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

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.

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!

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

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

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

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!

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!)

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.

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!!!

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.

they gave me Nortriptyline for my migraines to take every day to prevent the migraines.
Not a very nice drug, made me loopy and cried oh and i fell down the stairs with no memory of the incident. I lost about 10 days trying to get myself off the drug. I did not enjoy the adventure. But then i responded poorly to all of those preventivitive migraine meds.

hi im new to this so bear with me lol,single mum i have a child young girl who is nrly 5 she was diagnosed with chronic i.t.p when she was 2yrs old but believe she has had it longer than this, i have been looking up on diff ways to try and raise her platelet levels so i have started today to give her aloe vera has anyone had this and tried it ??? and is they anything else u could suggest im in uk and over here the dr do nothing at all so im at my witts end she is getting sick alot to picking up viruses all time from school and out HELP plezzz

When they take my blood, they usually use a butterfly, it is so much easier and it doesn't seem to bruise as much cause it is a finer needle.

For the blood draws (not for IV treatments), some folks swear by the "butterfly." It seems to be a finer-gauged needle, with two wing-like things on it (maybe sticky, to hold in place?). My kid has only had that once, and said it was a bit more tolerable than the regular IV draw. She generally gets her CBC by a finger stick. Other than EMLA, and calming techniques, I can't offer much on the IV treatment sticks. Is there some calming pill they can give him that won't make him so sleepy you can't later get him to the car? I hate giving kids woozy meds if they aren't needed, but you may need a bit of extra assistance in getting him over the needle anxiety. My kid tolerates finger sticks, but for the IV draws or IV treatments, she gets the shivers as they're about to stick. I've had to crawl up onto the bed in the hospital, and sort of coccoon her until it was over.
Norma

Right from when i was little, i never had problems with having blood taken, probally cause i have had so many done right from birth, i got used to them quickly, but like Ali has said, if you try to take their mind off it by giving them something else to do, that may work. I always used to get a teddy bear or a magazine afterwards as well. I also found the EMLA cream never really worked either, maybe thats the trick lol, they want u to feel more pain from the paster being peeled off so that u don't notice the needle.

I honestly hardly ever feel the pain of the needle anymore, The one i had the other day i didn't feel at all. I find I actually have more trouble with finger pricks then drawing blood from a vein, I find those are more painful then a needle.

Other thing is i never look when they put the needle in, i can look once it is in, but never look while it is being put into my vein.

lol yes... totally dislike having to go to the main page... maybe they felt we were too disconnected lol... i find this site takes longer to load etc etc...im way too lazy to log in all the time so I dont think ill be talking much lol ...at least i made an account though...i think oneup has been to busy to switch herself over... I will have to do it for her on reading week )

Hopefully the rollercoaster ride is over...I'm glad he had fun.

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

Jay:

I wouldn't say that multiple cycles cause a better platelet count; more than one round can sometimes cause a longer remission. Usually if Rituxan doesn't work at all, it is not tried again. A marginal response might be worth a second or third try.

I am finding that I hit "quick reply" after I type my response instead of "submit" and I'm losing everything.

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

A positive Coombs test and low platelets might indicate Evans Syndrome.

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..