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

Hi Guys

I wondered if anyone has any experience or information on infertility and ITP?

Would really value any input, whether its advice or just getting to know someone who is in the same boat as me - having ITP and having difficulty in conceiving naturally. My Gynae/Obs Dr. has never treated anyone with bad ITP and I cant find anything on the subject on the web.

I have had ITP all my life and have been trying to conceive for 6.5 years. Now the Dr. is talking about IVF but says there's a risk that I could die if I experience hyperstimulated ovaries.

Would love to hear from anyone!

Gilly

Hi, we have a 3.5 months old baby girl just diagnosed with CAMT. Is your association about this disorder too? There seems to be so little information about it
Thank you

And don't scratch it!! Glad the medication is drying up the blisters - take care sweetie!

Julia recently my sister and I were saying how we have felt the cold clear to our bones
this winter. We live in a dry climate, high altitude. It makes my fingers hurt, have arthritis in some of them, and it makes my neuropathy symptoms worse. My fingers haven't gotten red & swollen though. What I've been doing when an arctic front is here or just
plain old cold weather is wear long underwear under my clothes - I have a brand called Cuddl Duds, thin and don't even know I have them on except I'm warmer.

If that keeps up do you think you should see the doctor?

I don't know why we log in on the discussion group page and then are taken to the main page. That really needs to change and it would be nice to know what time zone this forum is in and it would be nice to be logged in until we log out on our own.

He literally gets hysterical. Rewards don't work, unfortunately. This not a rational response. He seems not to be able to control it at all. I spoke yesterday with a social worker who does hypnosis work with kids and adults and has worked with clients with needle phobia. That may be the answer, but I don't know.

It's very interesting to me that a fingerstick doesn't bother him but an antecubital (crook of the elbow) stick does. Maybe the social worker can use that somehow.

Thanks, everyone.

Oh, Donna. I'm so sorry. Thinking of you guys.

As for the email notification -- when you reply, look at the box that says "subscribe." There's a box to check if you want to be notified when there's a response. It should work once you check it. You need to do it for each topic you're following.

Well, I'm sure he's bottomed out again. He's got petechiae from laying on his arm, and blood blisters in his mouth, and has a very mild nose bleed yesterday. Not sure what they will decide tomorrow, except that they will probably up the NPlate does.

Also, why don't I get email notification anymore from this list. I like that option cause it helps to not have to wade through the list every time.

It's funny that you mention the bubble wrap....i've said many times that if i could wrap him in bubble wrap or put him in a bubble then we'd be okay. LOL....it's very hard to let him be a 2 1/2year old but i know that i have to let him be a kid. Our family and friends have been a huge support and all know that he needs to be very careful when his counts are low. Even when they are high we still make sure because we never know what they are from day to day.


I hope that Dougie is still symptom free and that he stays that way....keep me posted on what his counts are at when he has his next CBC.

Deanna

Does anyone find they get chilled and in pain to the bones with the cold? I've always felt the cold but this recent cold snap my fingers are very stiff, sore thru to the bone and look quite red and swollen. Im finding it so hard to warm up also the rest of my old bones are sore with the cold.
Julia

hi ali thks so much for talking to me i live in the southampton area we are moving to u.s.a as i have family out there , it has been very hard since we knew and yes i do get down at times , but ur right not to give up god its so good to talk to someoen like ur self whoknows what its like thank you x

he is on 4ml per day for one week ,then we will get him re tested,he had his thrd blood nose about an hour ago,i hope he will be ok.

Thats Wonderful news, Hope they stay there for a while

Aww, thats not good to hear, what dose of pred is he on?? Hope is count goes up soon now that he is on the pred, but hope he doesn't have to stay on it for long.

liam12 wrote:

hello everyone,ive been keeping up with the posts and feel like im getting to know some of you,sometimes i find myself thinking of the kids and how their counts are. liams are low this week,he had a fall and hit his head,he was nearly admitted ,but because we didnt want a ct scan on his head< HIS OBSERVATIONS WERE FINE> the let us go home.
We will be back to heamo next tuesday. i have come across a group on facebook called TEAM STEPHANIE that i have joind ,although vey sad its for a great cause.Its to help raise money and awareness for itp.Its also based in America,ita a shame for me as i would have liked to volunteer a litte time,if anyone gets a chance look it up and see what tou think,ps ypu might need a box of tissues! thanks jenny

hello,liamis back on predi today had 2 blood noses that took a while to stop today. i hope everyone is doing well.

Hi Ali,
Was so glad Dougie had a wonderful, safe, and fun school trip, and even better for you with him having good numbers before he went. Hope it stays that way!

Karen
mom to Jordan

That is wonderful news, I'm so glad for you, enjoy it.

Karen
mom to Jordan

I had my follow up last week and everything was negative. The doctor was a bit suprised since from all of my symptoms she expected something positive. The only thing that was abnormal was some thyroid test. Not the tsh but some other test. She did switch me over to Imuran and cut back on the cellcept. I go back next month to see how I am responding to that and go from there.

Hi Deanna

Thats brilliant news - hope you enjoy a couple of weeks off from the worrying. And that it stays there!

Ali