Regarding the needle phobia, its been five years. I guess he just finally learned to deal with it. He decided that he was going to just have to deal with it because every week he was getting draws and infusions, and with the emla it was worse than without it (because the emla made his veins collaps). So, he just one day said he was going to put up with it without a fight. It took five years though. It has been a four month intensive week after week infusion, this time, though, and the fact that he is almost 17 now. I think that helps.

Hi Deanna

Dougie is due back at the hospital next Monday - I'd forgotten that it was the half term holidays next week though, and Dougie and one of his brothers are supposed to be staying with their Grandma, so I might try and rearrange his appointment for the week after.

Dougie has been complaining about having a sore throat today - its really annoying that I am now noticing all these stupid little viruses the kids get that never used to bother me at all before, just because they seem to have an effect on platelets. He seems fine though, still no symptoms..... long may it last!

Hows Devyn doing? Still got lots of bruises? I hope that he is well and that you are not worrying about him too much - having this illness at his age must make you want to cover him in bubble wrap!

Ali

I'm glad he had a good and safe time. Even better that he has no symptoms right now!!! When does he go for his next CBC

Deanna

I think that no matter what route you go, you will always question yourself. We too are doing the watch and wait approach with our son Devyn who is almost 2 and a half. At this point i am comfortable with this approach, but no matter what, the worry i have is overwhelming at times. You have to be comfortable with the decisions that are made. If this approach make you very uncomfortable then i would definitly talk to you Dr about it.

I think that many people have benefited from doing the watch and wait, especially if they are not very symptomatic...as we all know this disorder is different in everyone.

Deanna

Hi

Your post makes me so glad that we don't have this problem; it must be horrible for you and your son.

My experience is very limited and I am not sure it will be much use, but I find that thumb pricks are much more acceptable to my son than drawing blood from a vein, so he hardly ever has anything else now. Also we found that EMLA cream made things worse; my son says that pain and the anticipation of the pain from getting the plaster bit off is actually worse than the pain of the needle. In the hospital, they always have a nurse with a "Where's Wally?" book that demands lots of concentration on the book rather than the nurse with the needle on the other side!!

Other than that, we ALWAYS go for a cola or a McDonalds or something after he has been to the hospital, and that seems to help!

Hope you find a solution

Ali

Hello, so sorry to hear about your sons phobia. My son was only diagnosed just under a year ago but we have had 4 weekly bloods and he has got to the point that he now says "don't let them give me a needle please". He gets his arm frozen the creams give him a skin reaction. I am totally honest with Zac and only tell him on the morning of his blood test and we have explained even at this very young age that he has special blood so he has to have these tests done. Can he have hypnotherapy for relaxation my daughter had this for a dental phobia it is amazeing the results.

My son, nine in a couple of weeks, was diagnosed nearly seven years ago. His only treatment has been IVIG. When he was little we had to hold him down to put in the IV and to force Tylenol; over time (and with Tylenol Meltaways!) it became easier -- even easy sometimes.

He was hospitalized last January for a five-hour nosebleed -- he got an infusion and had to stay overnight; we usually go to a clinic for his treatments. In addition to getting the infusion, he was sick and miserable (fever, headache, body aches -- the virus had caused the platelet count drop which in turn caused the nosebleed) and couldn't sleep.

He now associates every medical procedure with the hospital (it took a half-hour to get a throat swab to rule out strep a few weeks ago). He's totally resistant to getting stuck, although he'll get a fingerstick without complaint. Even after an hour with an entire tube of EMLA on each arm, he freaks when he sees the needle, folds up his arms, and cries. He's too heavy to hold down, and that makes it more traumatic anyway. He's been known to run around the office and hide. We're going to try guided imagery and relaxation techniques, but:

Has anyone else dealt with this? How did your kid finally end up cooperating? I'm terrified his count will drop without our knowing it (he's not always symptomatic), and then another catastrophic nosebleed will land him in the hospital again.

Sorry so long, but I'm at wit's end.

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