what do I do?

My 5 year old son has had ITP for about a year and a half. We have been very fortunate thus far. His counts have responded well to IVIg treatments. The treatments can normally get his counts into the 200's. He will sit in that chair and have his iv put inane tolerates the treatment better than any adult. I thank God daily for the amazingly strong son he has blessed us with, but he is beginning to change. This change has me terrified!
Over the past 2 or 3 weeks he has been a wreck. At least twice a day he gets very anxious and upset, thinking there are wired things happening to his body. He keeps telling me things like there is a bug in his ear, mouth, throat, etc. There is never anything there...I check. He gets so wound up over these things and scares himself half to death. I don't know how to convince him that he is fine.
He has also recently told me that he wants to die and go to Heaven "cause in Heaven he would have normal blood and he wouldn't feel bad anymore". It breaks my heart to know he feels this way! Does anyone else's children go through anything like This and if so, is there any advice you could give me?!

Sounds like he might be starting to have a reaction to the IVIG and certain membranes are reacting and itching.

What happens if you don't treat your son? Does he have uncontrollable bleeding. I ask because many doctors ignore the count and treat symptoms instead and if there's no bleeding or just the odd nosebleed they don't treat children at all.

Maybe a second opinion is in order.

Ahh...poor little guy! These are not symptoms caused by ITP. It sure does sound like some possible reaction to the IVIG, or very possibly, one of the pre-treatments that he's likely being given through the IV, such as Benadryl or Tylenol. I would find out exactly what he's being given and then look up the side effects of each. All drugs have side effects, that is a given. Not every person will have every side effect, of course, but your son might be one of the one's who has this kind of mental reaction.

Do you know if they are giving him Tylenol 3? Feeling like there are bugs crawling on the body is a common symptom of cocaine addicts, so could possibly be a symptom from a codeine-containing medicine, which Tylenol 3 is one (That's why it's prescription only). It may be that he is actually being drugged out of his little mind, and that's why he sits so quietly. There are also some people that are known as ultra-rapid metabolizers, due to a specific gene. They convert codeine into morphine more rapidly and completely than other people. , and so can have more intense or serious side effects than others. And, since we know that Acetaminophen (aka Tylenol), is the LEADING cause of acute liver failure today, I would seriously take a look at this for your little boy; the effects can be cumulative.

And, though they probably haven't told you this (I know they didn't tell me, and my daughter had probably 24 or 25 IVIGs), IVIG is not expected to, nor intended to put him in remission. They know that it will be a way to bring the platelets up quickly, but only temporarily. That's why it's often the go-to treatment for those needing surgery, when they need the count to be higher. The time before counts crash again is variable. For my daughter, the IVIG would bring her counts up only very slightly (btw 10-42) after 2 days. But, they would always fall back to 3-10k by the next week. My daughter had horrible, horrible reactions to the IVIG, and if I'd have been better informed, today, I would never put her through that again.

Like Ann, I would suggest reading more on this site, and exploring the possibility of "watch and wait", or some of the natural treatments. Many children on this board do just that, and while their counts may remain low, at least they needn't endure the awful side effects of the drugs. Btw, my daughter nearly died from two anaphylactic shock reactions--one from Winho, the other from IVIG. And, while they nearly killed her, they did zero for her count.
Instead, she was eventually healed using homeopathic medicine. After 2 small doses, her count went from 11k to 411k in just a few days. There are a few different homeopathic remedies that have this feeling of bugs crawling on them as a symptom. I have used these a few times to help cocaine addicts withdraw more easily, especially when they're having that symptom.

Best wishes,
April

Thanks for the input yall. It has been 2 months since he had an IVIg treatment. Would he still have those side effects this far out? It isn't just the itchy feeling he gets, he is becoming a hypochondriac. He always thinks something is wrong with him and who am I to judge? I don't feel what he feels. He says he feels "fuzzy" alot. The first time he felt this, he had just had a pretty bad nosebleed at PE. The nurse called me to come get him because he was scared to death.
I am aware that the IVIg is not a cure for ITP. We, along with his Dr, have decided to continue the IVIg treatments until the summer. At that point we are going to try Rituximab. I don't want to do the Rituximab now because he would have to be out of school 5 days in a many weeks. His Dr. is so far away from us that going is an all day thing. There are no pediatric hematologists in the area we live in. His is the closest and they are almost 100 miles away.
I trust his Dr and he is very comfortable with the environment, nurses, staff, etc. I have thought about getting a second opinion but have nowhere to go. His insurance won't cover anything outside of our state.
I am wondering if these "feelings" he gets are purely psychological and are caused by all the trauma he has endured in the past year and a half. I want to take him to see a therapist but I am second guessing myself. I don't want him to be on any more meds than he already is.
April, if you don't mind my asking, what worked for your child?

I was thinking it could be psychological but held off saying anything. It wouldn't hurt for him to see a therapist.

You might want to look into the lower dose, less infusion research for Rituxan. Sometimes two treatments are all that is needed and he wouldn't have to miss as much school. If he does get a remission from Rituxan, he'd miss less school in the long run.

Sandi, I am going to speak to his doctors this week and get their take on these issues. As for the treatments I will mention it to his hematologist when I speak to her this week. Thank you so much for your input!

Just because he sees a therapist doesn't mean that he has to go on more meds. Therapist don't prescribe Psychiatrist do, so though a therapist can recommend he see a psychiatrist just seeing a therapist may help him greatly, especially being able to express his feelings about all the yucky stuff that has happened.

Thank you. I think it might help as well.

I agree with having his Mental Health checked out. He has been through alot at his young age. The medications/ITP is alot for his developing body to deal with.

My Daughter is the same age and has had ITP for 1.5 years. The treatments play a toll on them and combined with TV and other creative things they see, I think it common for them to worry. My daughter is always worried about treatment and how she is going to feel. SHe works her self up. Talk with your doctor to see if you can take a break or find something else for the time being to give him a break from it. We did the trial study of Promacta because the "pokes" started to wear on her. I also got comfortable with low numbers and would only treat if we had to or had an event where I felt better with high numbers. Hang in there, It is heart breaking to watch your child go through this, I know.

After eight and a half years of ITP, my almost-11 year old is an anxious little person. We've only ever treated him with IVIG, and haven't even done that in over two years. It gave him terrible headaches two days later, and he's become needle-phobic. His anxiety presents itself in a variety of different situations, and I'm convinced it has everything to do with having a chronic illness for such a long time. He talks about his ITP a little now, and asks lots of questions about it.

I think ITP kids have a lot of very real fears, especially if they've experienced big bleeds (my son has had two very significant nosebleeds, one four and one five hours, each requiring hospitalization and iron supplementation for three months afterward). My son is afraid of needles, of needing to go to the hospital, and -- without saying so -- bleeding to death.

His therapist has been helpful, but time will be more helpful. We had him evaluated by a psychiatrist for anti-anxiety meds, but SSRIs are contraindicated because they cause a lowered platelet count. How's that for irony? April was very helpful in making suggestions regarding homeopathy, and I'm now looking for one whose hours jibe better with ours. (Thanks again, April!)

I would get him to a therapist, and see if that helps. Progress is slow, but it's progress. It's a long road, and I wish you luck. It's so hard.

In a Harvard study it was found that 22% of childern and adolescents who have been prescribed any one of the SSRI antidepressents suffered drug-induced psychiatric adverse affects within 3 months. 74% of childern/adolescents experienced (suffered) an adverse event to an SSRI over the course of their treatment. The SSRI's prescribed were, Prozac, Paxil, Zoloft, Luvox and Celexa. After the drugs were withdrawn and the childern were re-exposed to an SSRI, 44% suffered another Psychiatric adverse effect. Antidepressent drugs are not the solution for troubled childern. Documented evidence consistently shows that the drugs are causing childern mental distress that can only aggravate their problems. The most frequent adverse effects are sleep disturbance and agitation. The combination is a prescription for violent outbursts, such as, self injury, suicide attempts and/or violent outbursts twords others. Medical authorities in Great Britan have banned the use of SSRI's in childern under the age of 18. I have had to deal with some of these adverse effects in childern. It is not fun. The violence that some display is scary!!
I have been on Celexa for several years. It really helped with my depression but I wonder the long term affects. I weened myself off it once but had to go back on it again. Mental Health issues really seem to be increasing. What are we doing to ourselves??

I agree...it is hard for our kids to deal with these. My daughter is 13 and seems to have the tendency to blow her symptoms out of proportion. She's gotten better about this now, but she would text me and tell me things and I thought she was in an emergency situation, but then I'd get to her and she'd be fine. Like when she is sick, she will tell me she can't stop throwing up or her fever is 105 and I find out she's really only thrown up a little bit and her fever is about 102. Used to freak me out and I got mad at her. She would say it got better before I got to her. We've had several ER visits, but thankfully, they all ended up being warranted but none were bad enough to keep her overnight. Then there are other times, where she minimizes things so she can do what she wants without restrictions. (She did a competition with a broken wrist that she had fractured 3 weeks earlier but kept telling me everything was fine. The minute she finished, she told me to take her to the doctor for an xray and it was broken.) My daughter did this for about two years and has been fine for the last two. I really think she was worried constantly about her ITP and did not want to say it outright so she made up other symptoms so she could get checked out by a doctor. I hope your hematologist is able to give you some suggestions! Maybe some relaxation techniques rather than meds. Good luck!

I just want to say a big THANK YOU for all your comments and suggestions. I am still worried about my little man but I feel a little better about what's going on with him. I have made an appointment with a therapist for myself to see ifI can figure out how to help him without him having to see yet another Dr.

Good Luck.

That was a good idea! Maybe you can both go at the same time after a few weeks and have a few family sessions. Then your son might think it's not just him that sees the 'doctor'.

I interviewed ten different therapists before I found one who I thought would work. For my kid, it needed to be a young man who would get on the floor and play. Many therapists who've been doing it for a while don't want to get on the floor anymore. We described the therapist to my then-7 year old that he was someone who could help him feel happier, which seemed to make the idea a lot more interesting to him. They did play therapy only for years. It wasn't until recently that my son has started talking to him about anything real. Legos, battles between good and evil, kids with diseases, lots of blood -- all these things came up during play. It's been very helpful. And I don't know what I'd do without mine.

You found a very good therapist!

Two of them! Unfortunately, therapy can take a long time to be effective, and even a good therapist can't fix all the things that need to be fixed. The client needs to be open. That's the hardest part for my kid: even though he knows he needs to be there, he can be very resistant to doing what he needs to do to help himself feel better outside the therapist's office.

It's a process, and it evolves.

Good luck, mparshall. The road is long and twisty, but there are rest stops with chocolate chip cookies and good coffee too.