Need help dealing with ITP

My name is Jeff and I am looking for help for my son Zachary 17 that was diagnosed with ITP on December 21,2009, he was treated with a winro and reacted pretty bad to it complaining of a back problem a couple of days following. His platets at the time were 1. we have spent an entire year dealing with not only ITP but what was eventually properly diagnosed as a herniated disc. On November 15th 2010 my son was given an IVIG and a 5 day dose of Prednisone to amp his platelets prior to a discectomy scheduled for the 22 of November 2010. He went into surgery with a platelet count of 220 and of course we were finally released from the hospital on the evening of Thanksgiving after recieving an additional IVIG because his Platelets plummated and we have been running highs and lows ever sice the surgery. Two weeks ago my son was diagnosed as chronic with a platelet count of 1 and the doctors put him on 6-MP 80 Mg of Prednisone and Amaicar putting His pill intake to 50.5 per day. Thursday the 5th of January his platelets were at 43 and on saturday he experienced a four hour nose bleed becoming sick on Sunday (so he says) and feeling like he is going to passout. Today he was in for early labs and is now staying home from school from fear of what the day may bring and not wanting to be with his classmates in case his nose starts bleeding again. Within the last hour of writing this my son texted me to apologize for putting me through this (Tore my Hart out) and informed me that his nose is now beginning to bleed again. My fear is I am beginnning to see signs of depression, every time we think we have this under control we are taking steps backward. Prior to the diagnoses my son was active in Basketball, Football and Track as a year round athlete, I really need to find a support group for him as he no longer wants to do anything because of what he is dealing with. Can anyone help? We are located in Minnesota.

just sent you a note, Jeff. Should be in your email.

Jeff, I'm in the Twin Cities and my hematologist is at MN Hematology and Oncology in Minneapolis - my doctor is Tom Flynn. Are you seeing a doctor who is familiar with ITP?

There are many treatments available for you to try. We can talk about them here, nobody is selling anything - lots of links and discussions of your medical options from Rituxan to nPlate to watch and wait. There is so much free information for you here. Please read and feel comfortable in this community. There is even a forum for teens for your son - although at his age he might prefer the adult forums.

Erica

Thanks Erica

Zack is currently seeing doctors at Childrens in Minneapolis, we finally got his platelet count today after his labs this morning, they were 18. is it common to be bouncing around with these numbers? last Thursday they called to say they were 43 up from 1 the previous Thursday, we had the nose bleed saturday to find they are 18 today and now we are unsure what side of the rollercoaster we are on. Are we going up or are we going down? Erica, is there somewhere I can point him to talk to some others that may be in the same situation of his age group?

Hi Jeff,

I'm in the Twin Cities, too. Are you going to Fairview Children's on the U campus? If so, maybe you're seeing a doctor from the Masonic Cancer clinic. That's where I have gone for 10 years.

I am not sure I can PM you until you have more posts, but I'll give it a try.

Tamar

We are at Childrens Hematology on Chicago Ave. It's where we were sent because Zack was 16 at the 1st diagnoses, they are great over there and Zack is comfortable with them.

Jeff - oddly, the Teen Section here is pretty quiet which is a shame. I'm sure it would benefit your son if there were more interaction.

Tapering from Prednisone can cause depression...search 'steroid induced depression' and you'll find a lot of information. It happened to me. He needs to be reminded that a lot of what he is feeling is caused by the drug. Between that and the diagnosis, I'm sure his world has been flipped upsidedown. There is a lot of hope that this is acute and will go away at some point. If not, please reassure him that people can and do live normal lives with ITP. Things will get better. It can take time.

Yes, platelet fluctuations are very normal with ITP. It's part of the roller coaster.

We have a few active folks in the adult forums who are in their late teens and early twenties.

Also there are a lot of parents of teens posting in the parents discussion forums.

I've seen a lot of the parents posting about bouncing counts.
Erica

Sorry to hear all the crap your son is going through!!! I went through two depression phases after ITP diagnosis. If you see or feel depression is progressing in your son, get it checked out!!! DO NOT let it go untreated!!! Platelets carry Serotonin, which is a mood regulator in our bodies. Depression is not good for the body in general, especially those with ITP. I maybe 20+ years older than your son, but I would be glad to talk to him or you about depression or ITP. I also live in MN. A few hrs E of the Cities on I-94.
I sent you an e-mail.

Thanks Sandi

I will be talking to his doctor today and will make sure I mention it to her as well as look at the web site you mentioned. Upon getting home from work last night I picked up Zack and went to Wallgreens to purchased a Medical alert bracelet as a precautionary measure should something happen and I'm not around.

Dean, sandi and erica

Thanks for your replies, I have been gently pushing Zacahary to this web site, my wife Betty actually posted something today as well. She apperently was unaware that I had already signed us up. I have a question about the depression. The last time I talked to Hematology at childrens I mentioned that I would like to see Zack connecting to somebody he could talk to that could relate to what he is going through. I recieved a call today from a doctor concerning his mental health that would like me to bring him in for a meeting and throughout the conversation she mentioned that maybe Zack could get a prescription for some meds to help with his depression, Can any of you talk to me about adding more meds to this. Currently Zack is taking 40 AMACAR per day, 6 Prednisone per day, 2.5 6-MP per day and having to eat Rolaids so his stomach does not get upset. Should I now allow them to give him more medicine? Can you help with this, it frustrates me that the conversation turned to more meds instead of trying to talk about what he is going through.

Thanks
Jeff

I know it must be hard emotionally on a 17 yr old to have nose bleeds, back surgery. The worst thing for that age is to feel different, excluded and like an outsider. My son is 19 and his last year of high school when he was 17 was very tough emotionally, and he wasn't dealing with any health issues! He felt better after graduating.

Common sense tells me that your son needs support, maybe some kind of diversion and not more drugs. Just my opinion as a parent. Anti-depressants can have their own burden of side effects, and can even make depression worse, so it would be a risk.

Another suggestion might be finding a therapist/counselor/trainer, someone to give support and encouragement, before prescribing drugs.

Also might think if there is anything your son is interested in that is not sports? Something creative like making videos, art, music, etc? Something he could get excited about and would validate him, make him feel that his life is moving forward and that he is part of the group. Just some thoughts- take care and good luck!

Hi Jeff,
Sorry your son is feeling so bad, 17 year old boys are pretty deep thinkers they tend not to talk to much about how they are feeling and I am guessing by the meds he is taking he probably feels pretty awful.
My experience (and this is just me) with prednisone was similar and I think if I had been better prepared for taking pred from my doctor I probably could of coped better. I was sent home from hospital on 75mg of pred and told just watch what you eat you are probably going to put on weight, well after one month of 75mg the weight was the least of my problems. I thought I was loosing my mind, I couldn't think, I cried all the time, I couldn't make a rational decision about anything and all this time I really thought that it was the ITP that was making me feel this way because the doctor only told me about the increased appetite not the other side effects. I was very depressed and at times thought if this is what life is going to be like I don't know that I want this life. I eventually found this site and read through all the post's about prednisone and found out this was why I was feeling the way I was.
Is your son getting much sleep? I found this added to the problem, I was only getting about three hours sleep a night (another side effect) I did take sleeping tablets and that stretched it out to about five hours.
Anyway what I am trying to say is I hope your son understands that maybe it is the meds that are making him feel so bad and not the ITP, his life will go back to a normal life and there is light at the end of the tunnel and maybe he just needs help to see the end.
I know meds effect everyone different but I think that instead of adding more drugs I would look at if the meds he is taking are the cause, maybe there is some other treatment option that would help his ITP.
I do hope you find an answer to this, I do feel for him, sometimes your mind can take you to some pretty dark places.

I too would look at the drugs he's on. 6MP is not a usual drug for adults although I've heard of a few children taking it over on the parents' board. How long is he going to stay on these drugs? Is it really necessary to be on both drugs at the same time? If you haven't asked the doctor these questions I would. You need to know what the plan is and if they haven't got one then they need to think of one. What I found really helped was when I had some say in the treatment choices and the doctor asked me what I wanted to try next. If your son could have some control himself he may feel better.

Ann

Thanks for responding. Zack has been on 6-MP for about 3 weeks now and the Prednisone for that many more, when they started him on the 6-MP his platelets were 1k, they increased teh Prednisone to 80MG per day because of the low platelets and introduced the Amacar because of the same. by Thursday he went to 43k, they then reduced the Prednisone to 60MG per day and we experiensed a 4 hour nose bleed on Saturday and sick feeling/ recovery on Sunday to then find out he was 18k on Monday. Unfortunately he stayed home from school from fear of bleeding again and the fact that his nose was shreaded from the clamp we put on his ( I got some of those white plastic clamps while at the emergency room last time we had to have that visit, I told the doctor that since I would paying for the visit the one he was using was coming home with me and nurse in the room left and came back with some additional ones, I get so frustrated trying to assist him in getting his nose to stop bleeding, it starts with one side and by the time we get that to stop the other side starts). We are scheduled to visit the Hematologist next Tuesday so if anyone has any questions that I should be asking I would greatly appreciate the input.

Thank you all for your help
Jeff

Jeff:

My Predisone depression was awful. I'd never had depression before that and haven't had it since. I did need medical intervention; I wasn't able to get past it. A big part of my problem was that I was trying to juggle a very hectic life - full time stressful job and three kids, and I just felt like I couldn't manage it all successfully. I finally broke down one day and didn't stop crying for 3 days. That isn't me. Anyway, I started taking an antidepressant and was much better in a few days. I do not believe a therapist would have helped that situation since it was steroid induced and I needed help NOW.

I'm not suggesting you do this. Antidepressants in teens can be dangerous depending on which one is prescribed. There is a rise in the risk of suicide in teenagers on antidepressants. There wouldn't be any harm in adding another pill because of the meds he's already on, but antidepressants can be heavy duty. That decision must be made carefully based on the seriousness of the depression.

It would be great if he would come here and talk. Everyone here has been through it and he would be reassured in so many ways. It might help.

Is he going to college? I'm asking because the PDSA offers a $1,000 Scholarship to teens with platelet disorders. It's actually coming up soon (due in March), and in order to enter, the student needs to write an essay. If he participated in that, maybe it would also help him to put his thoughts on paper. I really wish I had saved the ones from last year so he could read them. So many of them had such positive messages about how a person took the diagnosis and turned it into a good, life changing experience. Attitude is everything and once the diagnosis settles in and a person regroups, they can really take something seemingly awful and turn it into something from which they learned a lot.

Jeff, a few hints about nosebleeds-- To help prevent nosebleeds, keep nose moist--which is harder in winter when air is dry and houses (esp. in Minnesota, I would guess) are heated. I use a simple saline spray several times a day. I sometimes use a steam inhaler too. Your medical folks have probably told your son how to react when he does get a nosebleed--to sit up straight, chin down (not head back), pinching both sides of nostrils gently. Try to resist peeking too often to see if the bleed has stopped.

My last nosebleed (which occurred at 33K! surprising!) I couldn't stop with the usual pressure, however, and the ER doc had to pack my nose with what looked like a very long tampon soaked in coagulant, I think. I haven't heard of the clamps you mentioned. The packing was probably as uncomfortable as the clamps, but it didn't shred my nose.

I was put on 40mg of Celexa for my depression. Once I showed signs of improvement dose was cut to 20mg. Dr. said this is one of the milder depression meds.
Like milly, I was not getting enough sleep and tried several sleep aids with not much luck. Prednisone was stopped several years ago as it did not sustain counts. I am sure Prednisone added to the lack of sleep. I lost interest in everything. Cried for no reason and just felt plain worthless!! I was 36 yrs old (for crying out loud) grow up and get over it I thought. I could'nt do it on my own. I seen a Mental Health Dr. once. Verbally talking about it did not help. My family practice Dr. prescribed a medication that brought me back!!! I think back and never want to experience that again!!! Look for signs of disconnection from things he likes to do, behavior changes, sadness, crying, appitite, things out of the ordinary. I had a hard time admitting I was depressed and that I needed help. I hate relying on a medication to feel better. I definatly did not like having to take a Chemo drug for ITP twice!!! Alot of health conditions do not go away on their own, medication is needed to treat the problem. We either suffer from the Health condition which if untreated may be life threatning or treat with medication which may or may not have side affects. We all react differently. It is a gamble either way. I see people that have a ziplock bag full of medications. One is used to counteract another which is used to counteract another and another...... Personally, if he is suffering from mild depression I would rather see your son be treated now with a mild SSRI vs a stronger one if the depression gets worse. I feel there is a greater risk of deeper depression/side affects with the stronger SSRI medications. Go to the Mayo Clinic site and type in SSRI's. It will give you some good info. As Sandi mentioned, your son will settle into this and deal with it just fine. It is a life changing experience. He will get through it!! He is not alone!!!!!! As I mentioned, I would be willing to talk either in e-mail or phone. I know it is a very difficult thing to talk about.

I am new here and just wanted to let you know...this site has helped me greatly. I am glad you and your wife has found us. I agree with the above advice, think it would be great if your son could come join us. I'm sure it will help him adjust to ITP and what a great support group of friends we have here.

Okay so here is the update

I am going to start by thanking all of you, I have only been on here less then a week and am really inpressed and thankful that you have all been so responsive and kind so Thank You! Very much!

I think it is time to sit Zachary down and get him on this site, I am going to have him read the subjects his mother (Betty)and i have written and the responses you all have posted so he can see what a helpful site this is. I would like to invite all of you to give Zachary the mild push he needs by responding to this on his behalf so he can see that this community is here for him.

By the way his platelet were at 21k yesterday up from 18k on Monday. I talked to Hematology about the concerns that you posted this morning and am currently waiting to hear back from his doctor.

If you respond to this do me a favor and write it to Zachary inviting him to become a part of the group.

Thank You
Jeff

Zachary I am so glad to hear you will be joining us. You will find lots of helpful information on this site and you will meet lots of friends. Do lots of reading and posting and always know you can ask questions and someone will be there with advice. Everyone is very supportive. Welcome my new friend!

Hey Zachary,
Just wanted to say a big welcome and although we are sorry that you have to be here we are here to help you.
We probably have a good understanding of what you are going through at the moment and we may be able to give you a few hints and tips on how to deal with it.
Life probably feels pretty down at the moment. When you first get ITP your life just feels so different, all those Drs and pills, every time you turn around it seems like someone is poking you with a needle.

Zachary all this does get better and the doctors visits and meds will get less and less. Prednisone just can make you feel miserable believe me I know, I cried all the time and I could not even give a reason, it wasn't that anything was worrying me the prednisone was just making me feel so awful but you will get off it and you life will be all good again.
Zachary if you have a read through all the posts on here you will see at one time or other most of us have had a bit of a rant about all this ITP stuff and there is always someone that will help you through it, so welcome Zachary, come join us.

Hi Zachary!
Welcome. You will find this site a place where people really, really understand what you're going through. People from all walks of life and experiences find friends, comfort and strength here. The folks here got me through an oh-so-hard time last year. I don't know what I would've done without them. So, welcome.

Hello Zachary! I just wanted you to know that we have all been through the same things and can totally relate. It does get easier.

Please feel free to ask any questions that you might have!

Welcome Zach!!! You are not alone in this battle. We have all been in your shoes!!! This is a "rollercoaster" ride. Try not to worry, it will be OK!!! This is a great group of people that know what you are going through!! Please join us!!!

Hi Zachary,
Sounds like you have great folks (Jeff & Betty) & now you have an extended 'family' to support you! Hang in there.
By the way - when I had a major nose bleed last year it was hard to tell where it was coming from. When my nose was packed one side it would bleed from the other. Eventually when I saw an ear/nose/throat specialist to check it out he told me 'you only bleed from one side i.e. one blood vessel has burst. When it is blocked the blood travels down the other side, causing the confusion.' He cauterized the vessel successfully.
Thinking of you from Down Under
mj

Hi Jeff,

Sorry to hear that. Hopefully Zachary gets well soon!
Have Zachary try a form of natural treatment like macrobiotics/alkaline diet and energy healing? Please do consider because it really works for me, it might work for your son too.

Hi Zachary!
I know this is hard for you, but you will get through it and it will get better as time goes on. You have such wonderful supportive parents! You are very lucky for this. Please come join the site as we are all here to help you. We know what you are going through as most of us have gone through it, too; or, we have children that have gone through these ITP problems.
Welcome!