Okay-thanks-I thought I had replied but the reply may have disappeared into the sky. 5 hours is better than nothing.

I have an extreme case of refractory itp. current count 3k and going on 10 years of no success of getting and keeping my numbers up. about to start rituxan. interesting that some people need multiple cycles before numbers react favorably..

Thats fantastic that he had such a wonderful time and had no problems!! I'm happy for him that he was able to have an enjoyable time during his trip!

She was back at school and doing normal sports activities after 1 month. There have been no restrictions since. She plays hockey for school and that's about as rough as she can get! She did have some pain in her spleen area for about a year, especially after eating but it was a niggling pain rather than anything serious.

She hasn't had any issues with infection but the doctors are more cautious if she does get sick and we always take her in if she gets a fever. She got bitten by a dog last August and because of being spleenless the doctors treated it very seriously. Apart from that, everything has been as normal.

sadi what make different if the combos test positive, as you know my son's was positive on last march and then negative on may , he got platelts transfusion on july his comos test became positive , and then negative again, do you have any asnwer for that

Thanks...I didn't realize the article was an older article. I was doing a google search on splenectomy in children and came across this one. I think alot of the articles I read must have been older because it says that they usually stay in the hospital for 3 to 5 days after the procedure is done and I thought this was done almost like on an outpatient basis since it is usually done lap??? (can't think of how to spell right now). If she will be out of school that long, then I will have to figure out what to do because she will be over her days that she is allowed to miss per semester. (They are not allowed to miss more than 9 days per semester and that includes excused absences. Her half days don't count against her, thank goodness.)

I think Caitlin is about to get sick again. Complaining about her stomach and head hurting again. Seems like this has been a common complaint for a few months now! She has ALOT of petechaie under her eyes and on her chest. This seems to be where she usually gets petechaie first and sometimes it spreads to other areas. I wish the rheumatology visit was tomorrow, not a week from tomorrow! I know it will be here sooner than I think though!

Well, despite all my panicking, Dougie came back unscathed - despite quad-biking, high ropes, assault courses, zip-wires, climbing walls, etc. His clothes might never recover from the mud, but he had a brilliant time and loved every minute. He even said the food was great, which has to be a first for a school residential trip! He was really tired all weekend - but then I think his dorm had spent the nights talking rather than sleeping!

He hasn't got any symptoms at all at the moment. Long may it last. Its lovely to be enjoying some worry free time.

Thanks to everyone who supported me during his recent dip. I am hoping that I will panic less if it happens again. I am still hating this roller-coaster thing!!!!

Ali :lol:

Hope prednisone is working.

Our late granddog had to be on it a couple times when a puppy - only side effect she had was she didn't hurt. Thank heaven whatever it was passed and she never had to go on it again. One of our grandcats had to be on it for a bit too without side effects.

Sandi hope your baby is doing well.

Our cat is Killian Cat at Target's pharmacy and Killian Cat at the human pharmacy nearby. She's so special we can't just be with one pharmacy

Doing research now before I take Caitlin to see the drs next week (rheumatologist & hematologist). I am reading as much as I can to try to see whether splenectomy is really the correct "next" step for us. Splenectomy really has a high complete response rate in children. Then there are a couple who have a partial response. It looks like it is almost rare for children not to have some type of response from the majority of the articles that I've read so far. However, I did come across this particular article and wanted to know what you think: pediatrics.aappublications.org/cgi/content/full/111/1/87

Caitlin really doesn't have a good response to IVIG. I know this is just one article and it doesn't necessarily mean that it won't work for Caitlin. So, I wanted to ask...for those of you who have had a "failed" splenectomy...did IVIG work for you prior to having the surgery?

Caroline I think the max log-in time is 5 hours. Found the thread in the PDSA News & Forum Suggestions section - yes, Sandi said it was changed to 5 hours:
www.pdsa.org/discussion-groups/17-new-forum-information/425-logging-in.html

That and then when you do log on the discussion group page but once log in is completed it takes you to the main PDSA page instead of the discussion group page..... :S

I can't wait to see how this season develops. I'm wondering if the creators will tie the show to the lost city of Atlantis or if this is like the Bermuda triangle. I also want them to clarify how were these people all selected, all along they've been showing clips of how each of these individuals were all connected prior to boarding the plane. What is the thread that tied them all together. So many questions and not enough info given.

Wow, I probably would have jumped at splenectomy if she had problems with her periods at that young of an age. That is just too young and poor Katie! Caitlin is 11, almost 12 and hasn't started yet, but my 13 year old just started two months ago so I think Caitlin probably has at least another year before we have to worry about her starting.

One other question...do you remember how long Katie had to wait before being able to participate in active sports? Caitlin's dr said two months, which is ok with me. I also wonder...can they participate in any sport without restrictions if they don't have a spleen?

Now that I think about it, I remember Caitlin said that she said it felt like a "sting" because she could feel the meds going through her arm. She did have headaches usually 2 or 3 days after getting her shot, but they were not nearly as bad as the headaches she got from IVIG. The headaches went away quickly once I gave her Tylenol. I had to write down every symptom that she had, plus any meds/dosage that we gave her since we were on the study drug. I don't really remember many of the other symptoms, but I think she had a few occasions where her joints started hurting but that happened maybe only two or three times total in two years. The only thing I really questioned with Nplate that the study coordinator did not really think was related, was that Caitlin seemed to be much more sensitive to the sun. She would get sunburned quickly and they would last for days, which was weird because before...she tanned quickly and if she got a sunburn, it was gone by the time she woke up the next morning. (Always used tons of sunscreen & reapplied it every hour so she "shouldn't" have been getting burned.)

Katie officially had ITP for 2 years but most probably longer than that - it just hadn't been diagnosed. It was my mum who suggested the diagnosis when we went to visit her in England. She took one look at Katie's bruising and said ITP. She worked in the Chidren's hospital.Sure enough her blood tests showed ITP. The only treatments she had were IVIG and Prednisone. WinRho and Rituxan weren't available here. She had terrible headaches whenever she went below 20 and had way too many CT scans. She was also dxed with precocious puberty at 7. She had one period that lasted 41 days which was not pretty.

Another girl went through the same thing at the same time. They had their splenectomies together.

It's a very old tricyclic antidepressant. Tricyclics were used before SSRIs (like prozac) and are used less often now because of their side effects. However, usually if you take them for headaches, you're taking them at a very low dose so the side effects are less of a problem.

I haven't taken nortriptyline, but I have a friends who've taken other tricyclics for headaches.

Lily

Is there a way to stay logged onto the site so you don't have to sign in/log on every time you come to the new site? With the old one, I could stay logged on all the time, which I liked.

Wendy-thanks for letting me know about Katie's splenectomy being a success! May I ask how long she had ITP and what treatments she tried before splenectomy. I really think we re headed in that direction but I think we need to try rituxan first to be sure we ve tried everything.

We got back late last night from my daughters' 2-day competition. My older daughters team won 1st but they didn't have many teams against them. Caitlin's team won 2nd and a paid admission to US Finals! I am not sure if the team will go yet because we'd have to travel to either Orlando, Fla or Las Vegas for this competition and that alone costs alot. Due to Caitlin's competition season not ending until the end of April, we won't even consider scheduling the splenectomy until May because the drs already said she can't do any cheer for 2 months after the splenectomy. This is another reason I want to try Rituxan since she now has a break until mid March for her next competition.

Thanks, Joan.
Norma

Katie had her splenectomy when she was 9 (she's now 13). She is very active and ITP was really affecting her quality of life. It was a very tough decision to make (and we have less choices here in Hong Kong - no Rituxan). She responded well to steroids but couldn't take them long term due to endocrine issues. IVIG lasted around 5 days for her so it wasn't worth it. She often had wet purpura (she would bleed in her mouth just from eating normally and often had blood blisters). She went into remission within days of the splenectomy and her count has never dropped below 400 since. She had some bleeding issues during the operation (LAP) and spent 2 days in the PICU. That was scary to say the least. It certainly wasn't a walk in the park.

When she tells people about it, she always says 'I got my life back'. Of course, we worry about infection but all her vaccinations are up to date and we are vigilant. ITP used to dominate our lives with the endless blood tests and trying to predict her counts, not to mention the restriction of activities. It no longer does. I'm not in any way suggesting you should decide on a splenectomy but I just wanted you to hear from someone with a teen for whom it worked. If you want any more information or if Caitlin wants to e-mail Katie, just let me know.
Wendy

Can't speak to the drug. But have you been to a dentist and checked for temporomandibular joint (TMJ) Disorders? Your describing two of the major symptoms of it. I wore a bite split at night for years. Interestly when my Thryoid disease was under control, I didn't need it as much.

Tim is a lot older than my son, who will be nine in a couple of weeks. How did he get over his needle phobia? My son's is very bad right now -- I guess six and a half years of IVIG and ITP have taken their toll. Did he just get older? More rational?

We're beginning to try guided imagery (relaxation recordings on an iPod), but haven't used them yet. One put him to sleep at bedtime, though, which I suppose is a good sign.

I'll start a thread on this in a couple of days, but since you mentioned it, Donna, I thought I'd ask.

And good luck with the Nplate!

You know things are bad when prednisone is the best answer!!!!! I hope it works.

I hope your next round gets you a real long term remission.

I'm getting closer to giving up, not quite yet but it could be soon if the IVIG doesn't last more than a couple weeks. I gave up pretty much all my favorite sports and activities for the last few years because of my crappy counts and painful bruising and stupid bleeding. It would be nice to get back to normal if that could happen.

He has overcome the phobia-interestingly. He went for a walk after his recent very bad experience with IV's last month. He said he thought about it, and that's when he wanted a port. When they said he couldn't get one, he realized that the emla was causing his veins to collapse, and so decided after that no more emla. So, he gets all his IVs and draws cold turkey now. So, the NPlate went well, he said it hurt, but not too much. He doesn't seem to have side effects yet. Did Caitlin have any?

Norma,

Here's the link to donate to PDSA a through Amazon. The Amazon account was established at the very beginning of PDSA when the site was known as ITP People Place. I'll see about getting the link back on the site.


www.amazon.com/exec/obidos/redirect-home/itppeopleplace

Joan

I have ITP and several other autoimmune issues. I have awful headaches and facial pain and after being cleared for everything else Neurologist put me on Nortriptyline - right now only 25mg at night. Anyone have any experience with this drug? It seems to be helping but I am nervous about it long term.

I hope Nplate will be a treatment that works for him! I hope he doesn't get any side effects from it. How did Tim handle his first injection since he used to have a phobia of needles? Caitlin was so scared at first then she realized she could barely feel anything. I hope he gets a response at lower doses rather than having to go all the way up to the max.

No i'm not really a fan of it, gotta say, i never really got into that show, it just doesn't appeal to me.