15 year old son recently diagnosed

Hello to all of you and let me say how thankful I am that I have discovered this amazing website. What a wealth of information and advice this site has provided in the past few weeks since Evan was diagnosed with ITP. This is still very new to us and at the moment I feel like I have a million questions needing answers, but for the time being I am going to concentrate on preparing for our appointment with the Hematologist later this week. Evan had experienced several severe nosebleeds and then developed petechiae following an unidentified viral infection several weeks ago. A CBC revealed a platelet count of 3000. He was immediately admitted to hospital and following an initial IVIG treatment increased to 36,000. A second treatment 2 days later raised his count further, to 97,000. Unfortunately, his count steadily decreased since then with tests this week at 30,000, then 10,000 and finally 5,000 when he ended up in hospital again Friday for another severe nosebleed. He has received 2 IV doses of Solu-Medrol since then and is scheduled for 2 more. As I said, he is scheduled to see a pediatric Hematologist later this week. If any of you would care to share any advice regarding what you found helpful in your experience it would be most appreciated. I'm sure you must all understand what a comfort it has been to realize that there are other families out there who are learning to live with ITP as part of their lives too. Thanks for letting me be a part of your group.
Louanne

Louanne - I was hoping one of the parents would pipe in, but it must be a slow day. My advice would be to go in as informed as you can be regarding treatments. That way, you will be able to discuss next steps and understand possible side effects and risks and even possibly make suggestions.

The most common treatments are:

IVIG - which you are already familiar with. It is usually pretty temporary and is usually a rescue treatment, meaning that it can be used to get counts up fast, but won't last long. Not a good way to manage ITP long term.

Prednisone - side effects can be nasty, but it can cause remission. Might be worth trying to see if he responds and see if it will last. It is usually used as a first line treatment.

Win-Rho - takes about an hour to infuse and can raise counts pretty well for some people. It can be a decent way to manage ITP if a person responds and can maintain safe counts for a month or so.

Rituxan - more of a heavy duty treatment, but can cause remission. Recent studies have shown that when used with Decadron, it can produce a longer-lasting remission. It requires four weekly treatments that last about 6 hours.

The good news is that ITP can remit at any time, even if a person is labeled chronic (ITP for 12 months). It is often diagnosed after viruses in children and can be acute. Hopefully your son will be in that group, but you may not know that for a while.

Here is the list of treatments. There are more than I mentioned, but you may not get to those for a while. Please ask if you have any questions.

www.pdsa.org/treatments/conventional.html

Thank you for your post, Sandi. It is my intention to be as informed as possible when we meet with the hematologist in order to get the most benefit from our meeting with her. Like I mentioned in my original post, this site has been a big help as far as getting facts and advice on what to expect as we learn to deal with Evan's ITP.

Louanne

Hi, Louanne,

I'm sorry that you're dealing with ITP but glad you found this site. You're right - it's very comforting to know that other families are dealing with ITP and living through it!

As Sandi mentioned, it will be very helpful when you meet with the hematologist to be as informed as possible about treatments, etc. My son, Brady, was diagnosed 9-1/2 years ago, when he was 5. He has been through a number of treatments, but not as many as some. Brady was referred to a pediatric hematologist the night we got his blood test results so we were immediately treated there. Brady's platelet count was 2k when diagnosed and he was started on a pretty high dose of prednisone. Prednisone only brought him up to about 60k, but it was enough to allow us to go on a previously scheduled vacation the next week (couldn't miss the Disney Cruise!). Since prednisone didn't work, Brady then started getting WinRho, which worked for a year or so, then stopped working and we switched to IVIG. That worked for a few years, then stopped and Brady had Rituxan, which didn't work at all. We have now switched back to WinRho, but Brady's last treatment was in March '10 and his last count in March '11 was 62k, so he's somewhat stable.

At the beginning, it's definitely scary and it takes a while to figure out what treatments work and what you can tolerate. You also can't help but worry. I'm an extreme worrier, so there were days when I was consumed with reading and obsessing and that's okay. I think I quietly cried on the way to every treatment for the first couple of years - you gotta do what you gotta do to get through it. To me, it seems like a good thing that Evan had some type of viral illness just prior to diagnosis. It seems that much of the ITP in children is triggered by a virus. I'm not sure if Evan would be considered a "child" or an adult in terms of ITP but, as you probably know, something like 80% of kids have acute cases of ITP, where there is a complete remission within 6 months.

A couple things to think about with treatments: we have found that the brands of IVIG and WinRho can impact side effects. Brady gets very sick from IVIG, but the side effects were somewhat lessened when his doctor finally mentioned that brands can make a difference and tried Gammunex (I think that's right). The other things that helped lessen side effects were very slow infusion (requiring 24 hours in a hospital), lots of hydration before (water, gatorade, ice pops), during (saline drip with the IVIG) and after, as well as Benadryl, Tylenol and Solumedrol throughout the infusion. We would continue Benadryl and Tylenol for the 24 hours after returning home as well. Similarly, Brady got ill from WinRho until his new doctor switched to the brand Rhophylac, which greatly helped. Although you can receive WinRho from a 15 minute "push," Brady always receives it slowly - the infusion usually takes 1-2 hours. Again, it's important to hydrate before, during and after and Brady receives the Benadryl and Tylenol throughout and at home. For Brady, WinRho is a much easier treatment and he usually will only get a slight headache and some chills from it. During our many years we've also consulted a naturopath, a homeopath, been to healing masses, had Brady's hair analyzed for chemicals and been to an "energy healer." We are looking at going to a homeopath again - I think it's important to explore all avenues.

You'll find that everyone on here has had different experiences and reacts differently to the same medications. In the beginning, we had to treat Brady fairly regularly (every 8 weeks or so) because once his count dropped below 20k he would get bad nosebleeds. After a few years Brady received an IVIG infusion that kept his counts up for a whole year, but then it stopped working. Since we switched back to WinRho, Brady has often gone a year to 18 months in between treatments. We don't know why - we think puberty probably has something to do with it.

On this site, you'll see lots of discussion of treating vs. non-treating. I've been thinking lately that it's kind've a funny discussion because I'm guessing 99% of the people on here PREFER to not treat - I mean, who wants to put chemicals/drugs in their (or their child's) body? But many people HAVE to treat, for a variety of reasons. For Brady, we have to treat when he starts getting severe nosebleeds, which usually occurs below 15-20k. We have also treated him when he's low and we have an activity planned that he wants to do; we have treated before several ski vacations and so that he could go to an amusement park with his class. We never want to treat, but with active kids it's sometimes a necessary evil. Having said that, Brady plays basketball and flag football, rides bikes and scooters and continues doing so even when his counts drop down to the 20s. He'll be entering high school in the fall and wants to play tackle football. His hematologist suggested weekly counts and monthly treatments of WinRho during the season. Some people may think that's crazy, but Brady will only be a high school freshman once and will only be able to try freshman football once. So, if he definitely decides to play we will have to treat him. The people on this site are very supportive of whatever road you choose because everyone's path is different. I think that times have changed in the last 10 years of our journey with doctors looking at and treating symptoms more than counts. When Brady was first diagnosed, his doctor would push us to treat him as soon as he dropped to 20k and I would constantly battle him to wait until he dropped a little lower or started getting nosebleeds. Now, I think it's pretty much the norm to wait for symptoms in most cases.

Don't be discouraged by our 9-1/2 years of ITP! We found this site a couple years after Brady was diagnosed but in that time I have seen hundreds of kids come and go, and I would think that Evan has a very good chance of being one of those kids that has a short stay with ITP! If your stay is a little longer, stay confident that ITP is a bit of an annoyance but something that Evan can live with and live well with (bad grammar!). Brady just chugs along and mostly forgets about his ITP now. He is really active and looks completely "normal." The other day he said that a girl from his elementary school mentioned his "blood thing" and the other kids in his class thought she was just making stuff up. Life goes on.

Sorry for the super long response (!) and keep us updated on Evan's progress.

Hi Beth. Thank you so much and please do not apologize for the length of your post. I found all of it to be very helpful and I appreciate the time you have taken to share your experience with me. We are trying to learn as much as we can and be as prepared as possible when we meet with the Hematologist on Friday. Evan had his fourth and final dose of Solu-Medrol by iv this morning and will start a course of Prednisone tomorrow. We have been very fortunate that he has had no problems tolerating any of the treatments so far. For that I am sooooo thankful!!! Actually, aside from the viral infection which preceeded his diagonosis, he has felt quite good through all of this. I guess only time will tell if his ITP is acute or chronic but we are hoping that the Prednisone will stabilize him for the time being so we can decide where to go from here. I am very interested in exploring other treatment options, possibly homeopathy or herbal alternatives. I have just learned that an acquaintace of mine has a daughter with ITP and she has had great success with herbal treatments. She has offered lots of advice and provided me with the contact information of the practitioners she has dealt with here so that has been a big help.

I appreciated hearing about Brady's experiences. It sounds like he is managing quite well. I do agree that it is important to maintain as "normal" a lifestyle as possible, especially as teenagers. They are only young once and I want to do everything I can to make sure he doesn't miss out on anything if I can help it. He has been in pretty good spirits considering everything he has been through over the past few weeks. His teachers have been incredibly supportive which is so great because now he is not getting stressed about missing too much school. As I learn more and more about ITP, I think I am fortunate that Evan is old enough to understand what is going on with his condition - he can communicate what he is feeling and really be part of the decisions we make as far as treatments. I can't imagine how difficult this would be for a very young child (and especially for the parents). I don't think I'm a control freak but I already know that I don't like how ITP is so unpredictable. I guess I will have to learn to take it one day at a time and not let it take over our lives. Like I said, I want things to remain as normal as possible for Evan and the rest of our family.

Thanks again and I will update soon with how Evan is doing
Louanne

Louanne,

Since you mentioned other options you're looking at I want to encourage you to really consider classical homeopathy. There are a number of people on this forum that have used it successfully and some still in treatment and holding their own while they wait for platelets to rise. My son's story is scattered throughout the natural forum as well. We treated our son homeopathically and he is doing fantastic. And unlike some medicine side effects, a wonderful side effect to the homeopathy is his food allergies are now gone (he had 40+ of them). So definitely read the natural board and the stories on there. And just so you know that IVIG is not benign, my son was given Hep. A antibodies via IVIG that really messed with his system until we could clear it out (took 6 months). There was also a serious question re: if he would end up with hep. A as a result because the doctor/hospital could not tell us if he had gotten active hep. A virus or just the antibodies. A low dose of prednisone made him bleed like a stuck pig and also impeded his healing. A watch and wait is an acceptable option,, if he's not bleeding, while you're researching your options. We watched and waited with zero platelets for 3 months.

All the best,

patti

Hi everyone, I am new to the website as well, and these discussion groups have been a great resource, though would love to find a local support group (Greensboro, NC) My son, Garrett 12 yrs. old, was diagnosed back in March, though we think he has had ITP as far back as late November when he was playing tackle football and seemed to be bruising more than usual, then continued with large "knot" bruises during basketball season.

I find it fascinating how every case is different. Garrett went from 65,000 to 11,000 in 2 days. The MD says a sudden drop like this can indicate a tendency towards chronic ITP?
But his lowest number, checking weekly, has been 3,000, but no signs of bleeding other than a few areas of petechiae and a couple of shin bruises. So we have not sought treatment as of yet, though am thinking it would be a good idea before summer camp in the mountains this summer. Last number 11 days ago was 30,000, so we are going to just check every 2 weeks unless symptoms show up.

What is confusing to me regarding treatment is I hear depending on which hematologist you ask they can all pick a different treatment, even within the same practice! How do you decide which to do first???

Hello Shudnell. How great that his numbers are rising without treatment. In my opinion that a good indication of it not being chronic! Just my opinion though, not sure about the medical facts there. Read Sandi's post above about the different treatments, and if needed you just need to decide which one you prefer. Of course it would be ideal to discuss it with the doc too! Kudos to you for waiting to treat, imo that's a good thing!

When my teen was first diagnosed, the hematologist we first met with in our group suggested IVIG as the first treatment, because it was partially diagnostic. If the child didn't respond to IVIG, it didn't mean it wasn't "just ITP," but if the child did respond, it generally meant it was "just ITP." Our group said steroids could cover up or mask other, more serious, reasons for platelet deficiencies, and, at that time, they didn't generally use steroids unless they first did a bone marrow test, or had a history of the patient responding favorably to IVIG. They also avoided long-term steroid use, for the usual reasons. I'm not sure they're still sticking to the "IVIG first" method, since new studies and guidelines have come out recently. What BethF said about the IVIG side effects is right on the mark. I'd follow those suggestions even if IVIG has not yet given your son a problem. My teen responds well to IVIG, and we like to know we can rely on it, but the first IVIG treatment she ever had resulted in aseptic meningitis (just meaning meningitis-type symptoms, but without a "germ" to cause it), and another night in the hospital. After learning Beth's tips, we got through her other IVIG treatments without severe side effects.

There's a great article in one of the April 2011 Blood Journal issues. Can't recall the date, but Sandi put a link to it on here. It has the latest international consensus on diagnostic and treatment issues. I wish I'd had an article that specific at the start of this journey.
Norma

Thank you to everyone who has taken the time to comment on this thread. Evan is doing well at the moment. We met with the Hematologist on Friday and were pleased to hear that she concurred with the treatments recommended to Evan by the ER doctors and the pediatrician in our hometown. (The nearest Hematologist is 2.5 hrs from our home). He seems to be having a positive response to the Prednisone at this point, with a steady increase from 25 to 47 over a period of about 4 days. I know it is still too soon to tell how his ITP will play out, but at this time I just want to get to a place where he will be stable for a while in order for us to take some time to consider how we want to proceed with any further treatment if and when necessary. I have to admit that I am very frustrated by the fact that we basically went from never having even heard of ITP to dealing with it in an emergency situation - we never really had the chance to learn about it before having to make the decision to treat. Because Evan presented with severe bleeding I don't really think that we had any other options but it still is difficult to have to learn about everything after the fact. I am really hoping that we will be able to investigate alternative treatments but while he is still prone to bleeding I'm not comfortable taking any chances. Have any of you ever been in this position or felt this way?

I think the hardest part of ITP in the very beginning is on the one hand they told us we could watch and wait and on the other they told us with a count of 1000 he could have a brain bleed. Well, which is it? Because I can't believe they'd accept a watch and wait if he were at a huge risk of a brain bleed. KWIM? You really don't have to do any treatment they suggest to get past the initial "danger" unless one is bleeding. We found that the treatments we did in those initial days simply caused more damage and added to the time it took to heal. I wish we'd watched and waited from the very beginning. There's no doubt about it, sitting at zero for 3 months is nerve wracking, but so was the side effects to what we agreed to treat him with. So no matter what you do, it's all nerve wracking at this moment. That part will get better.

I agree Patti, the first few months after being diagnosed are the hardest because you don't know anything and your really relying on the doctors for advise and to be told in the same sentence that at a count of 1000 you could have a brain bleed, and we can either treat now or watch and wait, i know what decision most people with no experience or knowledge in this area would typically go for. Some of these treatments can have really bad side effects, so you have to weigh up the options and decide if it is something you believe is worth looking into and possibly putting it to action.

Once you start to research ITP and spend some more time on this forum, you will start to feel a little more confident of being able to deal with it all, just know we all know what your going through and we're all here to support each other.