment could affect, so they did no good for us. Once we learned where the bleed was, we focused more on sinus hygiene and preventing the bleed than stopping it. She is now an adult and still has them, but rarely. Hope this helps.
Norma

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

Can't afford sons treatment! 4 years 11 months ago #62168

  • jahel318
  • Offline
  • Posts: 5
  • Thank you received: 0
You should look into St. Jude's Children's Hospital. I don't know if they have one where you live but there are several spread out through the US. They offer free treatment if your child qualifies for certain types of blood illnesses. ITP is one of the things they do cover. It may be worth getting onto their website and researching. I hope this helps!

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

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo