Just asprin, I had read that they can also choose to use cytotoxic drugs - I don't want any more of those, if I can help it :woohoo: !

Sandi, Have you tried Cadbury Creme Eggs!!! MMMMmmmmmmmmm!!!

Hi Gilly,

Hope this info helps. Hubby and I had 2 children and decided that was enough for us, so Hubby had a vasectomy. Years later we both came to regret that decision and turned to IVF to conceive our 3rd child.
My ITP was discovered at the beginning of my IVF journey, but after talking to many specialists we were told we could proceed. My counts untreated were between 20 - 60 000. The fertility clinic wanted a count of 100 000 for the egg retrieval, so I did a week on pred to get my counts up. We only got 1 egg and 1 decent sperm off hubby, and I am currently 36 wks pregnant. Miracles do happen.
I think your Dr is overreacting about hyper stimulating, here in Australia every thing is closely monitored, and they adjust your meds accordingly. Do you have PCOS (poly cystic ovarian syndrome)? This means you have trouble ovulating and have more chance of over stimulation. I have it mildly, so they started me on a low dose, too low, thats why we only got 1 egg, luckily for us we only needed 1!
All the best.
Emma

Hi Sandi,

They are concerned about the high count, but haven't had a chance to talk to Haematologist in person yet. I think one factor in the decision to treat is probably because of the documented clotting issues associated with Eltrombopag/Promacta.

Have you broken out the Berry Panacotta yet?

Vanessa

The blood lady has just been, I will know todays result in a couple of hours,and the chemist has just delivered the asprin for the Thrombocytosis. I feel unwell with the infection,as antibiotics have not kicked in yet. A bit concerned as it could be MRSA as it would seem like it was picked up during surgery, and I have had it in the past, and it comes in handy, as I always get my own room when admitted !

I appreciate being able to rave here, as I have a lot of time on my hands,alone at the moment.

I thank God for this site, for Sandi and for all of you!

Julia, I like your sense of humour!!! :laugh: :laugh:

I know Disneyland and Universal Studios, but have not heard of Bush Gardens?? Are they in your part of the world??

How are you doing on your treatment?

Vanessa :laugh:

No. She hasn't had any shots in that area. She did have a hip injury in that area four years ago, but the dimple is new. I guess I will call the pediatrician tomorrow and see what she thinks. Thanks so much for your reply.

Momspot

Hi

We live in Cheshire (UK) - What about you?

I had heard that ITP would be expensive to insure before we went on holiday, but it didn't seem to be at all. I guess it might be more problematic if you have a lot of bleeding symptoms, but fortunately my son doesn't. I seem to remember that it was exactly the same category as my moderate asthma, so not bad at all. We did get told by the hospital to ensure that we went somewhere with good hospitals just in case though.

I am sooo jealous of anyone going to tunisia - I bet you are looking forward to it!

Ali

Hi all. My 18 year old daughter was diagnosed with ITP in February of last year. She had petechiae on her legs and arms and her count was 14,000. She was also severely anemic. She's been taking Iron 325 mg twice a day ever since and her hemoglobin stays at a healthy 12 unless she skips even a few doses. Her ITP was treated with Prednisone most of the last year. She was finally able to taper off in December. Her counts are steadily falling though. Her count two weeks ago was 130. Her hematologist wanted another blood test in two weeks (tomorrow) and an appointment in four. He keeps talking about taking out her spleen if her counts keep falling. But he hasn't really mentioned any other treatments! I know there are other treatments to try. Taking out her spleen at this age seems drastic and it's my understanding that it doesn't always work.

Our pediatrician, whom she still sees, confidentially suggested we get a second opinion. She said with the children she sees who get sent to a Children's Hospital they often don't even treat unless the platelets get very low. I know that she's eighteen so maybe adult onset and pediatric onset are treated differently?

Any suggestions?

Also, of course she bruises easily due to the anemia and generally is sporting several bruises. But she told me she had a dent the other day. It appears that she had a bruise on her right buttock about the size of a fingertip. The bruise has faded to a faint blueish color, but there's a small indentation (also the size of a fingertip) still there. It seems like somehow the tissue was damaged? Has anyone else had anything like this happen?

Thanks for any replies!

Wow, its like Disneyland,Universal & Bush Gardens all rolled into one! What a ride!
Hope you feel better and more normal very soon.
Julia

thankyou for that.....are you UK or US

Hi

We went to Spain for a week when my son's count was under 20. I declared his count/condition and his recent hospital stays to the insurance company, but they weren't over bothered - I think that we had to pay an excess on our normal insurance of £10 or something. Try phoning round a few to ask - I tried a few because I couldn't believe that there wasn't a higher excess charge, but they were all pretty much the same!

Hope you have a good holiday anyway - Tunisia sounds so tempting givcen the temperature outside in Crewe at the moment!!!

Ali

her count last week was 3 has been low as 0 beofre now yeah has brusied easy and sometimes she willget blood blisters in mouth witch bleed or if she has a cold she will get a running nose with blood in it to

hi new mwmber and recently diagnosed..platlets today are 61.
i need holiday insurance for tunisia......... how xpensive will this be...

Sandi...I am glad to hear you think it is a good rheumatologist since you do have experience in this field. Sometimes experience is better than expertise. I know that because I worked in a psychiatric hospital for a while trying to train to be a counselor (psychiatric disorders and drug/alcohol addiction) while I was doing my Masters. I was asked several times if I would be a chaperone for different people and I had to tell them that I had never even been drunk or tried any drugs. That was hard for them to understand and even the people who worked there finally said you have to have some experience (if not yourself than someone close to you) to really understand what these people go through. It was an eye-opener for me and I was young so I had time to change my major. (Just my point in saying why I value what you have to say! )

I truly hope she doesn't get the diagnosis of Lupus. If Caitlin has it, it is definitely in the mild form so that gives me leeway to keep her from getting worse. Keeping her out of the sun will be hard though. She LOVES the water and we just built a pool and can't wait to use it. We are also going on a cruise this summer for my parents' 50th anniversary and have a trip planned to Florida as well to stay at a place that we stayed at a few years ago. Caitlin spent all of her time under water diving for hermit crabs and scallops. And I'll never forget the baby shark that she and her friends caught. Scary, but awesome moment!

Seeing the rheumatologist basically nod her head when she heard me say splenectomy was a big relief for me. I really don't want to go there just yet. I am scared about the huge doses of prednisone, but glad to hear that others have gone through it and seemed to tolerate it. Caitlin did not do well on 80 mg so it really seems scary. I'm not going to jump the gun yet...there's still hope that the diagnosis won't come, but I am mentally preparing myself just in case and I can jump for joy if she doesn't have it. Thanks for your supoort everyone...it means alot!

Oh, BTW, he lost all the weight he had gained fairly soon-I think within 6 months.

Josiah, my other son, was treated twice with a five day pulse of 1000mg of steroids (IV). He gained a little weight, but for him, it was good cause he is such a skinny kid. He reached a normal weight for the first time in his life, lol. But, he didn't have any negative side effects, though he had two of those pulses in two months (plus the taper). He had it for MS. i was concerned because of his heart disease that it would be too hard on him, but he tolerated it well.

Tim's family (dad's side) also had alot of lupus, and Tim often gets the butterfly rash, but he has never had a positive ANA. The hemonc did an ANA last week, and at my request a TSH (thyroid stimulating hormone) because on my side there is alot of hypothyroidism, which can cause ITP. We should get our results this week, but I imagine if he was high(TSH), they would have called.

I hope you get answers, and I hope its not Lupus.

A few years ago there was someone on this board whose child or grandchild (can't remember) had ITP and was taken away because they were accused of child abuse. I don't know the outcome of the case, but it was a tough one. I'm surprised they didn't do a CBC to find out a platelet count.
I took my son to his pediatrician's office. If they suspected abuse (the peds), they never mentioned it, but they immediately did a cbc and his counts came back very low. One nurse did give me a horrible look when she saw a handprint on his back where I had been holding him still for the blood draw. In those days, his bedsheets would give him bruises from the wrinkles! He also presented by waking up with bruises everywhere. They were concerned with leukemia, but we have a family trait of chronic ITP, so I kind of knew what was going on.

Let us know what is going on.

Yeah, my cousin is heaps better now, they still don't know why he was having so many seizures, but he hasn't had any since then so thats all good. Yeah, i'll try to make it on next tuesday night, it has just been a big couple of weeks with work. Thanks I start that on friday, so i'm hoping it all goes well and it keeps my counts up to a good level.

Thanks Lauren . I fell like a walking, talking contradiction at the moment! I missed you on the Aussie Chat, hope you can make it sometime How is your cousin doing now?

I hope all goes well with the Nplate.

Kind Regards

Vanessa

Wow, i have never heard of a count that high, especially for someone with ITP, Hope your platelets go back under 150, but not much under that soon!! We want them to stay high, but not that high lol!!

Today's count is...........................755!!!!!!!

My Dr and my Haematologist both feel that the huge rise is a combination of surgery/anesthetic, Intragam, and a cellulitis infection internally in op site, which I found out I had today !!

Hence feeling so unwell! Had stitches out today.

I have to have a platelet count everyday at home, until count is under 150

I am waiting for Haematologist to ring re starting treatment for Thrombocytosis.

I have seven hospital appointments in the next week! My head is spinning!

Sandi, I can really relate to the blank mind effect :S ! The op was an umbilical hernia, and was very big! So the surgeon said!

Tamar, I used the term big "Big Dipper" after the ride at Luna Park in Sydney, by the Harbour Bridge! We went there often growing up :laugh: .

Have stopped Eltrombopag.

What will tomorrow hold????

Vanessa

Vanessa, I was afraid from your subject line that you had a big dip. I'm pleased to see it was an inverted dip!!

hi, my son liams creche had asked us if we has seen the bruises on liam!!! we told the that we did and that he was undergoing some tests and we would tell them the results when we got them,lucky for us we had a good relationship with the staff as our other boys had gone there. The next week we asked our doctor and heamo to write a medical certificate and gave it to them,our heamo also told us that people might question us re the bruising and to be prepared. jenny

Pauline,

I am really keeping everything crossed for you and Caitlin - must be hell waiting weeks for results like that. Her appointment sounds very thorough though, and I guess with all of these things, its better to know than not, because then you can make better decisions about treatment and lifestyle.

I hadn't realised that there was some connection between lupus and ITP, but I am not very well read on either.

Lots of luck, Ali