New ITP child with heart transplant in the mix!

Hi All...
My son was diagnosed in August with ITP. He had a heart transplant when he was a baby so is already immunosupressed. We've tried IVIG, Anti D (same as Winrho?), Methyl pred (almost killed him), Oral pred (high dose wean)....Nothing seems to be working. He's had a BMB and Aspirate to rule out the other stuff, and ITP was confirmed. He's not responding to anything. Numbers generally run below 10, and the pred in conjunction with IVIG tend to bring numbers up but they always plummet after. He's now on Mycophenalate for more immunosupression, Im assuming that there are not many other ITP children out there who have transplants to complicate things!?!? We're new to this and its horribly frustrating and scary. My son used to dwindle to 2-3 with no bleeding just the petichia (sp?) and bruises, just recently when he drops he does have some gum bleeding and mouth roof bleeding, but not profuse. Has anyone else had experience with initially no bleeding and that comes later? Im so happy to find this site, I thought we were alone in the world with this problem, and from what Ive read, we should consider ourselves lucky that our son dosn't bleed tons. I wonder if the numbers go lower all the time if eventually the tissue gets thinner and thinner and eventually bleed more often then at onset? Our hem docs keep telling us different stuff, some say its the end of the road and they are stumped and others say there are other drugs and other treatments we can try. Of course our case isn't simple with the transplant also being an issue. My son seems to like the pred, but is now down to 37 again, probably lower now. He had strep three times (I think this is the likely culprit) and now has bronchitis, but the docs say this has nothing to do with it!?!?! How can it not!?!? Anybody else finding the same thing??? Have all of you had to become researchers/physicians in order to put together all the differing hem opinions to make an educated guess on treatment options?!? Im mentally done from thinking too much! Thank you for being here its a great comfort! :silly:

Hi Angela:

I don't know that you'll find any others here who have had a heart transplant and ITP, but there are plenty of people with ITP and other medical issues. Yes, a lot of us have done research until our eyes fell out. Some of it is helpful and some not. The thing you will find out the most is that you can't predict anything, prevent anything, or find a cause.

Many times when people with ITP get sick, their counts drop. Some people were diagnosed after an illness like strep throat and although that wasn't the cause, it could have been the trigger. Sometimes antibiotics will cause a platelet drop, sometimes they will cause counts to go up. You never know.

No, I wouldn't say that in time the tissue gets thinner and symptoms get worse. Not true. Symptoms can be horrible at 5 one time and next to nothing at 5 another time. Things change and there are a lot of variables.

I think I'd stick with the docs who have more tricks and stay away from the ones who say it's the end of the road. It's not very often those words are spoken about ITP.

Thank you Sandi...

This site has helped alot, Ive learned alot. And one thing Ive found out through the whole transplant issue (spent 5 months in hospital in ICU) and on life support twice, kidney failure, lung issues, and a stroke, is that I am my son's only advocate (and my husband of course) and we've had to do alot of research. Because the children's hospital that we deal with is a teaching hospital, you have a lot of varrying opinions which is good, but for a parent its hard to put it all together with no medical background and come up with one thing to try....The pulse(methylpred) nearly killed my son and they wanted to try it again "just to see what happens"!?!?! Ummmm....NOT! For what a good count for two days??? It just isn't worth it when the oral pred along with IVIG bought us now about two weeks at home! Seems the safer route to me. Lucky Im not a lay down and die kinda parent who says okay do whatever, Ive done the footwork, and sometimes (for sure not always) try to make an educated descision on how to keep my son safe, but its hard and weighing on my already stressed out brain! LOL We've denied the hospital many "protocol" tests, and only do them when the need arises, of course with my son's well being in mind, so the same holds true for the ITP. I will keep researching and thank the good Lord for this site, because I honestly felt alone and scared in the ITP world, but now I know that there is many more of us out there. Thank you all for that, you just saved me from having to have a transplant of my own!!!!!!!!!!!!

Angela - you are already a step ahead by knowing that you have to advocate for him. It takes some people a long time to get to that point; you've had practice. That is always the number one thing to learn and you're already there!

You are NOT alone and there are a lot of us here with lots of experience. Any questions, ask away!

How old is your son?

Sandi,
My son is 10. His name is Joshua, he's a wonderful boy who acts as the "Walmart Greeter"! He'll run up to anyone and hug them, his pain tolerance far exceeds mine! He's a good kid who's been through so much, but he's doing many things that he wasn't "supposed" to do like LIVING! The ITP although frustrating and scary has been put into perspective for us by a staff physician who looked after him in ICU as a baby, he said yes ITP is a hard condition to treat, but in the grand scheme of things look at where you've been! This is a glitch...okay easier said then done. We don't have many people around us who have ITP, never mind children. When the local hospitals here his numbers of 2 or 3 they go into convulsions (so do we still!). Had it happen last week, took him to a local emerg for the bronchitis, and the er doc started shaking when she heard how low and how fast he drops, literally shaking!?! The children's hospital told me and her to continue with the pred wean, but she said screw them, common sense tells me that if his numbers are dropping, and he's sick, to stay at the 50mg/day and not go down to the scheduled 25mg/day. I went for hem clinic on the Monday following at the CH and they agreed, and kept him on that dose. Now his numbers have dropped again, and still they havn't called me back with a plan. With the Cellcept added to his already regime of immunosupression drugs (Tacrolimus) we are now crossing the line between ITP and transplant....but they can't get their crap together to come up with some plan, again they are leaving it on my shoulders....my shoulders are crumbling with the pressure! :S But we trudge onwards in our quest for comfort and Ive found that here. For us though its still a numbers game, us med mom's love our monitors and numbers so we can brainstorm!

Angela - ER docs who are not familiar with ITP do tend to panic; it's happened to all of us. I once had an ER doctor who didn't believe me when I told him my count was 3 two days earlier. He said I would have been admitted to the hospital and not permitted to work. He did a CBC himself and it came back at 44. He came in all smug and said "See? Your counts are not 3". I had been on Prednisone which is why they went up. I didn't care if he believed me or not. He didn't.

Anyway, single digits are scary, but don't let ER docs put you into panic mode. They sometimes want to do platelet transfusions which may be the wrong thing. Take your cues from the specialists.

He sounds like a great kid. You will both get through this. ITP is scary but it's been said many times that if you have to have a blood disorder, ITP is one of the better ones to have.

Sandi - Even the docs at the CH do a dance when they hear a three or four, but hem keeps telling us to look at him, and if he's not bleeding actively then he's fine....yeah okay, but like I said us mom's like our numbers! LOL My best friend has a medically fragile son, and she's a vet tech, they treat ITP in dogs all the time, so we often compare blood values and treatment options, she needs numbers as well. I don't know at what point in this whole picture we will switch from needing numbers to not...Whatever the case may be, we do consider ourselves lucky, things could always be worse!
Ive already been told that transfusions are pointless when they put them in they are getting destroyed as fast as they are going in. Thats no longer an option for us, I guess though when you've got profuse bleeding they use a prolonged platelet transfusion for a treatment option (so Ive heard?) but it won't fix anything in my son. The oral pred seems to be the way to go...although I wish there was some sort of fund I could draw on to support my sons new eating habit!!!!!!! Good lord he's eating me out of house and home. Well I will also continue my search for local parents of children with ITP, its so nice talking to people who get it, just how scary at first this thing can be, and how frustrating! Thanks for listening!
Angela

Hi Angela,

<deep breath> I could write you a book, but I won't. :laugh: My son was dx in May with a platelet count of 1. Since we had been down the blood disease road before with other family, I knew this was not good. As far as bleeding and low platelets, it IS possible to be very low and not bleed. My son sat at zero platelets for several months. We kept his cell integrity strong using naturepathic means. He rarely bled and if he did it was little drops in a sneeze or not being careful brushing his teeth (again, not bad). IVIG failed and prednisone also nearly killed our son. At that point we completely walked away from medicine (not easy to do with the doctor threatening us!). There is a woman on this board named April who has treated quite a few people from this forum using homeopathy. We connected with her and within days of her treating our son, he began to heal. We are still healing, but we're in the 100's of platelets, not zero. If you are at all naturally oriented, I would encourage you to search and read her posts on this forum. She is wise and and would know not to give him anything that would be harmful to his transplant situation. They go through years of schooling for this stuff. Homeopathy is unlike drugs. It does not tear the body down to heal it. It helps the body balance out so it can heal itself.

I completely understand where you're at with the ITP and doctors. You are braver then I. I don't trust teaching hospitals at all. But then again, I'm not a doctor person at all. I turn to natural medicine before drugs whenever possible. In this case, we let doctors scare and bully us before we had time to think about what we should do and wanted to do.

I am NOT in the camp of there is no healing for ITP - only remission. I think that's crap and I don't think it's truthful. Personal opinion. I hope the doctors aren't discouraging you (or your son!) that way.

Wishing you the best for your son. As I said, if you're at all willing to look natural, I would encourage you to look up April.

All the best,

patti

Hi Angela, my son is 5.5 yrs old and he also is on Oral Pred, kinda long term already so we have been trying to take him off slowly, really slowly. Now we are at 6mgs a day and all the bruises have swown up. Maybe in my count, around 50 bruises in his body,but no bleeding. My problem that comes from time to timeare the nose bleeds, and they come in spurts. My son hasnt had one in 1.5 months so were ok so far.

My advice to you is to always give Joshua water, dont resort to juices since it will make him fatter due to the sugar. And pred makes him thirst out of the ordinary too, so keep on offering water to him. Do not feed him too much salty foods also because its the salt that leads to water retention. Give him supplemental vitamins because preds suppress the immune system, you need to boost it with natural vtamins.

ITP kids always seem to be stronger than their parents, so be strong too

Thank you Athos...I will keep that stuff in mind. My son has no immune system left! With his heart transplant he was already on the Tacrolimus for that, now he's still on that + 50mg of pred per day, + they are doubling up on the cellcept so that gives him now 1000mg of that. Me thinks his immune system is toast!?! He's not going to school and hasn't since the first day, poor kid so wants to go but he's to liable to get something, like the bronchitis that he has now. Our problem now lies in when and if we can wean the pred and or the cellcept then we run the risk of rejection, didn't have any before and for sure don't now, but with his body getting so used to the imm. supression, he may have it later on. I hope to God not but that is what we'll be watching closely for when we do the wean. Of course we can't do a biopsy until his count is up significantly, so there really is no way to tell other than an echo which would only reveal heart function....He's a complex kid but arn't they all in their own little ways?!?!? LOL

I haven' had a heart transplant but was born with a hole-in-the-heart late 1960's when it was quite revolutionary. I was eight when they did the final operation. I was 25 when I first developed ITP (mine is idiopathic) and both Cardiology and Hemotology 100% believe the ITP is nothing to do with the heart history.

I only have weaker immune system because of having heart surgery and lost my spleen to ITP. My ITP is dealt with Steriods and IVIG but haven't really had any episodes for 8 years until this summer though have suspected odd drops but whenever I was brave enough to go through and get it checked they have been high - except this summer.

sorry I can't answer much on the questions. Just thought share a bit about my own situation for that moral support I hope

Rhiannon, thank you for sharing your story...I need all the moral support I can get. Today is a bad day for me. Yesterday my son (Joshua) seemed as though his count was really low again, and today it seems higher. The inside of his mouth specifically the roof was close to bleeding yesterday and today looks much better. I should be over the moon and I am, but my brain is slow and can't keep up with the "sharp turns" and "ups and downs" yet.....Im trying but its so frustrating. Today our hem docs doubled his Cellcept (MMF) as well as the high dose oral pred, Im afraid. He was on the MMF for 8 years and then two years ago he got pseudomonas and he was very ill, so they took him off the MMF and just left him on his Tacro for his heart. Now hes on all of it, I hope he dosn't wreck his gut. He is on Losec but I dont know if thats enough. Anyone else put on any sort of protection for stomach issues as a result of meds????
Im on a down swing today, a real low.... Sorry, don't mean to be a downer, we could be much worse off than we are, but Im still a newbie.

Poor Joshua has certainly been through a lot! Sounds like he's a real fighter (as are his parents, obviously).

I've had some heart issues, but I was lucky that they didn't come around until I was 42. In addition to the other great posts, I thought I would just add that it certainly is possible to live with very low counts -- counts that freak out most doctors. I've spent most of the past 3 years in the single digits. It surely is not want any of us want to do, but, you know, sometimes you have no choice. Some people are "bleeders" -- bleeding at even modest counts -- others are not. You kind of have to figure out what counts work for Josh. For me, anything above 10 is ok -- not preferable, but ok. And above 20 I go mountain climbing.

I was diagnosed with ITP at the age of 2. As I grew up, I saw the concern on my mother's face. As far as I am concerned, those of you who take care of us ITP'ers are heroes -- you, your husband, Don's wife, my mother. Hang in there. You are not alone (not even close). Sorry for keeping this brief but I took a sleeping pill a few minutes ago and I need to turn off the computer before it hits. Best wishes.

Thank you Gort, that means alot as does this whole board. Everyone is so supportive and kind. It really helps us to not feel alone. Joshua has been through alot including kidney failure, lung disease and a stroke, he's a hemi so is only working on half a brain as it is. But in the same regard is the strongest most stoic child Ive ever met (Im biased though! LOL) He's beat the odds alot more than once. He seems to be holding now with the pred and double MMF, so we'll see if we can't get rid of the pred soon. The scary part is, not now that he's got no immune system because we don't have to worry about rejection of his heart, but when we start weaning, if his immune system is in an uproar then we're having to be worried about the rejection at that point. I know one day at a time....Im jumping the gun a bit, but its my nature, count on the worst that way if something good happens Ill be over the moon. Bad attitude? Perhaps but thats me. I wish I could lose that and some days Im successful and others not so much.
Anyways, my little fighter is eating me out of house and home with the pred on board, but if thats my only concern Ill run with it!!!! He can afford a few pounds!
Thank you again for all the support.

Angela - don't be so hard on yourself. Everything that you are feeling is normal. Worrying comes with the territory when you're a parent, and any new medical challenge is scary. Just breathe...and take one day at a time.

Wow, after reading all that I must just say that little Joshua is a very brave little boy and a battler and so are his parents too. I think you sound like your handling it just fine, it's okay to have days when your feeling down and helpless, there all normal feelings to go through. He will be fine, if he could get through what he has had to endure in his life already, then I think he could handle anything life throws at him. He sounds like a tough little kid. Sometimes I think it is harder for the parents to have to watch their child go through it then it is for the child, just keep your head up high and take one day at a time and if u need to vent, then u know where to come because we will all be here for u.

Angel, thank you too....you are all so kind. I am just having a bad day, other things going on too. Family stuff. Joshua is a tough little guy and always so happy. It rips my heart out when, whenever Im talking to the children's hospital, he goes and packs my suitcase and his because now he always thinks we have to go down for IVIG. We've been home now for two weeks thankfully. He's really not happy that he can't go to school, not because of the ITP (well not directly) but because he has no immune system. The school tells me that they have many many children off sick, Josh can't handle anything right now since he has no immune system to battle even the bronchitis that he has. They don't want to put him back on antibiotics, but I think they should. His wee body just needs a bit of help. His numbers seem to be holding right now (I think!?!). He comes to me about three times a day and pulls his pantlegs up so that I can check his "peekies" and with a flashlight check the inside of his mouth. He's gotten to the point that in a store, he'll just all of a sudden pull up his pant leg and say, "Mommy I hope my bruises and peekies go away soon, are they better?" Ive also registered the ITP and him with the children's aid society, that was recomended to do so that no one thinks that I beat him. What an awful thing to do but I would die if someone thought that of me.
Well off to bed to give my broken brain and heart a break. Thank you all and bless all of you!!!!!!! Ive deffinately come to the right place and for that Im thankful.
Hugs to all of you!!!!!!!!

Angela I can only imagine what you're going through, I'm 25 and i still see the sadness and concern in my mom's eyes when we talk about my ITP. I think sometimes the parents take it harder than the children. Joshua sounds like a real fighter with a great spirit. I'll be praying for you guys.

Well by the sounds of things we're not the only ones playing the waiting game! I guess everyone does the same thing...went for CBC this morning, but usually results in having to chase numbers down tomorrow...They always say its not a numbers game, but I think for us it always will be, we find comfort in numbers that are safe...
Joshua went down to 58 two weeks ago, so the pred wean stopped and last week at hem clinic it was back up to 95. He now has the flu or whatever is going around as do we all, but I think and I hesitate to say it, that his numbers are relatively good. Since this whole thing started, his mouth roof has looked awful and his petikia never really went away, now finally his mouth looks better than it has, and his petikia are starting to "hit the road". His pred is down to 35mg/day and depending on the results from this morning will go down another 5mg. The cellcept is still at double dose, but they want to see if its working without the pred and hem says if its not then we're wasting our time....fingers crossed for good numbers tomorrow. I think Joshua also has a UTI on top of the cold or flu...hem said to brace ourselves for a long winter, as he gets sick, his numbers will go up and down...

hello.
my daughter is 10yrs post ht tx. Newly diagnosed with ITP. I Let hematologist start prednisone today. With major reservations. I am looking to learn more.
should we see an immunologist?