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  • Melinda
11 Feb 2010 12:00
Replied by Melinda 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?
  • Melinda
11 Feb 2010 11:54
Replied by Melinda 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
Replied by tacmom on topic Dr is recommending splenectomy over rituxan
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:
  • xray001
10 Feb 2010 13:47
some comments from Danica's mom was created by xray001
First of all, how do I get my information to show at the bottom of my posts? (i.e. my name, and the list of treatments that Danica has had so far)

Second - to Donna, Ali and Pauline - I hope everything is going well with your kids. I read Ali's post, and I am glad that Dougie is doing well, Donna, you are always on my mind and I worry so much about you and poor Tim.

Last but not least, Danica is still doing the same thing. Her count was 7 today, so we will go for IVIg #27 tomorrow. Her hemo is away for this month, so we will not start the Decadron until March. I am trying to be hopeful, but fear that it may not do as well as I want it to, as she was resistant to the Prednisone. I guess there is only one way to find out - and I guess we will do that in March.

Michelle
  • xray001
10 Feb 2010 13:37
Replied by xray001 on topic Dougie's School Trip
Ali - I am so glad that Dougie had a good time on his trip - and that you can breathe a sigh of relief that he had a great time, and came back no worse for wear.

Michelle
  • Sandi
10 Feb 2010 12:44
Replied by Sandi on topic Dr is recommending splenectomy over rituxan
Pauline:

Just from your description, that was not a good Rheumatologist. That really irritates me. A good one will know that autoimmune disorders can develop slowly and there are certain signs (elevated ANA, elevated SED, pain, etc) that indicate the patient should be watched. At the very least, they can help the patient manage things in the interim. Funny, my first Rheumatologist also gave me a muscle relaxer. I've been taking it for six years and didn't think it did anything either, until I decided to stop taking it. Within days, I had muscle spasms so bad I couldn't move. That is due to a problem I have with my neck though, not Lupus.

My second Rheumatologist insisted at every visit that I didn't have Lupus (fine, I didn't meet the criteria then), but he did prescribe meds that helped and he did do blood work every four months. Eventually, my dsDNA became positive and I had APS antibodies (which I asked to be tested for) and those gave me the criteria. One day he was telling me again that I didn't have Lupus and five days later after results were back he was calling to tell me that I did. I always liked him a lot because he listened to what I was telling him and he believed the symptoms even when blood work didn't prove it. Sadly, he moved across the country and I was stuck finding another one.

Anyway, if you know something is wrong, don't let yourself be pushed away. Usually if someone has renal problems, it's late in the game and could have possibly been avoided with proper care in the first place. I'm glad your PCP is on top of things!
  • tacmom
10 Feb 2010 11:59
Replied by tacmom on topic Dr is recommending splenectomy over rituxan
Thanks Sandi...I hope she has a good rheumatologist as well! I saw a rheumatologist last year for the first time and have not been back because they also felt like there was nothing going on with me even though I had joint pain and a positive ANA as well as some other test (I think Sed. rate) that was highly-elevated. She said it was not high enough for her to worry about it and sent me off with basically a muscle relaxer, which does nothing for me. She said that if I didn't have retinal & kidney problems, she wouldn't even see me because the blood tests really didn't reveal anything "way" out of the ordinary. It seems like you have to be in excrutiating pain for the drs to even flince nowadays! (Although I have an "overprotective" PCP who sends me off to have a test for every minor thing that is going on with me, hence the medical bills and negative results. I've been to a cardiologist, nephrologist, retinal specialist, pulminologist, gastro dr, and probably some others I can't even remember due to her wanting to make sure everything is ok. Only have to see the nephrologist and retinal specialist on a regular basis, thank goodness!)
  • tacmom
10 Feb 2010 11:45
Replied by tacmom on topic Needle phobia -- any suggestions?
I don't have many suggestions since Caitlin does really well with getting blood from her arm. She acts like she doesn't even feel them and went through two years of Nplate injections as well. Our nurse that draws blood is excellent though and always gets it in on the first try. When there is a sub, it's not always as good, but Caitlin is used to it. They have a tv in the room and a trainset that goes around at the top so many times the younger ones are distracted by that so they don't realize the needle is in until it is over with. Would a portable dvd player with a new movie distract him or something that he loves afterwards motivate him to go through with the sticks without drama? We've always done positive rewards even though Caitlin does well with them where she gets to pick where we go get lunch afterwards or some special dessert that evening, etc.
  • cheermom926
10 Feb 2010 10:35
Replied by cheermom926 on topic Nothing is Working
There is no "quick fix". I have changed my mind set. I don't obsess over the counts so much anymore. I go by how I feel. This has done wonders!!!
  • tofer
10 Feb 2010 10:21
Replied by tofer on topic Shingles?
Lysine works ok for the simplex thing. but since my breakouts had gone from several a year to about one every couple of years taking the added med was just not something i was willing to do.
Valtrex is a giant royal blue horse pill. it seems to have reduced the blistering and crud that went along with the shingles. yuck. still itches. thanks for the feed back from everyone. :P
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