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TOPIC: Counts with Promacta

Counts with Promacta 6 years 1 week ago #37769

  • Slammed
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Sandi,

You're right, 35k is still in the safe zone. Since starting on Promacta in late May, this count is the lowest so far. So, this count came out of no where and I wasn't expecting to see it, I was thinking around 50k's. Two weeks ago, I was at 63k and then before that, 66k. When I'm super stressed, which I am right now, my counts DO go down by quite a lot according to my journal. So, it makes me nervous/scared that maybe Promacta might stopped working for me. But, I need to calm down and going to my hema on Monday to tell him I want to do the wait and see approach...which I think my platelets will rebounce back if I can get my stress under control.

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Counts with Promacta 6 years 1 week ago #37770

  • luca
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Slammed: You are one of those people who are very sensitive to Promacta; I wish I could get the counts you get on only 25 mg! 35K sounds bad to you because you have had much higher counts on low dosages, but you still have the option of increasing the dose if necessary (which I doubt you will need to do!) So far I'm staying in the 70K range on 50 mg., but I actually went up to 144K my second week on the drug, so I guess we all see some remarkable numbers at the onset of treatment. Don't "stress out" over your "stress;" you are still in a great place relative to uncontrolled ITP!!!
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Counts with Promacta 6 years 1 week ago #37772

  • Sandi
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You're going to see fluctuations. If 50k is the goal and your dose is adjusted that way, it would be impossible to have a count of 50k every week. 20k in either direction still seems like good, stable numbers.

Luca is right. You are on a low dose and raising it is an option. There is no reason to think the drug will stop working at this point.
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Counts with Promacta 6 years 1 week ago #37773

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Thank you Luca and Sandi for your encouraging advice. I was thinking that I can always get the dosage to increase to 25mg. Personally, I don't mind being in the 30's-60's range with 12.mg, but my hema rather plays it safe...which sometimes frustrates me...then I tell myself, it's best to be safe than sorry.

Sandi, I wished you were a hema...I would love to have you as my dr! :)

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Counts with Promacta 6 years 1 week ago #37777

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Slammed,
Sorry that you're upset about your count. I agree with Luca and Sandi, that's pretty good for the low dosage. I remember when I was down in the low 30s on 25 mg. I got upset and it was for no reason. I went to 50 mg. and my count has been fine ever since. Stress is really bad for me too. When I have a meltdown (stress-wise) and have a CBC within a few days, I always have a drop. Cheer up! There is always another day and things will get better.

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Counts with Promacta 6 years 1 week ago #37779

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This morning, I see some petechiae on my arm. But, I'm going to say, screw it! My gums look less swollen and red. So, that's a good thing.

Sandi, Luca, and dmblank, you are all right. I can always increase to 25mg. Let's see what my hema says on Monday. I'm going to ask him if he can give me a week and see if my count can rebounce back on their own. I just need to get my stress under control. Haha...

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Counts with Promacta 6 years 1 week ago #37782

  • Sandi
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My sister used to tell me that managing stress is a full time job. She was so right about that!

I don't know any way to reduce stress. It's always there no matter what. I guess the way it's handled internally can make a difference, but I've never been good at that either. The older I get, the harder it is to control it.

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Counts with Promacta 6 years 1 week ago #37783

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Sandi wrote: My sister used to tell me that managing stress is a full time job. She was so right about that!

I don't know any way to reduce stress. It's always there no matter what. I guess the way it's handled internally can make a difference, but I've never been good at that either. The older I get, the harder it is to control it.


My husband recommends that I seek professional help to manage my stress. I definitely don't want any meds for it. And personally, I'm so tired of dr's appointments that I don't want to deal with any more dr's.

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Counts with Promacta 6 years 1 week ago #37801

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Hi everyone, I just found this awesome site. My brother has ITP and getting ready to start Promacta. He is back in the hospital and I guess when his platelets go up he can leave. How are you doing on it and is anyone a firm believer that eating a good diet can help keep your immune system up? The first time in hospital back in 1999 we almost lost him after 7 months, ICU, infections, and Spleenectomy. Since then he thinks he is cured and didn't so anything to help prevent this from happening again. The Dr's don't even coach him and what he should do. But that is another topic.

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Counts with Promacta 6 years 1 week ago #37802

  • Sandi
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Beth - there isn't much anyone can do to prevent ITP from recurring. A cold could cause it to return. There isn't much his doctors can tell him in that regard. The most important thing he has to do is keep up with his vaccines because of the splenectomy.

Diet doesn't really help, but it doesn't hurt to eliminate some things and see if it makes a difference. There are certain diet changes, such as going gluten free, that have helped some people. It's all trial and error since people respond to different things, and it can take a long time to figure it out.

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Counts with Promacta 6 years 1 week ago #37814

  • jeffrey71
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Beth,

Sandi just gave you great advise. I would also like to add a couple of points. Keep a positive attitude. It helps. We all struggle with that at times, but keep the positive in front. Eat well. Cut the junk out. Give the body the proper fuel for functioning. Do not eat food that taxes the body, and the same with drink. Exercise and stay fit! Great for the mind and body! Keep the body ready to fight when it has to. Lastly, control the ITP do not let it control you!

Good luck to you and your brother! He is fortunate to have you in his corner!

Jeffrey

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Counts with Promacta 6 years 1 week ago #37819

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Count is at 22k today, liver enzymes is ok. Kids have me so stressed that my blood pressure got a reaction from the nurse. It was 160/80!!! Normally, I'm at 105/60. She asked me if was ok,since my blood pressure is never that high. All the stress is getting to me, I had a emotional break down in my hema's office today, which has never happened before. He did suggest to me that I go to a psychiatrist for help.

Anyways, back to my ITP...I'm really surprised my hema didn't freak out with a count of 22k...in the past, at this number, I will be on steroids again. But, he is going to do the monitoring approach...since I told him I REALLY do thing it's stress related, due to my case. He says, he's "ok" if I'm in the 20's for now, even 15k, but anything below 15k, he would need to increase my Promacta or switch me to Nplate or do chemo (which he wants to do a bone marrow first). Of course, he still remind me about a splenectomy...he will always want my spleen...and he told me he always laugh he re-reads his notes that I said NEVER. And get this, normally, in the past with a count of 22k, it's weekly CBC's...but this time, it's 2 weeks...shocker!!!

He also made me email the nurse a list of all of my vitamins I'm taking...which the nurse called and told me he wants me to stop ALL of them ASAP. Hmmmm....we shall see...I already stopped taking iron and bought new multivitamins without iron...but now, no vitamin supplements at all....

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Counts with Promacta 6 years 1 week ago #37821

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Slammed,
Well, I'm glad that you seem to be okay with your circumstances. Glad your hema is okay with the count too. Remember that when you have breath, you have hope. I know that things are going to be fine. I'll be praying tonight and asking God to raise your count, keep you safe, and totally heal you. I do believe that God listens to our requests and He will honor requests. I trust God with my health. If I remember, you live in Houston. Have you ever been to Lakewood Church on I59? Joel Osteen's mother was healed of cancer when doctors told her she could go home and die. She is still alive years later and has a booklet and cd on her story and how she prayed to be healed. When I was in the hospital, I took the cd and book with me and put earphones on and listened the entire time I was given two rounds of IVIG. My strength was super in the hospital and my attitude was the best. If you'd like a copy of the booklet and cd, I'll be happy to send you one. I have extras that I bought because I believe so strongly about it. My email is dmblank@sbcglobal.net. Send me an email and I can mail it to you. That goes for anyone else who would like a copy. Take care and let me know if you want one.

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Counts with Promacta 6 years 1 week ago #37823

  • Sandi
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Slammed:

I think therapy is a good idea. It couldn't hurt. I remember the days of kid stress. I had three. How old are your kids?

When my kids were young and I was going through the worst of ITP, I had days when I doubted myself and the ability to keep going. My husband traveled during the week (still does), so I did it alone. I worked full time and all of my kids were in after school activities. I'd literally pull in the driveway after work and they would all come running out and get in the van. Off we'd go and get home around 8 or 9, then have dinner.

Those years are a blur to me now and I don't have many memories of it (thank goodness for pictures). I just remember feeling stressed and inadequate all the time. I felt like I was failing everyone because I always felt that I couldn't keep up. I always had too many balls in the air.

I don't know what your kids are doing to cause stress, but if I remember correctly, it was the fighting with each other, keeping up with homework and activities, and dealing with daily general problems (like missing the bus) that did me in. I thought I'd never get through it, but I did. And it goes fast. Not so much when you're caught in the middle of it; you realize that later on.

I have one still living at home and believe it or not, I miss those days. I look back now and laugh at the stupid things that were a big deal then. Despite ITP and the meds and the work and kid stress, I was so much better off than I am now. It's hard to enjoy things sometimes when you're in the moment, but it is where you are and all you can do is make the best of it. Life is too short not to.

I hope things settle down for you soon.

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Counts with Promacta 6 years 6 days ago #37825

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Sandi,

I have a 7 (girl) and a 9 year (boy). Yes, it's the stress of being a mom, school stuff, full time job, after school activities, homework/projects, BUT the MAJOR stress in my life is my daughter. She has OCD, anxiety, and severe separation anxiety. Most of the time, we get through it, but for the past several weeks, she has taken over...she's not sleeping at night, she is very hard to deal with...school is calling all the time because she is not being cooperative. It's trying to re-assure her all the time...but she won't tell us what she's worried or scared of. We are trying to work with the school and getting her professional help. Her grades are good so far, but I'm worried that because of these issues, she's out of the classroom in the couselor's or principle's office often that eventually, her grades will suffer. She goes through stages where it will pass. But, lately, it seems like she's can't control it. I feel so helpless. I don't know what else to do to help her. I don't want her to get medicated, but I think, it's at the point that maybe medication MIGHT be the answer for her to be happy/functional.

Yesterday, I was on the phone with her school couselor, checked my email, had an email from my son's teacher saying he's acting up in class...then the hema's office called with my lab results...I'm feel it's not raining, but pouring down. You're right, sometimes, I feel like I can't go on anymore, but the thought of leaving my family...the promise of the future with my husband...and hopefully future grandkids...keeps me sane.

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Counts with Promacta 6 years 6 days ago #37826

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dmblank,

Thank you for the offer, but I already have it :) . I sometimes watch Joel Osteen on TV at the gym. He is an amazing speaker. He is so positive and you can't help but be too! My husband told me the other day, life can't be full of sunshine all the time, then all we have are just deserts. I laughed at him and told him he's so corny...but, when I thought back to it, it's so true.

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Counts with Promacta 6 years 6 days ago #37827

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Slammed,
I can really feel your anxiety with your children. I taught for 38 years in elementary, high school and now I'm a college professor two days a week. Believe me, in all those years I've seen lots of kids and things happening like your described. Fortunately, I have, in most cases, seen improvement in those children as they get older. Sounds like you are a caring mother who will do whatever it takes to get things right. Just know that things will get better.
Best wishes to you!

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Counts with Promacta 6 years 6 days ago #37828

  • Sandi
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Slammed:

I went through something similar with my son. My co-workers used to tease me that the principal had my number on speed dial. He was always in trouble for the stupidest things. The school had a zero tolerance policy and they really took that to the extreme. He was talking in the lunch line, he tossed a piece of lettuce at a friend, he wore white shoe laces with his black boots, it never ended. He constantly had detention and suspension and as a result, he hated school. It was a fight to get him there and that gets really hard when they become bigger than you and you can't drag them out of bed.

I used to go to bed every single night feeling like a failure as a parent. I don't think I ever had a day when at least one of the kids didn't have a problem. It was even worse if two or three of them did. Tough years.

They all grew up just fine though so all of the hard work paid off. Therapy might help you to be able to deal with your daughter more effectively, and it might help you to deal with your feelings about it. As parents, we tend to take the behaviors of our children personally, as if everything they do is our fault somehow. The guilt leaks in and makes it ten times worse. You'll get through this, one day at a time.

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Counts with Promacta 6 years 6 days ago #37829

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dmblank,

She has gotten better as she gotten older. Last December was the first time that she finally stopped crying for hours when we dropped her to school (at 6 years old!!!). I have always warned her teachers the beginning of each school year of her behavior. She do not adapt well to changes at all...she strive on routine, structure. You have to mentally prepare her for the day. And because of these issues, other kids make fun of her and thus, she doesn't have much friends. While her brother on the other hand is "Mr. Popular". She wants to be glued by his side all the time in school and that's not possible. When she gets extremely upset, her teacher does pull him out of his school so that he can try to calm her down. He gets embarrassed having to hug her and kiss her.

Hopefully, we can get the right help for her and be a happy family again.

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Counts with Promacta 6 years 6 days ago #37830

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Sandi,

How do you deal with the school calling you all the time? School are so inflexible now days...the teachers are over-worked, thus, having less time and patient for "special" needs students. Currently, she's in the gifted and talented program and making straight A's. She loves to read and draw and I want her to continue to love school. These incidents are adding up fast and I don't want her to hate school.

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Counts with Promacta 6 years 6 days ago #37833

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My count last week was 53K with Promacta, and will get re count this week.
diagnosed 4/12

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Counts with Promacta 6 years 6 days ago #37834

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amberyard wrote: My count last week was 53K with Promacta, and will get re count this week.


That's awesome Amber! Are you on 50mg? Things are looking up for you!! :)

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Counts with Promacta 6 years 6 days ago #37835

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Slammed,
Hope things work out for you.

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Counts with Promacta 6 years 6 days ago #37839

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Slammed and Amberyard; It looks like we're all on the "Promacta rollercoaster!" After 3 weeks in the 70's, my count has dropped 15% to 52K. I know we have all said anything above 10 or 20K is fine, but when the numbers start dropping--apparently without reason and drastically at that--I can see where it sends one reeling! Not sure what is going on physiologically (and haven't read anything in the Promacta literature that explains the variations) but I suspect that our bodies are coming up with new ways to "attack the intruders." Slammed, I'm sorry to hear about your being in the "meat grinder" (with family, work, health and child issues) and I know that it can feel really frightening when balancing so much seemingly by yourself (although I love your husband's comments!). My kids are now grown, I'm semi-retired,etc., but your comments remind me of how intense life can be; but somehow we get though it and remember--mostly--the good times. So, hang in there and know that we are all thinking about you!

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Counts with Promacta 6 years 6 days ago #37843

  • Sandi
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Slammed:

All I could do was handle one situation at a time, one day at a time. I remember a few instances that were funny, in retrospect.

One day I was very engrossed in my job. I think a bomb could have exploded and I wouldn't have known it. I worked with large numbers and mistakes cost people money, so I had to be exact. Anyway, I got a phone call and the woman on the other end began to tell me that Christopher was sick. My first thought was, "Ok, who is Christopher and why are you telling me this"? Oh, duh, that's my son!

Another day I was also very stressed and got a call from my son's middle school teacher. I'd been having problem after problem all day long and was on high dose Prednisone, so cranky I was. The teacher told me that on his way out of class that day, he walked past her desk and took a sheet of stickers. I said, "Did you ask him to give them back"? She said, "Yes". Did he? Yes. Okay, so what is the problem? She went on and on about those stickers and suddenly, it struck me funny. It was just so absurd. I'd been battling major problems and she was all worried about a sheet of stickers. I couldn't stop laughing and she hung up on me. NOT the best way to have handled that, I know, but really? Sounds like she handled it just fine. She didn't need me.

On to high school, and this was a typical Christopher situation. He'd had an argument with another student in the cafeteria, and they were arguing back and forth for a bit at their tables which were across from one another. Chris finished his lunch and on his way out, thunked the kid on the side of the head with his pencil. Turned out, that kid had a hearing aid. Chris didn't know, the kid had long hair. He got three days of suspension for that. I tried to explain to him that the pencil probably sounded like thunder in the poor kids ear. Of course Chris would pick the kid with the hearing aid to fight with.

I got call after call until he graduated. I sent the principal flowers on the last day of school. We congratulated each other on graduation day. Although the principal called me often, he was always open to my suggestions and we worked together. But, I do not miss that man!

Then there was my daughter. I constantly got calls from the school nurse and had to leave work to pick her up all the time. Mostly accidents in gym (two concussions from volley balls) and cramps from her period. I'm surprised I never got fired.

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Counts with Promacta 6 years 6 days ago #37847

  • Sandi
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Luca:

I don't see a drop from 70's to 52 as a drastic drop. I see it as normal fluctuation and count deviation. Tamar always explains it the best when she says two platelet counts are like two bowls of alphabet soup. A count is a sample, and you won't get the same number twice just like you wouldn't get the same amount of alphabets in two same-sized bowls. There is always margin of error to consider too, such as analyzer calibration, abnormally sized white cells that slide in there, how long the sample sits, etc.

I used to think of my counts in ranges and not really pay close attention to the actual number. If it was in the same range as the last one, I was happy. It went something like this:

0 to 20k - took it more seriously, sometimes treated
20k to 50k - monitored more often
50k to 75k - safe range, didn't worry
75k and up - just fine

I think that was just part of my coping mechanism and it worked for me. I also didn't stress out about counts because I always told myself that my count was exactly the same as the last one until someone told me differently. If I was 30k, then I stayed 30k until the moment I got the new result. There are just as many good surprise results as there are bad ones during treatments, so you never know which way it will go. Platelets live an average of 7 days and they shrink as they get older, so you constantly have new ones coming and old ones dying. That alone can account for two different numbers in a week. We all have lots of platelet microparticles working too. Those little buggers go uncounted but supposedly work well.

I played mind games with myself but it got me by with little stressing over it. Maybe some of these tips can help you guys. If not, then I have no idea what I'm going to do with you!

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Counts with Promacta 6 years 6 days ago #37850

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Luca,

I really hate rollercoasters! The highs, lows, and turns really messes up my state of mind! I sure hope it's not our immune system adapting. I am still counting on Promacta to work for me for a couple of years until something new comes along. It is definitely concerning when you have a drop like that. I went from 63k to 35k to 22k. I really thought I was doing well with Promacta. As of tomorrow, I'm stopping ALL supplements. I had a small nose bleed this morning, but it stopped within 1 minute, gums are looking better (was bleeding some yesterday), petechiae is fading away, bruises are still there...but bruises are take a while for me to completely go away. Just happy I'm not seeing now symptoms.

Hang in there Luca...52k is still a good count...just remind yourself that you're responding to Promacta...so that's a good sign! I was at 52k on 10/3, but it went up to 66k a week later...due to a cold.

My daughter will start counseling later on this week and I'm feeling hopeful that she can get the much needed help. I'm working with the school since she spends so much of her time there. I'm envious that Sandi and you have grown kids. I'm ready for mine to hurry up and finish college...hehe...move out and get jobs...so maybe I can finally get a puppy! We had to give away our Weimaraner since our son is allergic to pet hairs.

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Counts with Promacta 6 years 6 days ago #37851

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Sandi,

You're so funny. I'm sure your kids love you very much and you sound like you're an awesome mom! My husband sometimes travel out of the country and when that happens, my daughter's behavior issues surface up like a cat 5 hurricane. She would wake up in the middle of the night crying because she thinks something bad is going to happen to her dad. I spoke to the counselor today and he told me all the behavior traits that my daughter have is very typical of someone with a high IQ. I will need to learn how to re-channel her energy so that we can make it positive.

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Counts with Promacta 6 years 6 days ago #37852

  • Vdeutsch85
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Everybody please bear with me because this may be a scatter brained post.

Luca,

My counts seem similar to yours. I went from 251 to 51 to 83 all in about five weeks. After talking to people here I'm not too concerned. I will be concerned if I am low and symptomatic. Otherwise I am living my life day to day which I haven't done in a while.

Slammed,

I am going to be very honest with you. I was much like your daughter when I was young. Just constantly anxious depressed and severe OCD. It didn't really effect my academics but drove my parents nuts. Counseling really help calm my irrational thoughts. I wasn't put on meds at the time.

Since I was 15, I was severely depressed. I was in counseling and put on Prozac. Both treatments really helped me. I have been off and on meds and doctors since then.

I had to be taken off lexapro in April and my specialist recommended seeing a psychiatrist. I was hesitant at first but he has really helped me cope with itp and I am on cymbalta. Both therapies seem to help. I'm only seeing him once a month now which is doable in my schedule.he listens to me and tells me how inspiring I am. It sounds cheesy but some days you need to hear it,


As far as teaching, I've never really received any psychological training but do work with students with stress anxiety and depression. The best way I know how to reach them is through my past experiences, I was given all of the "emotional" kids when I taught 2nd grade because I " could relate' so well. Honestly I think the secret is listening to all students and having patients. In a perfect world we would be more educated since our students have these issues in our classroom and we want them to succeed.


As far as your daughter goes, I think it's great that she is going for counseling. It could really help her gain some strategies to help her cope when she is feeling depressed and anxious.if she is anything like me it can't really be explained. It's just part of my wiring. My two unless, grandma and aunt all have anxiety and depression and none of us have had severe traumas in our life.

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Counts with Promacta 6 years 6 days ago #37853

  • Vdeutsch85
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Amber,

I'm sorry I forgot you! Wow your counts are great on Promacta. I hope it continues. You have been through so much!
The following user(s) said Thank You: amberyard

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