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  • jpoisson13
24 Feb 2010 20:23
Replied by jpoisson13 on topic cesar
C started preschool about 2 months after she was diagnosed. Luckily, her counts were around 60k her first year.
I talked to the teachers/nurse/preschool admin before the year started about her.
She also had to wear a bike helmet outside or in the gym (since they rode bikes and such), and she was not allowed on the bouncer at school. She actually did pretty well with the restrictions. This year her counts are much higher, and I actually got all teary-eyed the first time she was able to go on the bouncer!

Do the teachers understand how serious ITP can be? Can you volunteer in the classroom and see if it just a rough bunch of kids or if they are all doing activities he should be? I gave C's teachers permission to talk about it with the other kids...i.e. C wears a helmet b/c she bruises easy, you have to careful and so on.
Really, NO KID ever questioned why she wore a helmet!
I love how oblivious and accepting preschoolers can be!
JulieP
  • jpoisson13
24 Feb 2010 20:18
Replied by jpoisson13 on topic ITP not Child Abuse
Did they do a CBC? If not, I would get one done asap. If it came back with low platelets, I'd be having discussions with the head of DCF, the hospital ombudsmon, AND my state representatives. If a child came in with those symptoms it ended up being ITP and they didn't do a CBC, we'd be having talks. Lots of them.

When C started showing bruising on a Saturday, I wanted until Monday to take her in - I was afraid urgent care would think I was beating her. (11k count, so she looked bad!)
The ped said no way, that any doctor would have looked at her, seen her petechie and bruising, done a CBC and immediately realized it was a platelet issue.

Good luck. That's good that you're able to take her in and help out while this gets cleared up.
  • gsh
24 Feb 2010 20:14
Replied by gsh on topic Acupuncture/TCM?
Chrunchybaby - I was also diagnosed when I had an infant (she was 8 months). I totally think this is hormone related for me. Sorry - no experience with acupuncture.
  • gsh
24 Feb 2010 20:11
Replied by gsh on topic Please help me!! I'm SOOO scared..
Joya - the 5 or so days after a pulse of decadron were the worst. Just stick it out and you'll start to feel normal soon.
  • Sandi
24 Feb 2010 19:14
Mothers! was created by Sandi
I just had a conversation with my 21 year old son that left me laughing hysterically and wondering about myself. I just got home from work and he was on his way out the door. This was it:

Chris: I'm going to a show tonight.

Me: Oh, where is it?

Chris: A club in Pittsburgh.

Me: Where in Pittsburgh?

Chris: I'm not sure.

Me: You're not sure? What if it's a bad part of town. People get shot there all the time! Don't you watch the news?

Chris: Mom, can't you ever just say, "Okay, have a good time"! Don't you ever want me to have fun?

Me: Of course I want you to have fun, but I also want you to be aware at all times.

Chris: Oh great. Now you have me looking over my shoulder all night thinking I'm going to get shot.

Me: Well...you should be careful.

Chris: Okay, I'm leaving now.

Me: Okay. I love you - and be careful!

Chris: "And have a good time"!

And he left. After he walked out, it struck me funny. I laughed so hard the dogs were grinning at me. Am I the only one that thinks like this or is it normal Mother talk?
  • Sandi
24 Feb 2010 18:49
Replied by Sandi on topic Hypersensitivity reactions in lupus
Kim:

Have you tried the Fentanyl patches? That is the only suggestion I have besides low-dose Morphine. I really wish I could use something stronger than Vicodin because it doesn't work very well, but I'm afrais I'd be brain dead.

I have a steriod nasal spray script and use it all the time, along with salines. It doesn't help. I also take decongestants - no help. My ENT wanted to do three separate surgical procedures, but said they only work 20% of the time. Not sure I want to go through all of that for little response.

Did you get through the night okay?
  • Sandi
24 Feb 2010 18:43
Replied by Sandi on topic Rituxan
I'm glad she did ok. I only had a fever from Rituxan one time; in the middle of the night after the fourth infusion. Everyone is different though and that is a known side effect.

I'm glad to hear that your work is so understanding - I'm sure that's a relief!
  • tacmom
24 Feb 2010 18:39
Replied by tacmom on topic Rituxan
We re home now. Caitlin has been sleeping most of the time. I think the benedryl really hit her hard this time. Normally it doesn't effect her that much. Her fever is up to 101.5 so I just woke her up to have her take more Tylenol. This is normal, right? At least that's what I'm getting from the Rituxan website.

I got a really sweet email from my boss. I'm out of days but I've signed up for a leave pool where you give up one of your days and then in he event that you need to use them, they are there for us. However, there are rules like you must be out 3 consecutive days in a row for the same thing and a few other rules to qualify. I've taken off on a wednesday & a Friday but let my dad take care of Caitlin when she was out on Thursday. (wasn't aware of that rule or I wld have taken off.). Anyways, my boss is actually encouraging me to take off tomorrow and Friday so that I can qualify. I just don't know if I feel right asking Caitlin's dr to fill out the paperwork when she says Caitlin should feel well enough to return to school tomorrow. I guess I will wait and see how Cait feels in the morning. She just said that I need to take care of Caitlin and not hae to worry whether I would be docked a day.
  • Sandi
24 Feb 2010 18:38
MUCH better news!
  • Sandi
24 Feb 2010 18:34
Replied by Sandi on topic Please help me!! I'm SOOO scared..
Yes - I felt that way. I was very disconnected from myself and didn't care about anything. My sister was having emergency surgery and I just didn't care. It was very weird to feel that way, but it will fade.
  • Sandi
24 Feb 2010 18:31
Replied by Sandi on topic 80+ year olds?
There have been a few people in their 60's and 70's, but they don't post very often. The rest of us would be happy to talk to you!
  • Joya
24 Feb 2010 17:29
Replied by Joya on topic Teenage ITP: been there done that
Hello!

My name is Joya and I am 21 years old and I live in Amsterdam (The Netherlands).. I was just diagnosed with ITP about two months ago. I just finished another three weeks of treatment on dexamethason. Have you ever had dexamethason before? I have a lot of bad side effects and am currently detoxing pretty bad.. Mood swings, sleepy, pain in my whole body etc..

For me it is very difficult to deal with the fact that I have a disease.. I was a healthy person untill 2 months ago and now all of a sudden I have a disease.. Does ITP effect your life on a daily basis? Did you make any adjustments in your life to keep your counts up? Like eating a special dieet or someting? At the moment I am really looking for things I can do to stay as healthy as possible but I don't really know what I can do to keep my counts up except for taking my medicine..

Joya
  • snowgoose
24 Feb 2010 16:56
Replied by snowgoose on topic 80+ year olds?
I just did a search on the old site using the word "elderly", and it brought up quite a number of topics, but I am not sure how relevent they would be to your situation. Give it a go! :)

Hope you can find something helpful :laugh: .

Vanessa
  • snowgoose
24 Feb 2010 16:50
Replied by snowgoose on topic 80+ year olds?
Hi,

You could try searching the old PDSA web site, which is still available for viewing, but no longer for posting :)

Kind Regards

Vanessa :)
  • surfnyc
24 Feb 2010 15:31
80+ year olds? was created by surfnyc
Anyone point me to threads with older people with ITP?
  • tacmom
24 Feb 2010 15:05
Rituxan was created by tacmom
Caitlin is still getting her infusion but I'm guessing she will be done in about 30 min or so. She was doing pretty good but then about two hours ago, she started crying (being real quiet, but tears were streamih down her face) because her stomach was hurting real bad. The dr said that wasn't a normal side effect. She developed a low grade fever so they gave her more Tylenol. They will send us home with steroids as well. Caitlin is feeling a little better but her fever hasn't gone away yet. They only had to slow down her infusion once. She still isn't feeling much better so I hope when we get home, she will start to feel better. Count this morning was 10 and she has some huge black bruises on her back and looks like she was beaten.
24 Feb 2010 13:46
Replied by on topic No Messaging Here???
No PMs/IMs here Tof, unfortunately. However you can email the person - you have to go to their profile and then click on Messages [or put cursor on it] and below that will magically appear Send Email, click on that.

So someone has to open up their email to get anything from you.

Not as easy as being here at the site and just being able to get a PM/IM right here :ohmy:
  • Kim
24 Feb 2010 12:13
Replied by Kim on topic Hate Waiting!!
Some doctors go crazy and admit, but most manage lower counts on an outpatient basis. The times you might experience an admit is upon initial diagnosis, generally when counts are below 10-20k, which might be because the doctor does not know how you'll respond to the low counts. He would be concerned with a person bleeding, so might err on the side of caution and admit as he initiates treatment. If you've worked with this doctor, he'll probably continue to treat outpatient, unless you counts drop to a new low, such as below 5-10k, although some doctors won't admit unless he seeing evidence of soft tissue bleeds. This would include mouth blood blister, or very heavy, non-stop menstrual or vaginal bleeding. If a CBC shows a low RBC or hemaglobin, he may suspect internal bleeding and if you're counts are low, he might admit. It really depends on the doctor, what his risk tolerance is and if his risk tolerance does not compare with yours and you're uncomfortable not being admitted, or don't want to be admitted, this is something you should discuss with your doctor. Get a good feeling on what his risk tolerance is and work out what works best for you and for him. There really is no standard protocol for admitting an ITP patient.

I prefer to be admitted if I show bleeding and my counts are below 10k, or if I'm below 5k and not showing any symptoms, except petechiea. I just think 5k or lower is way to low. But, I have decided that admitting isn't necessary at 5k or below, so I won't stand by that with strong convictions. I think it all depends on what else is going on, how I'm feeling, dealing with the stress of a drop in counts, etc. It's not black and white and I prefer a physician who will work with me in making the decision.

When you're a long standing ITP patient, when you switch doctors, you might experience a doctor who treats you as if you were a new patient, in that he'll admit at a higher platelet count then you might prefer. That's why it's important to maintain a relationship with a hematologist, so he understands you and your particular ITP progression and response to treatments. Make sure you provide any new hematologist with a complete write up of your history, which includes all treatments and response to treatments and how you've managed low counts. If he sees that you are an active, involved patient, he'll be more inclined to trust your judgement.

If you've developed a relationship with a hematologist and he won't trust your judgement, you feel is too aggressive on treatments, hospitalizes when you feel it's reasonably safe and just doesn't seem to want to work with you, it's probably time for a new doctor. Unless he can convince you why he's recommending a treatment, takes the time to explain, it's probably time to find another one. You want someone who helps you manage ITP, because you'll probably be managing it for the rest of your life. You don't want it to rule how you live, causing fear and anxiety. It will be hard enough to manage ITP and the ups and downs of platelet counts, so undue stress of a doctor who is anxious or a bully will just make matters worse.

Regarding nurses -- if you're seeing an oncologist, who treats cancer patients, sometimes nurses are responding to how a cancer patient would be with a count below 50k. Often they will bleed, because they not producing the large platelets an ITP patient produces. The nurse might not completely understand ITP, so when she sees a count of 16k, she thinks internal bleeding. In ITP, the risk of a bleed is higher than if you had normal counts, but it's really still a very low risk, unless you happen to be a patient who does bleed. Therefor weigh the response of an oncology nurse carefully, until she fully understands your ITP diagnosis. I've seen nurses really over blow ITP at counts below 50k, but not below 20k.

Make sure you completely understand your ITP and ITP in general, treatment protocols and work to manage your ITP, as opposed to dumping it completely in the lap of those who treat you. You'll appreciate hanging onto some of the control and I suspect your doctor will appreciate an involved patient.
  • Kim
24 Feb 2010 11:42
Replied by Kim on topic Acupuncture/TCM?
I find it helpful in managing stress and I think it also helped with fatigue and joint pain, although maybe just relaxing for an hour and focusing on that, I had some stress relief, which helped manage the joint pain. It did nothing for platelets.
  • tofer
24 Feb 2010 11:42
No Messaging Here??? was created by tofer
We are not able to message other members here or did i just toatally miss that?
Because i have friends here that i dont know how to reach the other way!!! :(
  • Kim
24 Feb 2010 11:39
Replied by Kim on topic Oh Where Oh Where Is Young Simon?????
He's on Face book and I see he's posting there on occasion. Probably just busy.
  • Kim
24 Feb 2010 11:39
Replied by Kim on topic Oh Where Oh Where Is Young Simon?????
He's on Face book and I see he's posting there on occasion. Probably just busy.
  • tofer
24 Feb 2010 11:38
Replied by tofer on topic Acupuncture/TCM?
Accupuncture rocks but i wasnt using it for my counts i used it for relaxation and some residual post chemo neuropathy. Great stuff.

I just love the holestic view that they take with accupuncture... :kiss:
  • JAB7955
24 Feb 2010 11:30
Promacta was created by JAB7955
My Mother was recently diagonsed with ITP. She has Chronic Lymphatic Leukemia and has been through several rounds of chemo treatment. The doctors do not know if her ITP was induced by chemotherapy or it was dormant and raised its ugly head. She has been treated with with steriods, retuxin, NPlate, and had her spleen removed. Nothing is helping. She has now been taking Promacta for past three days. She still is not doing well at all. How soon should we see a response from the Promacta?
  • eklein
24 Feb 2010 11:26
Replied by eklein on topic Please help me!! I'm SOOO scared..
Joya,
Yes, one or two other members of this forum have posted they they experienced the exact same thing, an out of body kind of feeling. It went away as the drug wore off. I never had dex but I wanted to let you know in case they didn't get to post soon. Erica
  • tofer
24 Feb 2010 11:23
so what supplements are you taking?
are you taking any of those powered supplements for strength & energy?
Tautine & creatine could easily be causing your bp to be to high... that N.O. supplement has huge amounts of chemicals in them.

You need to be careful what you put into your body right now...
24 Feb 2010 11:09
cindyduncan wrote:

dude im a powerlifter

A power lifter and you were a smoker?!

So has your blood pressure come back down? If not I'd be a lot more concerned about that than a platelet count of 70-80k.
  • Joya
24 Feb 2010 08:22
Replied by Joya on topic Please help me!! I'm SOOO scared..
Hey everybody..

I finished my dex treatment on monday.. So now it's detox time..

I had a question.. Has anyone of you ever had the feeling they were mentally weird or something from the medicine? I feel like I'm num to everything.. Just lying around, watching tv not caring about anything.. Unable to follow conversations.. It feels like my body is here but I'm not.. Like my innerself is slowly dissapearing..
I know it sounds a bit weird and stuff.. But I was just wondering if anyone of you ever had anything like this..

Joya
  • snowgoose
24 Feb 2010 07:38
This update for today is brought to you by the numbers 5 and 3. As in the number 535, which is today's platelet count. Down by another 100 or so :) ! And by the letters,D,T and C, as in Downward Trend Continues!

I saw my Dr today, and she was pleased that op cellulitis infection seems to have cleared :) .

Op site is still painful, but she said it will take about 6 weeks to heal.

Thank you for your encouraging words Sandi, Julia and Linda. I am beginning to feel better, although very tired.

Off for a MRI of swelling in leg tomorrow, and trial visit on Friday, it is neverending ;) !
:)
  • Kim
24 Feb 2010 03:04
Replied by Kim on topic Hypersensitivity reactions in lupus
I am not doing well....I made a BIG mistake tonight. I was not feeling well, my back and chest were hurting, which seems to be happening more lately. I could not lay down without increased pain. I took a Percocet and because I was concerned with taking a Percocet, along with a Zrytech, I skipped the Zrytech. I have no idea if I could take both and Now I'm awake without pain, but with intense itching, head achy and short of breath. I think I'm having a more severe reaction to the Percocet then I have had in the past. I can usually manage it without to much itching, but tonight is especially bad and I'm up at 2am watching TV, feeling miserable and worried, so decided to open the computer and check the forum and hopefully be distracted from how I feel. This is not good...I don't think there's a pain med left, which I can take. Can't take Tylenol or Aleve either, because they also cause itching. I have no idea what the hell I'm going to do for pain. I'm really worried about this and not sure I'm going to manage the stress of it very well.

You're right Sandi...it never ends and it sucks. I'm feeling the stress today of this crap and this middle of the night upset isn't setting well with me. I have to keep occupied with something or the itch and worry will make me insane. I took a Zrytech to see if it will help, but I actually think it feels worse in the last half hour since taking the Zrytech. I don't know if I should take some benedryl. I can't stand this anymore.... It's making me sad.

Regarding your sinus issues, have you tried a nasal antihistamine spray? It seemed to help me, although it's disgusting to spray in your nose and leaves a terrible taste and feeling in your mouth and nose. I think I'll go spray some now and see if it helps any with the itchy feeling I have in my nose and mouth.

Kim
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