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25 Jan 2010 18:19
  • alisonp
  • alisonp
Hi Angel85

He will be absolutely devastated if he can't go. He hates the ITP making him different from his friends already - doesn't like to talk about it, or let it make him behave differently. His friends all know about it, but he would prefer that they forgot.

Talked to the local hospital tonight, but they didn't really have any plans other than retesting him Friday to see if it improved. But we have agreed that the doctor will talk to the haematologist at Manchester Childrens Hospital tomorrow to ask his advice, and in the meantime, I have talked to his teacher to see if she can get exact details of the activities that they are going to do and whether he can swop some of the more risky ones for something safer. Hopefully it will work out. His teacher was great about it - said that she wanted him to go, and what can she do to help.

Go and get a blood test - your synptoms sound so like Dougie, especially the petichiae from scratching!

Sorry if I sound like your mum - having started worrying about ITP for my son, I find it difficult to switch off worrying-mum mode!!!! And lots of luck

Ali
25 Jan 2010 17:45
  • tacmom
  • tacmom
I know the nurse already sent the info down to the preauthorization secretary. I don't know how long it will take to hear back from them. I was hoping to take care of this myself to get the ball rolling, but they won't move forward until they hear from the hospital. The nurse said she is aiming for Wednesday or Thursday to do the infusion so I hope it works out.
25 Jan 2010 17:42
  • Angel85
  • Angel85
Awww, sorry to hear they are back down again. I agree, it does feel like your back where you started when they go down. I am getting heaps more petichiae right now especially when i scratch if i have an itchy bite, although i want to remain positive, something tells me my platelets have dropped again.

I hope he does get to go on his camp, it would be something fun for him and might take his mind off the ITP, and i know if i missed out on something cause of my illness, it just made me feel more left out, even if he goes and just takes it really easy and not does too much. I found even if i didn't do anything, just being with my friends helped.
25 Jan 2010 16:51
  • julia
  • julia
:woohoo: Come on there big Steve!!!! Great news! Still a long way to go but im sure he will fight the good fight. We use a very small portion of our brains and even though some of it cant repair itself we can train other parts of our brains. Prayers to Steve & his family for the work still to do but they must have been extatic to walk into that room & see him sitting in the chair. Go gettem Tiger!
Julia
Category: Social Chat
25 Jan 2010 13:57
  • Stangie11
  • Stangie11
Well I am trying to figure out what all these treatments are and how to play the game. I am a very go with the flow girl too. I have always assumed that the doc knows best, but now it seems that we have to pay attention to our own bodies because there is too much going on with these autoimmune disorders and each person responds differently. I appreciate your advice. Currently steroids still keep my count up good, but I am trying to decide if they are worse than Rituxan. I had a splenectomy 8 years ago that sent the ITP into remission until now. So I wondered if Rituxan following a splectomy is safe. The steroids also help a little with the fatigue and the confusion and thinking troubles I have from fatigue. Thank you for your help. Stangie or Angie
Category: Lupus
25 Jan 2010 13:35
  • Stangie11
  • Stangie11
Kim,
You sound like you could write a book about autoimmune diseases and treatments. I got a headache reading through the list of stuff you've tried. Thank you for the input. I currently treat my ITP with steroids and am considering Rituxan. I am confused about how a low dose steroid could be worse than all those toxic choices, but that is what everyone says. I am just beginning to play the game. I have Myasthenia Gravis too, but I feel overwhelmed with other symptoms that go beyond both of my autoimmune disorders and wish that one doctor could tell what was wrong with me. That seems really far-fetched though. I realize how new and complicated all this stuff must be. For now, I thank God everyday that I am here and capable of raising the 3 girls God has given me :)
Category: Lupus
25 Jan 2010 13:09
  • Stangie11
  • Stangie11
Thank you. I am new at this, so I am not even sure what refractory means. Last April I was a 5 and used steroids for till Sept when my count stayed above 100 all by itself. In December it was 20 when I caught it and started on steroids again. It sounds like a game that I am going to have to learn how to play, so I appreciate your help. One doc wants danazol and the other wants Rituxan. So, I am trying to ask as many questions of this group before I decide. I realize that I am blessed to be sitting at my counts compared to some others. I prayed for Timothy all weekend, and for your peace. I thank God that you are one tough cookie. I guess I was worried about the effect that Rituxan would have on my immune system without the spleen, but I feel better after hearing about your mom. What is IVIg?
25 Jan 2010 13:05
  • tigereyes
  • tigereyes
Thats great news that he has woken up. Any news on an address for him?
Category: Social Chat
25 Jan 2010 12:58
  • tigereyes
  • tigereyes
Cindy,
Im so happy for you. Thats a great count. Just keep doing whatever it is that your doing.
25 Jan 2010 12:55
  • Stangie11
  • Stangie11
Do you mind me asking what kinds of treatments you have tried and what the result was? What is your current treatment?
25 Jan 2010 11:21
  • tigereyes
  • tigereyes
I used to do auths for these treatments at my old job. If you call as a patient they will give you a determination in 24-48hrs. where as the dr office it takes a few days. The dr can request that the auth be made stat. And you will get a decision in 24 hrs. As for the IVIG, that is something they can retro to the dos. It wasnt something you could wait on. The key to getting the approval fast is to send all the info needed for the auth, like current platelet counts, failed treatments, even a letter of medical necessity would help. But if you call you get much farther and better help from the insurance company the the dr office alot of time you get an automated system or just a fax # to do the authorization where as the members get a live person. If there are any other questions let me know. Ive been doing authoizations for 5 yrs.
25 Jan 2010 10:27
  • tacmom
  • tacmom
Sandi...thanks! My new insurance is BC/BS, but under a different division called TRS Activecare. I just talked to them on the phone and they said the dr has to fill out a predermination form and fax it and they will need to take time to review it. I have a feeling it won't be done this week. They said it took them two days to approve the IVIG last time and we had it done on the same day that they ordered it so that means it wasn't approved until two days later! We can't really use Nplate as a record of treatment since it was a study drug. So all we have to show for is the IVIG and Prednisone so hopefully they won't deny it. Can I ask how long it took between the time you submitted the request for this treatment until the time you appealed to get this done? I am sure Caitlin will be fine for a few more weeks, but I will just have to really keep a firm eye (and both hands) on her for the time being to keep her feet on the ground.
25 Jan 2010 10:15
  • alisonp
  • alisonp
p.s. Michelle,

The exhausted tiredness was what I noticed about Dougie last week, so maybe a good sign before the physical symptoms set in?

Ali
25 Jan 2010 10:13
  • alisonp
  • alisonp
Hi everyone

Thanks for the posts.

Well it turns out I do have some idea about his count after all - the result was 16.

I am a bit gutted - we seem to be back where we started almost. And it puts him back into the restricted activities area which will upset him too. I am just waiting for the hospital to phone back regarding what to do about his "adventure camp" school trip next week - they said it would be ok to book, so I hope they have some answers at this point in time.

Yours in despair (well a bit anyway)

Ali
25 Jan 2010 10:01
  • dots
  • dots
This is the letter we gave to the head of our son's school when he started kindergarten, as well as all the staff who might be in contact with him. We have adapted it over the last few years, but it has all the information we wanted the school to have, since they didn't know him at all yet. We give them the letter every year, as he no longer gets tested weekly, and his infusions are less frequent. It's about two pages long.

I hope the school's administration is understanding and willing to work with you. The parents here have dealt with every possible situation at school, and are a great resource.

Good luck, and I hope Liam has a great time at school!
____________________________

We would like to give you some information about our son ________’s medical condition, immune thrombocytopenic purpura (ITP), a non-contagious blood disorder in which his platelets are destroyed by his immune system. The low platelet count predisposes him to easy bruising, which may occur after minor trauma or for no apparent reason; petechiae, pinpoint reddish-purple spots that often occur in groups and may look like a rash; and slow to resolve nosebleeds, which, gratefully, are rare. In children, ITP is usually acute and of short duration, but ______ was diagnosed in 2003, and has had it long enough for it to be considered chronic. It’s possible that it will resolve itself, as can happen even after several years. In the meantime, we’re learning to live with it.

Harry is under the regular care of Dr. __________, a hematologist at ________________, where we get his blood checked frequently, sometimes as often as once a week. His check-ups can take all morning, depending on whether the doctor is running late and/or ________ is willing to leave. (Yes, they have a great playroom.) Unfortunately, the doctor is often late for our appointments, since he sees his patients in the hospital before going to the clinic to see his outpatients.

__________ gets infusions of gamma globulin (IVIG) intravenously at the center every six weeks or so, and sometimes more frequently. The infusion procedure lasts all day, and there is no way to shorten the duration of the treatment. The IVIG surrounds his platelets so that they are not destroyed so quickly. In a healthy person, the normal range for the platelet count is 150,000 to 450,000; _______’s count is in the normal range after an infusion, after which it drops over time, sometimes precipitously, until it reaches 25,000 or less, and then he is infused again. Once his platelet level drops below 25,000, there is an extremely slight risk of intracranial hemorrhage (ICH), which is the primary reason we treat him.

This potential for intracranial bleeding is our greatest concern. Although very rare, an ICH can be fatal. If _________ hits his head or his neck, or if he is hit in the abdomen, you must contact us immediately, so we can determine whether he needs acute medical care. We also ask that you contact us if he is lethargic or vomiting, for the same reason. If he has a significant nosebleed, please call if it takes longer than ten minutes to stop, or if you notice any sudden, new, big bruises.

Depending on his platelet count, timing of treatment or ongoing bruising, we may limit or restrict ________’s activities, and we will keep you informed as necessary. There will be days when we won’t want him to participate in gym, and we will need to figure out alternatives ahead of time. As you have seen, _________ is a happy, active child, and we want him to be as active as his classmates. So far it hasn’t been necessary to inform the children in _________’s classes about his ITP, but that may change as they get older and as his friends notice that he misses more school than others in the class. We will make arrangements for someone to come to speak to the class if necessary.

The IVIG has not had any apparent effect on ________’s cognitive development. The treatment is not chemotherapy and there have been no other untoward effects. He has not required transfusions of any kind. He responds well to the treatments and they seem to hold him for about a month and a half at this point, as mentioned above, but the intervals have been as long as thirteen weeks and as short as four. He does not require the administration of any medication at school. We are always on the lookout for any emotional changes based on his frequent medical visits and treatments -- there don’t seem to be any that are significant.

We will keep you updated if there are any changes in _______’s needs. We have not yet determined whether any special accommodations will need to be made for him; if so, we will let you know and discuss with you as soon as possible.

_________’s safety is paramount. We appreciate your working with us to ensure his well-being. We are, of course, available to discuss any of this with you, and to answer any questions you or other staff may have. Please feel free to contact either of us at any time. __________’s doctors’ numbers are below as well for your reference.
25 Jan 2010 09:13
  • gsh
  • gsh
I'm so glad he's woken up. Way to go Steve! Thanks to his family for letting us know how he's doing. Thanks for posting updates, Sandi.
Giselle
Category: Social Chat
25 Jan 2010 07:49
  • xray001
  • xray001
Ali - I hope that Dougie has a good count, but unfortunately, I dread that it will not be.

Isn't that just the thing that really sucks about this -- you can never really know from one day to the next.

Danica was 118 on Friday (which is normal for four days after IVIg), but her white cell count was low, meaning that she has a viral infection. She has been super tired all week, and now I know why.

She went water sliding on the weekend (friend's birthday party) and had fun, but was tired. I am wondering if she will bruise from the sliding. She bruised when she went tobogganing a couple of weeks ago. Nothing serious, but did bruise all the same.

Anxious to hear your results today.

Michelle
25 Jan 2010 06:20
  • alisonp
  • alisonp
Angel85

Thats just exactly like I think with Dougie - for the first 6 months, I knew what symptoms went with what counts, but now I am "not so sure". Its helpful to know that petichiae can show at higher numbers though, because he has only got them before at quite low numbers.

Dougie had a count of 60 a fortnight ago, and I really hope its still somewhere near there. Just got back from a blood test, so we should know this afternoon anyway.

Thanks for the reply

Ali
25 Jan 2010 06:09
  • CindyL
  • CindyL
25 Jan 2010 06:07
  • CindyL
  • CindyL
Tamar, I go to the IV Day Hospital, which is a specialty clinic; there is also a blood lab that is strictly for regular blood tests.

I started going on Sundays because I don't like to drive in the winter and Steven doesn't work Sunday's, so he drives me.
25 Jan 2010 04:04
  • Angel85
  • Angel85
Hi Jenny,

Sorry you have had to find this forum, but it is a great resource for ITP and has wonderful helpful members. I am also from Australia, I live in Newcastle in NSW and I am 24 and have been dealing with low platelets all my life, so i can understand what Liam would be going through and that at his age he wouldn't be able to understand much of what his happening to him.

I am currently on prednisone at the moment and i hate it too, so i feel sorry for him having to have that at such a young age. I wouldn't let him stay on it for a long period of time, I had it for quite a long time when i was younger and i hated what it did to me and my mum also hated to see what it was doing to me too.

It is scary thinking about what could happen, but platelets at 20 and over, you can function normally and do most every day activities, so try not to worry too much and just let him enjoy being at school with the other kids and i'm sure his teachers will watch over him as well if you explain to them what he has. I have to admit even now at my age, my mother still worries about me when my platelets are really low and always says before i leave be careful, i think it is just a mother's job to worry about her kids.

I feel dissapointed every time my counts come back low, it feels like you have to start all over again.
25 Jan 2010 03:39
  • Angel85
  • Angel85
I used to think so, but now i'm not so sure. My last platelet count was 76 last week and i have about 4 or 5 bruises on my legs and heaps of petichiae, more then what i had when they were at say 20, unless they have suddenly gone down, which i am hoping not cause i am still on 40mg of pred a day. I had another count done today, so i'll guess i will know in a day or two if they have gone up or down again.
25 Jan 2010 03:32
  • Angel85
  • Angel85
Thats Great Cindy, hopefully they stay around the same level, i'm still having weekly counts at the moment
25 Jan 2010 01:14
  • liam12
  • liam12
hi , my name is Jenny,my son Liam is 4 and a half,he has had itp for at least 10 months ,Liam gets purplish circles under his eyes and gets quite pale and tired along with a couple of extra bruising for good measure! his doctor says these symptoms are not typical of itp but every time he gets like this and even if his bruising has not gotten worst yet i am normally spot on that his levels have gone down. Jenny
25 Jan 2010 01:01
  • liam12
  • liam12
hi,my mane is Jenny,my son Liam is 4 years old and was diagnosed with itp in April last year
his platelet levels were 7 .He has had all the other tests to rule out any other nasties,in the last 10 months he has had steroids ,wich are fine if you dont take into account the side effects or that the last time he was on them for one week his levels only went up to 40. Without the steroids his levels are consistently at around 20-25 give or take.Liam is due to start school this weekand i am more worried than ever about wether he will be ok,mid you he can hold his own as he has 2 older btothers.Liam is beig seen//treated at The Royal Childrens Hospital in Melbourne,Australia,his heamatologist reasures us he will be fine,I am absolutely petrified as i wont be with him to constantly remind him to slow down,stop climbing etc.. We have tried naturapaths and other herbs ,all to no avail.For some unknown reason i expected his levels to go up just before he started school,and when they didnt the dissapointment was nearly as bad as hearing it for the first time.Its been great to let off some steam and emotion.Thankyou,it would be great to hear from anyone,Jenny
24 Jan 2010 20:08
  • tofer
  • tofer
Steve will be again in my prayers tonight & everyday. Until he can respond and tell us he's praying for us. <giggle>
Hang in there Steve.
Category: Social Chat
24 Jan 2010 18:45
  • Sandi
  • Sandi
Pauline:

It all depends on the insurance company and the type of policy you have. I had Health Assurance and was denied...they wouldn't change their minds. Then I got switched to BC/BS and they denied at first, but approved after appeal.

I would think that you could appeal and win based on the fact that Caitlin has gone through most treatments with little result.
24 Jan 2010 18:26
  • snowgoose
  • snowgoose
That is the first step in the battle won! Thank you God for answered prayers. Praying that you will continue making steps towards a full recovery Steve.

Love and prayers to you and your family

Vanessa :)

Thank you so much for passing on this good news Sandi.
Category: Social Chat
24 Jan 2010 16:56
  • alisonp
  • alisonp
Hi Pauline

Your posts about insurance make me feel grateful for the NHS - thank you!

Having said that , there are also a lot of drugs that we would find it difficult to get on the NHS, either because they haven't been approved by NICE (national drugs approval body) or because the local health authority hasn't got sufficient funds. So for example, my dad has a form of bone marrow cancer called myeloma. He gets treatment with a new and very expensive drug that seems to work really effectively for him, but a friend of his who lives about 100 miles away from him can't get that drug because his local health authority won't pay for it! So this is probably just as much of a lottery in the UK.

Hope it isn't too difficult for you to get Caitlin's treatment approved anyway and that she has some improvement from it.

Ali
24 Jan 2010 16:41
  • alisonp
  • alisonp
I am not sure that there will be a good answer to this, but I've decided to ask the question anyway.

Dougie has just got out of the shower. He has loads of petichiae on his legs and feet, and fewer over the rest of his body. He only used to get petichiae and bruising at counts under 10 or so, but then in October, he started getting bleeding under his skin (like a graze without the broken skin) from scratching or knocking himself at relatively high counts (20 to 30). I've just looked at his legs now, and although he hasn't got any of the raised bruises, a lot of his legs just look dirty. I thought he was still covered in mud from football and I unsuccessfully sent him back into the shower to try again with the soap, lol! But when I look closely, it is like bruising, but a long way under his skin.

I am losing confidence in my ability to work out what his count is, and therefore to decide what he should or shouldn't be doing at any point in time. This is becoming particularly difficult because his count has been all over the place in the past couple of months (between 33 and 123, but possibly lower at the moment). Today, for example, we let him play footie for his team today. Lots of hard tackles, although we've banned him from heading the ball ever since he got ITP. Now I am wondering whether we should have not let him do so because the consultant said he should'nt be playing competitively with a count under 30 - in my defence I didn't think it was anywhere near that bad until I saw him fresh from the shower!

So what I want to know is

a) whether ITP symptoms are consistent over time with your kids or do they change from month to month, and

b) if their symptoms are not consistent, how on earth do you decide what activities should be restricted or not at any point in time.

He is going for a blood test tomorrow anyway. I don't work Mondays so if he needs to go, I always try to arrange it then. But if his count continues to yo-yo like it has done recently, I need a better way of reading the symptoms because this continual testing just makes me paranoid!

Thanks for reading this stupidly long post,

Ali
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