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  • 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
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
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
  • tofer
10 Feb 2010 10:17
Replied by tofer on topic Nortriptyline
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.
  • solentgal
10 Feb 2010 08:51
child age 5yrs with chronic i.t.p was created by solentgal
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 :P
  • Angel85
10 Feb 2010 06:16
Replied by Angel85 on topic Needle phobia -- any suggestions?
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.
  • juliannesmom
10 Feb 2010 05:44
Replied by juliannesmom on topic Needle phobia -- any suggestions?
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
  • Angel85
10 Feb 2010 02:58
Replied by Angel85 on topic Needle phobia -- any suggestions?
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.
  • itpdaughter
10 Feb 2010 02:16
Replied by itpdaughter on topic Staying logged in
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 )
  • lucidawn
09 Feb 2010 22:57
Replied by lucidawn on topic Dougie's School Trip
Hopefully the rollercoaster ride is over...I'm glad he had fun.
  • lucidawn
09 Feb 2010 22:53
Replied by lucidawn on topic Tim at 21k, Nplate started today
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.
  • alisonp
09 Feb 2010 18:55
Replied by alisonp on topic Dougie's School Trip
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 :cheer:
  • dbishop
09 Feb 2010 18:35
Replied by dbishop on topic Dougie's School Trip
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
  • Sandi
09 Feb 2010 18:35
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.
  • Sandi
09 Feb 2010 18:30
Replied by Sandi on topic Staying logged in
I am finding that I hit "quick reply" after I type my response instead of "submit" and I'm losing everything.
  • dbishop
09 Feb 2010 18:27
Replied by dbishop on topic wait & watch at 26K
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
  • Sandi
09 Feb 2010 18:23
Replied by Sandi on topic Newly Diagnosed
A positive Coombs test and low platelets might indicate Evans Syndrome.
  • alisonp
09 Feb 2010 17:07
Replied by alisonp on topic Needle phobia -- any suggestions?
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 :)
  • nadia
09 Feb 2010 16:01
Replied by nadia on topic Needle phobia -- any suggestions?
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.
  • dots
09 Feb 2010 13:27
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.
  • Caroline109
09 Feb 2010 11:49
Replied by Caroline109 on topic Staying logged in
Okay-thanks-I thought I had replied but the reply may have disappeared into the sky. 5 hours is better than nothing.
  • Jay
09 Feb 2010 10:39
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..
  • Angel85
09 Feb 2010 02:32
Replied by Angel85 on topic Dougie's School Trip
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!
  • wendyjlau
09 Feb 2010 01:49
Replied by wendyjlau on topic Next step for Caitlin-dr's recommendation
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.
  • farida
09 Feb 2010 00:41
Replied by farida on topic Newly Diagnosed
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
  • Sandi
08 Feb 2010 22:24
I really hope she has a good Rheumatologist. It can make all the difference. I've seen several, and some of them don't know what they are talking about.

My very first Rheumatologist (prior to diagnosis), dismissed me without doing any blood work because he said I "looked fine". I told him all of my symptoms plus prior ITP diagnosis and because I didn't have joint swelling, he told me I was okay. My Hematologist was the one who ordered the ANA and found it elevated. I was referred to another Rheumatologist who monitored me every 4 months and things went downhill from there. BUT - he listened.

Good luck Pauline...I know you are going through rough times with Caitlin right now. I truly hope things get better!
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