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  • julia
11 Feb 2010 16:09
Replied by julia on topic Painful bones
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
  • julia
11 Feb 2010 16:01
Replied by julia on topic Needle phobia -- any suggestions?
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
  • julia
11 Feb 2010 15:48
Replied by julia on topic Infertility & ITP
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
  • BethF
11 Feb 2010 13:24
Replied by BethF on topic Needle phobia -- any suggestions?
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
  • gilly
11 Feb 2010 13:00
Infertility & ITP was created by gilly
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
  • tali
11 Feb 2010 12:34
Replied by tali on topic For the Newly Diagnosed
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
11 Feb 2010 12:03
Replied by on topic Shingles?
And don't scratch it!! Glad the medication is drying up the blisters - take care sweetie!
11 Feb 2010 12:00
Replied by on topic Painful bones
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?
11 Feb 2010 11:54
Replied by on topic Staying logged in
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.
  • dots
11 Feb 2010 10:57
Replied by dots on topic Needle phobia -- any suggestions?
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.
  • dots
11 Feb 2010 10:52
Replied by dots on topic Timothy bleeding symptoms
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.
  • lucidawn
11 Feb 2010 10:45
Timothy bleeding symptoms was created by lucidawn
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.
  • dbishop
11 Feb 2010 09:33
Replied by dbishop on topic Dougie's School Trip
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 :)
  • julia
11 Feb 2010 08:00
Painful bones was created by julia
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
  • solentgal
11 Feb 2010 07:01
Replied by solentgal on topic child age 5yrs with chronic i.t.p
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
  • liam12
11 Feb 2010 06:22
Replied by liam12 on topic liam back on predi
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.
  • Angel85
11 Feb 2010 04:24
Replied by Angel85 on topic Good numbers for Devyn today!!!
Thats Wonderful news, Hope they stay there for a while
  • Angel85
11 Feb 2010 04:20
Replied by Angel85 on topic liam back on predi
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
11 Feb 2010 03:54
Replied by liam12 on topic liam is starting school
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

  • liam12
11 Feb 2010 03:52
liam back on predi was created by liam12
hello,liamis back on predi today had 2 blood noses that took a while to stop today. i hope everyone is doing well.
  • ktonooka
10 Feb 2010 19:38
Replied by ktonooka on topic Dougie's School Trip
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
  • ktonooka
10 Feb 2010 19:35
Replied by ktonooka on topic Good numbers for Devyn today!!!
That is wonderful news, I'm so glad for you, enjoy it.

Karen
mom to Jordan
  • Sandi
10 Feb 2010 19:23
Replied by Sandi on topic Rhema Appt
What was negative? How is the itching?
  • tigereyes
10 Feb 2010 18:52
Replied by tigereyes on topic Rhema Appt
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.
  • alisonp
10 Feb 2010 18:42
Replied by alisonp on topic Good numbers for Devyn today!!!
Hi Deanna

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

Ali
  • dbishop
10 Feb 2010 18:27
Good numbers for Devyn today!!! was created by dbishop
Devyn went for his CBC today and his platelets were at 129,000!!! Although i know that this may only be for a short period of time, i am so thankful!!! At his last visit 2 weeks ago he was at 51,000, so definitly a good jump.

Wishing for many platelets for all the incredible kids with ITP.....

Deanna
  • liam12
10 Feb 2010 17:52
Replied by liam12 on topic liam is starting school
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
  • tacmom
10 Feb 2010 17:08
My kidney problems really are a result of pre-eclampsia which turned into Toxemia, leading me to have several health problems afterwards. I don't think it is auto-immune related, but interestingly, I came across a clinical trial that is looking for participates with my kidney disorder to try Rituximab. Unfortunately, the study is in Indiana. It would be so cool to do this at the same time as Caitlin!

I always thought my kidney problem (FSGS) was from toxins in my blood (trying to reject my pregnancy since it was a foreign object)that basically created scarring of my kidneys, which allowed protein to go into my urine. I took both Prednisone & Cyclosporin for quite a while and I think these meds led to my joint pain. I guess I really should look for a new rheumatologist, but will ask my nephrologist for a referral so the two of them can work together.
  • alisonp
10 Feb 2010 15:00
Replied by alisonp on topic child age 5yrs with chronic i.t.p
Hi

I live in Crewe and my son has had ITP since last May - 6 months with counts under 20 and then the last few months all over the place!

My son also has a consultant who prefers not to treat unless there are serious bleeding symptoms - it seems to be the norm over here, although not at all in the States. Although I found this very difficult at first, I think it is OK now. It was difficult to live with when he was at school with a count of under 5 or even 1 on a couple of occasions, but he didn't come to harm. #I just keep repeating the consultants mantra now - counts aren't important, symptoms are (and when he says symptoms, he means something more than petichiae or bruises). All treatment for ITP seems to be a balance between risks, side-effects, and benefits and I am just not convinced that the (small) risks are worth it. I think its a decision that you have to be happy with as a parent though, and if you aren't go and talk to your daughters consultant again - they are doing trials of new drugs for itp at the moment in some hospitals and there are a lot of alternatives you could try.

You must be very strong to cope with this alone and for so long, so don't give up

Lots of luck, Ali

P.s. I am guessing you live somewhere in the Portsmouth/Isle of Wight area?? I grew up in Gosport!
  • alisonp
10 Feb 2010 14:39
Replied by alisonp on topic some comments from Danica's mom
Hi Michelle
If you sign in and go to the My Profile button, then Edit my Detais and the signature line is on the Forum Tab I think.

I am sorry to hear that Danica is still doing much the same in single digits. I have realised in the last few weeks how much I worry about Dougie when his count is low, and how much it all improves when it is higher. You must all be getting very tired of it, including Danica - since Dougie's count has been higher, I've also realised how much happier he is when he doesn't have to worry about platelets! I am really grateful that he has had the last few months without being in single digits, and I am also still very much hoping that ITP is a problem that will just disappear (Donna, I know, I know, but I am only hoping, not expecting!)

I am also waiting to hear what happens with Tim's Nplate, Caitlin's rhematologist, and Danicas new steroid - so keep us all up to date!

Lots of luck, Ali :cheer:
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