I’m really posting this at the request of my 15-year-old daughter. We’ve had a harrowing week! Last Monday (March 31st), our very own gothiebaby was taken to the ER for the removal of a piece of glass she had stepped on. The ER doc noticed a lot of bruising on her legs, and said he wanted to do some blood work. Well, one thing led to another, and by last Friday, her doctors office called to say her platelet count was very low (about 5,000; 150,000 is normal) and she needed to go to Morgantown, WV on Monday for a spinal fluid biopsy! So, we worried all weekend. All the info I could google addressed things like leukemia, lupus, and other scary, deadly stuff! So, we spent all day today in Morgantown. The pediatric blood specialist she saw won’t have the results of the bone marrow draw until tomorrow, but from her history and the other lab results, he doesn’t (thank God!) think it’s anything like that. He thinks it’s ITP (immune thrombocytopenic purpura). This is a disease where your immune system, for some reason, decides to start killing your platelets! I’ve googled ITP, and gotten some pretty good info, but she wanted me to check in with you good folks, too, and see if you have any real-life experience with this disease.
I worked with someone who had ITP. I don’t remember all the treatment details, but that was about 10 years ago, and he is now married & has 2 children, so I think whatever it was worked. It was pretty scary at first because nobody knew what it was, and he was one of those guys who would never go to a doctor because he was terrified of needles. Finally had to get a couple of other guys to practically drag him to the hospital. I wish I could remember what it was they did. But then, that was 10 years ago, so there are probably better treatments then anyway.
MLS, I certainly don’t know what treatment your coworker had, but the most common treatment these days is no treatment at all. There are drugs that can be used to treat the condition, but they often have side-effects that are worse than the disease. The only known cure is a splenectomy (surgical removal of the spleen). This carries a 70-90% cure rate, but of course the big problem is that then you no longer have a spleen to carry out its function in assisting your immune system. This is only done in cases where the platelet count drops very low and remains very low. In gothie’s case, her platelets have come up to 13,000 since Friday, so it doesn’t seem like anything this drastic will be necessary.
If you do a search on the boards you will find a few threads that I have started about my son and our four year bout with ITP.
Started when he was about a year and a half old.
The only option is not taking out the spleen. That is a last case resort.
And we have had no major issues with the short term quick fix medications. There is no cure only quick fixes since they don’t know what causes it and they don’t know what cures it.
Normal count is 150-500 thousand. We have been as low as 2,000 and with that you have to worry about brain hemmorage.
We have had 6-7 hour nose bleeds and have come within inches of having blood transfusions from said nose bleeds. That comes with the lovely vomiting of blood since you can’t digest your own blood and when the nose gushes as his was there is going to be some swallowing.
It can be treated with IVIG which is a four hour synthetic platlet booster and was a real blast when he was a toddler. If his rh factor was positive he could have had a 15 minute IV push of the same kind of stuff. They also can treat with high doses of steroids. Slower process and bad for the tummy. Large doses of antacids go with this.
This time last year I was in Iowa City childrens hospital with him for like two weeks. It was a pretty scary bout. They did bone marrow testing on him to make sure that he didn’t have something else going on along with the ITP that may be compounding the problem. He was all clear.
For those who don’t know I will tell you that when a person with ITP gets a virus the white cells get over agressive and attack the platelets cause a low count. This causes horrible bruising.
I was told to look for petical bruising and little blood blisters in the mouth. It usually starts for him with the flu or crupe.
When he is low but not dangerous he looks like a child abuse victim. At the school the nurse has a plan of action in case he starts a nose bleed there. From there we go to the lab for a draw.
It’s pretty bad when you know the lab people by name, but it is nice cause we know who works well with Dylan and who doesn’t. Which is important when working with younger children. We had one girl who drew bad labs twice and we do not go to her anymore.
gothibaby might have to worry about pregnancy when she gets older. But the good news is that as far as Dylans hemo specialists know this isn’t a genetic trait so Dyl and gothie should have no worries about passing this on.
If you want to hear more about what I have delt with or any ideas or just need someone to listen I’m here. Trust me on this.
IM me or e-mail me. If you e-mail put SDMB in the subject line so my junk mail doesn’t filter it out.
I also forgot to mention that when Dyl was first diagnosed we were told that it was a one time deal that most people either never know they have it or they outgrow it.
From what the doctor told me was that quite a few babies have it but the platelets take care of themselves and so the parents never realise it and it goes away before it is noticed.
We will go about six months (finally) without a bout and the hemo guys will tell us he is in remission and pretty much done with it and soon after that we are right back up and the university hospital.
And please Gothie if you are reading this over a shoulder I would really like to talk to you myself.
You see I have been dealing with this for four years now since Dylan was a toddler and unable to really tell us what he was feeling. Sickwise, with his body.
I mean we notice the cold or flu, and we notice he is more cranky and rundown. Goes to sleep around 5 or 6 which isn’t normal for an active 6year old. When he gets that big barky cough I ask him if he is starting to feel bruisey and then we take a flash light and search him from head to toe for bruises. (the flash light does help)
But I have never really gotten him to put into words what his body feels like.
This is interesting. I am QUITE sure that he did not have surgery. I know it did involve an IV of some kind, so maybe it’s the IVIG that kricket referred to. It was quite expensive, since his doctor had to be very aggressive with the HMO. I have lost touch with this person in the last few years, but see some mutual friends occasionally, and AFAIK there have been no further treatments and the only occasional news is that the children are doing fine, etc.
I do recall that it is one of those things that nobody knows what causes it at all.
No, I think you misread my post. I didn’t say a splenectomy was the only treatment, just the only known cure, the only thing that fixes it permanently. All other treatments are temporary. Thanks for all of your input.
Expensive is an understatement. For the first two years we didn’t have health insurance and then we got some and they didn’t want to cover it since it was a pre-existing condition. When I got my coverage through work they didn’t even question it and are now covering it but I still have lots of money out there to the childrens hospitals.
I even broke down and tried for state medical but even with five children and both of us working we couldn’t get help. Kinda sucked being right in the middle there. Not enough to afford care, but making like $20 too much a month for medical help.
I’m going to take a stab at that last post being norinew and not gothie.
I didn’t mean to sound rough with that if that is the way you took it I apologise.
I remember what it was like that first night and the doctor telling me what was going on and gosh, not to worry but take him up to Iowa City right away cause he could bump his head and bleed to death.
But, if it weren’t for that doctor my son would have died that night. We took him in because we thought maybe he had broken his arm at the babysitters.
X-ray showed no broken bones…nurse calls DHS…if doctor wouldn’t have just been to a conference on autoimmune diseases and run lab work, hubby and I would be in jail, our son would have went into emergancy foster care, and there he could have died from his count being so low.
Actually when we got up there they did a cat scan right away thinking we were already dealing with a brain bleed.
I’m keeping my fingers crossed that this is a mild case for you guys. Either way it can be scary as heck.
When his count is low I don’t sleep until it is over at least 20,000. At that count there is less of a chance of brain hemmorage or spontaneous nose bleeds.
I will be thinking of you and doing my “up count, Up!” chant, so let me know what the next count shows.
Are you doing weekly or monthly counts?
And remember to give gothies fingers lots of kisses cause she will feel like a pin cusion for a while. And don’t let them tell you that it has to be taken out of the vein. They have little warming pillows to warm the fingers so the blood flows a little faster.
The lab tech that we don’t let draw anymore tried to tell us the only way to do it was vein. That was only because that was the only way she was comfortable with it.
Do you know how many people it takes to hold down a toddler for a vein draw? Three nurses and a mom!
Finger sticks all the way now and he doesn’t even flinch.
Get some rest norinew and gothie…and if I’m talking too much go ahead and tell me to shut the heck up.
Thanks, Kricket. Yeah, that one post was me, but gothie was logged in, and I didn’t realize it. As of Monday, as I think I said, her count was 13,000. Doc wants weekly draws for 3-4 weeks to see if this upward trend continues, then probably monthly after that.
We thank God for State sponsored children’s health insurance, cuz that’s what we have. The income guidelines are pretty generous. Hubby and I don’t have health insurance for ourselves, but it’s always the kids’ health care that runs into the big bucks, it seems!
Feel free to e-mail me at any time. Either one of you.
Just remember to put SDMB in the subject title so that way I don’t accidentally delete the letter.
The best place for info on ITP is http://www.pdsa.org they also have a discussion board at http://discuss.pdsa.org - you’ll find lots of valuable info and support there
SPLENECTOMY IS NOT A CURE - OR A VIABLE TREATMENT IN A LOT OF CASES - just wanted to emphaise that, the sucess rate long term is actually very low - lots of ppl have the ITP come right back after surgery and lots have it come back in a few years time …Iv’e heard over and over and over again in ITP circles, why take out a perfectly good organ that isn’t diseased and is just doing it’s job? It really doesn’t make sense. The problem isn’ t with the spleen, taking it out is often nothing more than a bandaid.
Anyway, I highly recommend anyone interested check out this site, it’s a valuable resource and definately the best place online to get comprehensive info on ITP.
I’m Tal on those boards too, although I don’t post there a whole lot because my own counts, tho low are stable
Also please keep in mind that the “book” docs often go by as far as ITP is very outdated, there’s been a lot of developments in more recent years as far as treatment etc goes. So please, do your research and don’t just take your doc’s word for things…
Tal, thanks for the input! gothie’s doc does seem to know what he’s talking about, and seems up to date (he’s not just a doctor, he’s a pediatric hematologist). He did indeed say that splenectomy is a last resort, and isn’t even considering it in our case. He also said that the splenectomy is not even always effective. Right now, her platelet count is up to about 40,000, better than it has been since all of this started!
i’m glad her counts are up a bit…take a good look around the PDSA website, and thier message board…there’s lots of very good info there, you wont’ regret your visit
