I'm having major anxiety over this. I worry about bleeding out during surgery, blood clots after surgery, sepsis etc. I've had all my vaccines but they say that for 2 years after splenectomy you are at a higher risk of complications. The death rate for sepsis is 50-80%!!.
I meet the surgeon on Tuesday and I'll find out how soon I go. I've fought this for so long it's really hard to trust that everything will be okay. I'll probably be at the Dr's office everytime I get a skin rash!!!!

Michelle

Great to hear Donna!! Let's hope it just keeps going UP!!!

Deanna

Mariette can't you call your doctor and ask what "abnormal platelets" mean - that's what I would do. The nurse might be able to answer the question and if not then have the doctor call you or give the info to the nurse to relay to you.

Good luck!

got the bp controled with meds and im not taking any stuff other than bp meds and still hitting gym benched 175 monday

Thanks for the replies. I can call the clinic and ask what the count is. It just seemed a long time to wait for results. As others have said, having abnormal platelets doesnt mean its ITP. I understand that, but would like to know what it does mean!!

Hi Melinda, No5 is called Chico for now, Peter doesn't like the name & im not so sure but don't mind sticking with it. Peter is thinking hes more of a Rocky cos he is a big bruiser, i think hes more of a (Mickey) Michael cos hes a lover not a fighter :laugh: He got on fine with the other cats which im not surprised he must have lots of kids & great great great grand kids by now! He's frightened of the dogs but he will get used to them. He was sitting on my knee last night in front of the fire & i was massaging loads of knots out of his bad leg, hes took some cod liver oil and a joint tablet straight from the hand and ate them, he just purrs as soon as he sees you.
He's had a good checkup by the vet the shelter takes them to for his re occuring ear infections & abcesses but im thinking of an xray for his leg, his stomach is also huge, hard and round, the other vet thought it looked very odd but she couldn't feel any abnormality other than huge, hard & round.

Glad Killian's going well bless her! They can live just as well as the others with a bit extra tlc and be even happier!

Julia

Wow great count Vanessa! I hope your not going back to the top of that ride again youl be sick! :silly:
Julia

The answer to question 1 is that many of the experts now are treating based on symptoms, not the platelet count. However, a "rule of thumb" in the US seems to be to start thinking about treating if counts are ~30K. In the UK, that number is more like 10K. If Molly has symptoms at higher counts, then doctors will consider a higher treatment threshold.

Question 2...rituxan is a miracle for some, does nothing for others. It's a serious treatment, and you should read up on it. Also, there's been some success with much lower doses than the "standard" (which was based on dosing for cancer). If you decide to give it a try, I'd suggest bringing in the research on the lower dose and having a discussion with the docs about that (if they don't bring it up as an option). Many insurance companies require preapproval of rituxan for off-label use (which it is for ITP), but lots of companies do cover it.

Yes, it can be VERY FRUSTRATING!!!

One day, you think they are doing well, and worries are over, and the next - things come crashing down. It is such a struggle sometimes.

Keep your chin up and good luck with your little guy,

Michelle - Danica's mom

Oh donna - I hope that the NPlate continues to work for Tim. It is so nice to read about this improvement. For so long, the only counts we ever heard of from him were under 5K, so this is great.

Michelle

Okay - number 1 -- I am happy now that I don't have to go through all those screens everytime I want to log in. FINALLY - I can just go to my favorites, and go straight to General Discussion for parents.

Number 2 -- thanks for you words of encouragement!!! It really helps.

Number 3 --- WOW -- BIG PRICE for Caitlins IVIg. Multiply that by the 27 times that Danica has had it -- astromonical. Crazy eh?

Michelle

AND I have tried, but I still cannot figure out how to get my information at the bottom of all my posts. Help

Yesterday's count was 69! I am thinking the eltrombopag has kicked in, although with me you never can tell, as I swing constantly throughout the month.

Thanks Jenny and young Liam !

Vanessa

I completely understand what your saying there and taking time off school is fairly easy, but in a work position, i find it hard to take days off every single time i am sick as i only get 15 paid sick days a year, and although my current team manager and centre manager are very supportive of my situation, i still don't like to abuse their kindness by taking too many days off, especially if it is just because my platelets are low.

My job doesn't require me to do a lot of pyhsical things, i sit at a desk all day. I'm sorry but i go to work with a sore throat or a little cough all the time, Sometimes it is just not feasable to stay home. I just make a point of not being too close to people and to wash my hands if i cough or sneeze. If i don't seem to be getting better or am getting worse, of course i will then go to the doctor, but it can take a few days to even get into see the Doctor. My work also gives free flu shots every year as well cause we are in an air-conditoned building with over 200 people in the building.

My count has come up quickly on NPlate. I started at 16,000. After one week, count was 31,000, next week 53,000, etc. Last week count was 98,000, this week 90,000. This is much better than the last two rounds of pred did. This week I haven't had a headache, or any other side effect. I am happy.
I hope you get good results with it.

I've always been really cautious with my boys because of Josiah's immune compromise(his heart conditions made him immune compromised because his 02 sats were so low (68%) that his body could not fight off infection effectively. That and the high dose steroids for MS lately, and now Tim with his steroids and Rituxan. I don't take chances. I believe if someone is sick they should stay home. I actually get offended if someone is coughing (obviously sick) or compliaining of sore throat, etc at school (my school), runny nose, etc. Or when runny nosed kids come to public places like school or church...I really think sick people should stay home so others don't get sick. Its from years of my son being hospitalized by catching a cold and then getting pneumonia from it. I used to have a sign on my door listing symptoms and saying, "if you have any of these symptoms, don't bother to knock. Go Home!" lol. Call it PTSS, I don't know.

Yesterday we went to Children's Hospital in St. Louis to see a new Hematologist about Molly's ITP. Her hematologist here who's been treating her for a year was pushing for a removal of her spleen. Since I've learned from the boards that isn't always effective we wanted a 2nd opinion. Boy was there a difference!

They told us at the new doctor's that they don't even treat unless the count is below 10! Is this normal? I understand that there might be some difference in treating children and adults and at 18, molly is right on that edge. I guess I'm a big scaredy cat, but walking around with such a low count seems scary to me. What if an emergency appendectemy was needed? Or a head injury was sustained??

Anyway, since tapering off the Prednisone in December her counts have been dropping, but very slowly. She's down from 350 to 127. The game plan is to watch her with monthly CBC's for the next four months and see if they stabilize or continue to drop or crash. If they get below 50 they want to think about doing Rituximab. The problem being the expense and the possibility of it being denied by insurance. They felt that surgery should be a later option.

My fears are that she is leaving in August to go to school for two years two states away. She is not good about taking care of her own health (are any teenagers really?). And she would not be able to come back here for treatments.

They told us that they have had very good results with Rituximab and that they have had complete remissions from it. And that they are very careful and most patients don't experience many side effects.

So I guess my questions are:

1. How low does your doctor deem safe for normal life?
2. Is Rituximab the miracle drug they made it out to be?

Any answers would be most appreciated! Thank you.

PS- she starts getting symptoms when her platelets get below 90. Bruising and petechiae on her legs. She's also anemic, but that's very well taken care of as long as she takes her iron.

Watch your calcium levels too. With steroid treatment you'll need extra calcium.

These fluctuating counts are SOOOOO annoying!! I agree, at 50 or 60K you can effectively forget about ITP because it isn't a problem and my son at least has no symptoms. So it is a big deal all over again when he gets a low count.

Why don't you take Dale to do something special but safe like going to the flicks with a friend (sorry, movies) while your other kids do their thing. He wouldn't even have to know about it.

Hope you have a great weekend

Ali

Pauline and Beth

Your comments about being REALLY ill made me laugh. When I was a kid, my mum was a primary teacher in a very small school and teachers just never took time off, so if we couldn't go to school it was a real problem to her. I can only remember it happening once or twice. She used to have this rule that if we were ill enough to skip school, then we were clearly too ill to watch TV or do anything else nice. We used to have to stay in bed all day, eat this really horrible blanmange stuff and read for entertainment. It definitely put us off trying to have a morning off to avoid double maths or something. My brother, my sister and I used to joke that we had to be on the verge of being admitted to Intensive Care before mum would let us stay off school!

Anyway, her attitude has stayed with me. I am really reluctant to let the kids have sick days from school myself to the point where I sometimes think I go too far. Dougie had a day off with a cold in November because he had a really high temperature, but I can't remember the last time before that, and my 9 year old Laurence is in the really unusual position of being the only kid in his class who has never had a day off sick. When he had shingles I didn't know what it was (thought it was just a rash) so I carried on sending him into school although he was complaining about this rash hurting. LOL - I am a bad mother!!!

Ali

Thats brill. What is he doing this weekend to celebrate - rock climbing, BMXing, boxing, knife throwing........or just hanging around being a NORMAL teenager!!! Hope he has a good one anyway

Ali

Have you had her counts checked? These all all symptoms that Timothy experiences when his counts are fluctuating, or dropping. Especially the fatigue, dark circles under the eyes, and the bruises that are not painful. His grandma has these symptoms too. The mood swings, holy cow! That is a big one for Tim. When he is out of remission, I want to run for the the caves in the biggest mountains. Wow.

I know its frustrating. So sorry for the drop. Hopefully he will come back up. You migth think about letting the older kids have their fun, though. They will resent your little one if you don't. Just from experience...

That's up from 31k last week. I think that means we'll be holding at last weeks Nplate dose. I'll let you know if that changes, but I'm pretty sure. We are waiting for his meds right now. His hemonc said not a petecheia on his body. He said he thinks he can hit him this week, lol.

Julia what a lucky guy #5 is to have caught your heart! It sure does sound like he has had a hard life, now he will be able to relax and get lots of food and loving! How is he with the others and do they like him?

The Queen is doing well bless her heart, still skinny but I think that is going to be her from now on - she's a happy camper and that's all we ask!

Oh, does #5 have a name?

Yes, I had low potassium, probably because of the pred, and I take prescription potassium. When it gets too low, my energy is also very low. I couldn't get the level up just with foods. Erica

I hope Caitlin feels better soon! I have the same issue with Brady - not knowing if he's truly not feeling well or what. Just this week he complained of a headache/ stomachache. I sent him to school but got a call in the afternoon and had to go get him. When he came home he ended up eating a normal lunch, so it didn't really seem like he was sick. I don't know if it's from missing so much school due to treatments, blood tests etc., in the past that they start kind've liking a little time at home? One of Brady's former teachers (who has 3 kids of her own) told me that she sends her kids to school unless they have fevers or are throwing up. But it's not always so cut-and-dry with our kids. And with a stomach bug going around your area (ours too) it's tough to know what to do.

Hope she's recovering!

Beth - mom to Brady (age 13, diagnosed 1/18/02), last WinRho treatment 12/08

Very cute.

I ended up picking Caitlin up at school yesterday. She slept/rested in the nurse's office for almost 2 hours before I got the message and was able to get to her. Her main symptoms were stomach cramping, bad headache, dizziness, and her bones hurt. There is a huge stomach bug going around so I'm not sure if she's catching something or if it's from the Rituximab. Problem is....she's complaining of these symptoms but she looks fine at times so it is hard to know if she wants my sympathy or if she is really hurting. I've always been able to tell when my kids were truly sick by looking in their eyes. Caitlin does look sick but it isn't consistent and I have to keep telling her to get back on the couch or in bed. She just now came in with a semi-fake cough and said her throat hurts! I don't want her becoming a hypochondriac!

Well after nearly 9mnths of relativly good counts 50-60.
We took Dale to appointment Wed expecting the usual he's looking good see you in a couple of months. Only to be told his count has drop to 27 ( possibly still dropping due more bruising and petechia, no bleeds yet fingers crossed). Just when I thought things were looking good I could handle the 50-60 cause he could still be a relative normal kid. Being nearly a 4hr drive away from the hospital we have to be a bit more cautious.
Now I have to try and slow him down a bit again, try telling a 3 yr no you can't jump on the trampoline, no you can't ride your bike over the jumps with your big brother and the list goes on. I hate feeling frustrated because we have to limit our weekend activities which means the older kids miss out.

I know it could be worse and I count my blessings that its not.
Just frustrated.


Dales mum.

Hey!

I've a doctors appointment next friday to see how my counts are doing.. Since I'm off meds for 2 weeks then.. I will talk to the hem. then about other treatment optionts.. Rituxan, WhinRO etc.. The doctor really wants me to try prednisone but I just don't want to.. I really really don't want prednisone.. So I'll discuss it with him next week.. Thank you all for the responses!