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cesar

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14 years 9 months ago #444 by camacho19
cesar was created by camacho19
my son was diagnosed a little over a year ago. since this past september his platelets have been so low that they have not gone above 27,ooo. he went today to a new specialist ad they were below 10,000 again. now they are talking about IVIG to see how he reacts to it. so far he has no treatments at all, but he is in pre-k and has horrible bruises all over him although we have told his teachers and the director he cant be rough, last week he had a black eye. He also has a cyst behind his ear that has to be removed so i am thinking about oking the treatment to see if it works for him and to get rid of the cyst at the same time. if anyone out there has any advice or experience with this i would love some. i need something to calm my anxiety. i cant go anywhere with him in the car without thinking if something horrible happenes he might not make it.

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14 years 9 months ago #454 by juliannesmom
Replied by juliannesmom on topic Re:cesar
If he takes IVIG, make sure he is well-hydrated before, during, and after, and that he is medicated with tylenol and benadryl, before, during, and after. After, for my kid, means a day or two. We didn't know this the first time, and she had a horrible headache so bad she had to return to the hospital to rule out a head bleed. She was pretreated, but the tylenol and benadryl weren't kept up round the clock. Once we knew this trick, her side effects were minimal to nonexistent in the later treatments. I'm sending you prayer and good thoughts, because I recall all too well the anxiety you feel. I know the feeling about the car rides. I called my kid "the egg," during that time, because I feared she would crack if someone hit the brake too hard or she had a spill. I made unnecessary solo trips to the grocery store to have some time alone to cry in the car, since I couldn't cry in front of her and my family and friends didn't really understand. This can get better. My kid's counts now stay at or near normal, but it took well over a year to get there, and they still dip a bit when she has a virus. All treatments have side effects and risks, which must be weighed against the risk of injury and low counts. If he needs a cyst removed, teeth pulled, etc., treatment is good. IVIG works for my kid, and I'm glad there is a "rescue treatment" available to her. It has a risk, however, and we reserve it for "rescues." On the other hand, while steroids make one feel bad, they don't have the side effects of IVIG, nor the risk. Has there been any discussion of trying a brief course of steroids, with a taper off of them, of course, to boost his count enough to deal with the cyst?
Norma

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 9 months ago #465 by Angel85
Replied by Angel85 on topic Re:cesar
I haven't really had IVIG, but i am on prednisone now and unless it is a low dose for a very short time, i would highy advise against prednisone. I hate it with a passion, the side effects are not worth the results, my platlets go up high initially when i start it, but once my body has gotten used to it, they go down and sit at around 26-30.

It does get stressfull worrrying about all the things that can go wrong, but if you do that, you will wrap him in cotton wool and not be able to enjoy seeing him have some fun and if your stressed, your child will pick up on that as well. I know it's easier said then done, but just try to relax and not worry about the things you have no control over.

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14 years 9 months ago #518 by juliannesmom
Replied by juliannesmom on topic Re:cesar
While no one wants long-term steroids, for a brief treatment to boost counts for a procedure, steroids are safer, less expensive, less invasive, and less risky, and they do the trick to get most patients enough platelets to have a surgical procedure like cyst removal. Ten days of prednisone allowed my kid to have several stubborn baby teeth pulled for braces. For my kid, IVIG requires a hospital admission and costs about $20,000 before the insurance payment and insurance-related reductions. My part of that is still hefty. For all patients, it at least requires several hours in an outpatient hospital or clinic setting. It involves an IV, with at least some risk of IV problems like infection and puncture issues. IVIG is quite temporary also, lasting only days to a few weeks for most, and its side effects can be excruciating. It is sometimes in short supply due to its military uses. Also, while much care is taken to make it as safe as possible, IVIG is a pooled donor plasma product, with at least some risk of transmitting pathogens. The process has improved a lot, but there were some cases years ago of IVIG-transmitted hepatitis C. I'm glad it works for my kid, but, for her sake, I want it used sparingly.
Norma

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14 years 8 months ago #1001 by jpoisson13
Replied by jpoisson13 on topic Re: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

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