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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 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 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 10:15
  • 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 10:27
  • 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 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 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 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 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 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 13:35
  • 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 13:57
  • 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 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 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 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.
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