thanks for your honesty,its given me something to think about

Sorry to hear that, hope they go back up soon and the symptoms go away

Wow, 32 is not too bad, thats good.

I have seen an ENT and I just thought I'd give you an honest opinion from someone who has had their nose cauterized more times then i can count when i was younger. I hated having it done and I was older then Liam when i started having it done, it is honestly worse then having blood taken or an IV put it. It is the worst feeling in the world and at his age, you will probally find it is hard to hold him down to have it done cause he will most likely try to fight it.

A two hour nose bleed and 4 in one day is a lot and probally does need to be looked at by an ENT, but i just thought i'd make you aware that it isn't a pleasent thing to be put through. I agree they did work for me for a while, but like the pred it too stopped working after a while, so i needed it done more times for the nose bleeds to stop.

my little one gets real tierd when herplatelets drop and yes she can become moody to i think where ya body is so run down trying to do what it has to do it can be exhusting for the child as well as ur self i find it worse when she gets sick with colds flu sickness i cant sleep to good always up waiting for something lol only time i get to relax when she is at her dads which anit offten another good thing moving to florida il have the support i need from family uuggg i cant wait

i have been looking on the net research realy willing to try and natural way to help my little girl i saw that raw veg and strewberrys and aloe vera was on the top list of things that could help raise the platelets i have also been mixing it in water u can hardle taste it i have been given her just the 10 ml to srat with and build upon it as says to take 25ml twice a day with or with out the water im willing to try anything right now just to help her she loves her raw veg so thats another pluse aloe vera is good for internal and out ternal .... we are moving to florida merritt island , her count at mo is 3 we did have a patch whereshe looked great for ages then bang it came back worse than ever she had blood blisters in mouth rash all over she was tierd as well another sign i noticed when her counts drop

thankyou so much for that info,the doctor didnt explain much about the ENT,and i must have been a bit tired because i just nodded and said ok,<long night.>liam is seeing his heamo on tuesday and i will definately be asking kim about it. thanks, jenny

Neither splenectomy (January 2004) nor Rituxan (August 2004) worked for me, but I don't think the splenectomy made the Rituxan dose any more difficult. Prednisone (usually doses around 10 mg) worked for me both before and after the splenectomy--that is, prednisone keeps my platelets at a low, but safe (usually 25-40) level.

I don't let my son play football (soccer) or any contact sport at all, since his count can drop precipitously without any symptoms at any time so he could get seriously injured. Luckily, he's never been interested. (I hope he wants to play tennis!) If you have a sense of your son's count, and therefore his level of safety, when he plays, then your consultant's probably right. A jet black bruise doesn't sound like he should be heading the ball, though. I'd tell Zac that he can get very hurt heading the ball and you don't want him to hurt himself. (Here in Brooklyn, kids aren't even supposed to attempt heading the ball until they're ten anyway.) I would think that rugby would be too dangerous under any circumstances, frankly, but I tend to be more conservative when it comes to rough play. At some point he has to know that he can't do everything he wants, or everything his friends can.

Is the consultant your pediatrician or your hematologist? If he's a pediatrician, does he have experience with ITP? I ask only because you say he's so opinionated about Zac playing.

Here's a link to a list from itpkids.org, which is a project of the Boston Children's Hospital, which may help you. The rest of the website is quite useful as well.

itpkids.org/content/itp_sports.html

Good luck.

yeah I used to just have the social page bookmarked w/ my login already there. I found that site, when you signed in while on a topic after signing in thats where u went... I miss the replybox at the bottom too i feel like im typing emails here.... and I dont remember what was already said without double checking! saddness is upon me ...wait just went to click send the the whole discussion is at the bottom of the page.... so that makes me feel a bit better!... on th eup side as well anyone else notice we can post pictures easy??

Now that's what we like to hear. Excellent news!

My son (9 in a few weeks) has nosebleeds fairly often, with two significant ones (four and five hours) that resulted in his needing iron supplements for three months. The right side was cauterized in the emergency room during the five-hour bleed, and that side hasn't bled since. It's been a year since then. His ENT and his hematologist (and my husband and I) all want to cauterize his left side, which we'll do after he relents and has his next IVIG infusion.

I'd get Liam to an ENT sooner rather than later so that the bleeds don't get worse. Four in one day is a lot; two hours is a long time.

Good luck.

sorry to hear he's dumped out and counts low. Hope he rebounds back up again.

The cold causes burning and pain for me too, although I don't do well with an electric blanket or a heating pad, because if I warm up too much, I get burning skin with that to. I have to maintain a comfortable body temp, because if it changes too much either way, I have burning pain. I don't like it to warm or to cold. If I could find a place to live that had 70-80 degrees all year long and no fluctuations in temp or dry to wet to quickly, because that's also a problem for me. If it's too dry or too damp or swinging from dry to damp.

I'm sorry he is having so many bleeding symptoms. They might need to use either IVIG or prednisone to keep him from bleeding until his count is at a safe level. Caitlin increased her dose each week until she was at .3 mcg then stayed there for a couple of weeks. Same with .04. .05 kept her stable for a long time as well as .06 but then .07 didn't work at all which was the max dose for her weight.

Enjoy the snow and your girls the long weekend to experience it.

We are lucky if we get more than a dusting of snow each year. Today we got 7-9 inches and the schools are closed tomorrow! My girls will have a 4 day weekend bec Monday is a teacher workday. We had fun building our first big snowman earlier this evening. [img/] [img/] [file/]

Hi Liam spent most night in hospital with a 2 hour nose bleed,count up to 32 with 3 days on predi,i feel sometimes its never ending,he had 4 blood noses yesterday,if he keeps having them they will gwt him to see an ENT specialist,has anyone else had to see one? thanks jenny

Hello, I have a sports mad 5yr old with itp. Our consultant is quite opinionated that Zac should do sports. We have talked to his sports teacher and explained the situation, just one time when he fell of a frame his knee went jet black. Every break time he tries to play his version of rugby and football so his skin is never clear. He has tennis twice a week and wants to play proper rugby but I cannot go there because I am just so frightened. My question is has anybody got feelings or info on children heading balls, I read that it is just a no no and that makes sense to a parent but I don't know how I would tell Zac. Thanx.

I would certainly mention it when you go for physio in a couple weeks Julia! Can't hurt right

I really like my long underwear [pants & top], they are thin & not bulky at all - I really can't tell I have them on, but they do keep me warm!

Sounds plenty cold where you are - I'm so looking forward to summer [spring where I live can still bring cold and snow].

Thank you, how sweet - I will give Killian that hug!

Melinda

Hi My son is 5 years old with chronic itp and we are on the watch and wait programme. Every 4 weeks he has his bloods done and then we see his consultant. After reading many threads I have come to the conclusion that he is being given the best treatment ie no treatment. I do feel that he can have horrendous mood swings and the dr said that this really has nothing to do with his condition. But he gets quite low and miserable and says mammy "why do I feel like this" and after having two other children now teenagers i now that this is not normal. I really do feel his bloods are dropping, he tends to mark easily after one of these episodes. I was surfing and found some seminar notes from american specialists and they are really trying to get the doctors over there to treat the patient/symptoms not the count. So maybe when you get over there things may be diferent. Good Luck.

The last time we were able to get the IV started (October), it did take 90 minutes, and he was quite proud of himself once it was in. We've tried several times since in order to prep him for his nose cautery, and he can't remember what it was that allowed him to be more comfortable. Unfortunately, the child life specialist can't remember either. I should check his chart to see if it was documented.

I'm beginning to think that sedation is the only answer, at least for now, but they don't do it at the clinic in case there's a problem. He'd have to have the infusion at the hospital so there's a team on hand just in case.

This is my plan for now:

Guided imagery on an iPod (done by his therapist, who he loves and whose voice he knows well)

If that doesn't work, a session or two or three with the social worker who does hypnosis work

If that doesn't work, admit him to the hospital and sedate him slightly so he allows the infusion. Stay overnight and have the cautery done in day surgery and go home a few hours later.

I'd like to see if the other methods might work first since we need a long-term solution, and sedation doesn't seem like the best option long-term.

I feel so bad for him, and I'm terrified of another significant nosebleed. ITP parents understand the fear and the unpredictability of all this. It's so hard.

Hi, Years ago I had a friend here who gave her son Aloe Vera. She would never come out and say she thought the aloe vera caused his ITP to reverse but I always wondered. I did give it to my daughter for a short while but she didn't like the taste of it. What made you decide to give it to your daughter? It's supposed to be healing and some people wonder about leaky gut and ITP so I don't know what it could hurt. Have you told your doctor she is taking it? If you notice any weird symptoms talk to your doctor. Best of luck with it. I tried quite a few things with my daughter. Vitamin C is thought to be helpful for some people and I have heard vitamin D also. You can get her vitamin D levels tested. Where are you going to move in the US? There are local support groups for ITP in many areas of the US now. You can find them on this site. My daughter had ITP with low counts from 12-14 but she has had a normal count for a few years now. She slowly rose over time. Let us know how your daughter does, Debbie

Thyroid autoantibodies can cause itching, although I'm not sure how, but I was tested for antibodies to thyroid for my itching. My was negative, as was all my allergy testing.

I'm glad your itching has stopped. I wish mine would. I'm having a whole slew of other symptoms, which I think point to lupus, as they are the same symptoms I had prior to transplant. Extreme fatigue, joint pain, muscle pain, all increased. My eyes are burning and very dry, my nose burns, I'm nauseous after I eat and have actually lost 10 pounds in the last couple of weeks. Headaches...the list goes on.

I'm very frustrated with it all. I'm taking 3 allergy medications, steroid eye drops and nasal spray, which does help some, but I'll flare and despite the medications, I'll feel miserable for a few days, come out of it, only to go back to miserable if I do too much. All I'm doing lately is sitting around and it's making me depressed.

At least the rash is cleared up, but if I scratch, it reappears. I see the immunologist in about 10 days, so hopefully he'll have suggestions on managing this better.

Everything was negitive on the report. Well with the exception of the thyroid anitbodies those were the only positive thing on there.

Just as suddenly as the itching came on its stopped. I woke up one morning and it was gone. However the rash on my cheeks has gotten worse.

Thanks Melinda, im going to look for some thermals they sound good! Im going to mention it to the heama end march when ive got my next appt if i last that long. Ive got physio in 2wks so will tell him too. Its 0degrees here at the min but i see in America & Canada its so much worse & dont think i could cope with that.
Give Killian a hug from me!
Julia

Poor little mite! Ive had/still have a needle phobia for as long as i can remember. I found the emla cream to cause more pain than without it too so dont use it anymore. When i had the BMB i had to be sedated and panic attacks to get the canular in. Im ok now with blood tests but can not go to the dentist as i will freak if they come at my mouth with a needle. It sounds as though your son goes into flight or fight mode with the anxiety and fear. If this is the case it can take 90mins to get through to him. Can they not give him a pill to help him go woozy beforehand?
Good luck with him
Julia

Hi Gilly, We started trying 15yr ago and it never happened. We had all the tests and docs found nothing wrong with either of us. After being given the all clear they gave me tablets to stimulate the ovaries & the consultant said we could try it but didnt expect it to work. It didn't so he put us on the list for ivf & forgot about it, once we got to the top of the list i told the nurse we had adopted a 6yr old and was told we no longer qualify for ivf. I was quite relieved by that time.
3Yrs ago this month i was diagnosed with ITP, I have come to the conclusion my immune system was rejecting Peters sperm as a foreign body and killing them.
I dont know if your consultant would benefit in talking with your heama, what is your count? Im sure you could from an eptopic pregnancy but im not so sure if its just hyper stimulating the ovaries.
Good luck
Julia

We've had the exact same experience with our son - hysterical, pulling his arm away, etc. The problem started because Brady has very difficult veins, so there was always lots of poking before success. We would use the Emla cream until we figured out that it was making the situation worse - actually causing Brady's veins to shrink and making it more difficult to start an i.v. Brady always gets finger sticks for blood draws, so we only have to deal with the fear when he's getting a treatment. Luckily, he has needed fewer and fewer treatments over the years, so it's less of an issue.

What we've found that helps: they always use the smallest gauge needle possible - they say it's the one they use on newborns. They tell Brady that the stiller he is, the easier it will be to get the needle in. They come in and "look" for a while before they ever attempt a stick. We get Brady's treatments in a clinic that is associated with a major teaching hospital. We actually schedule his treatments around the schedule of a sedation nurse who is phenomenal. She is the only person in all of Brady's years of dealing with this who can actually get an i.v. started on the first try. That has been the biggest difference for Brady - that he knows he isn't going to get poked six or seven times without success. It took us a while to find her, but once the practice realized how difficult Brady's veins are and how upset he gets, they wanted to help and offered several people until we found this one nurse who is exceptional. When she's ready to try, Brady always asks to count first, so he counts to three (it gives him a little control) and then she tries. We also do relaxation breathing with him before they come in and during the start of the i.v.

It's still traumatic and we avoid treatments as long as we can, but it is much less traumatic now than it was when Brady wazs younger.

Good luck - I feel for you. You'll find something that works.

Beth - mom to Brady (age 13, diagnosed 1/18/02)
last WinRho treatment 12/16/08