Nothing is working

My son was diagnosed with ITP earlier this month. He has been hospitalized 3 times and had three different treatments but nothing is working. He is only 4 and cant enjoy his first year of school like all the other kids in his class. We have tried IVIG and Prednisone and both only work while he is on them, as soon as he is taken off the medication his number drop dramatically, he has to have CAT scans and of course his blood drawn 2-3 times a week. I am no longer comfortable sending him anywhere without me right by his side to watch his every move. Even when he sleep i am a nervous reck that he could fall out of his bed and bump his head. I know i should try to let him be as normal as possible and not over react to everything but trying to explain to a 4 yr old boy that he cant do what he has been doing his whole life is difficult. Recently one of the hemotoligists have decided not to treat him, his lastest count was 7 and since he has no other symptoms he doesnt think he should be treated. I however am not a fan of having my son live a boring life, watching his sister and cousins run and play and flip and jump. I want my son to be the boy he was last month before i knew what ITP was. I want my son to be happy again and not worry about his CBC. I want my son to be afraid of needles and hospitals again instead of used to them. Im sure no one knows how i can get back to normal right away but the wait and see approach is not something i can do. I know there are other doctors and other treatments out there. If your reading this and you have any information on any additional treatments please share them with me. I am desprate. Any words of wisdom or encouragemnt are also appreciated. Thanks for reading my thoughts today!

I am so sorry. My son is now 20 months he has had ITP since early July and nothing works for him, even during treatment lucky if he jumps 10, he is almost always below 5. It scares me crazy but Dr's feel unless he is bleeding it is best to not treat since they are not working it just puts him at more of a risk. So I am sorry you are also going through this (wish I could say it gets easier) so far I haven't found that true BUT please know you are not alone, and most childhood cases are acute...I hope you can get some good advice, I would like some myself.

Just over a year ago we sat where both of you ladies are sitting. Except our boy was 10 when he was dx. And he had ZERO platelets for 3+ months. He also did not respond to treatments. Can I suggest you both read the natural treatments section on homeopathy? After IVIG gave our son hepatitis B, and prednisone nearly made him bleed to death we stopped all treatments. We finally found someone that does homeopathy and she treated our boy. Within weeks he had *some* platelets (10K), and after some more tweaking he started jumping up in counts. It's a slow climb but today his counts are normal and his body has/is healing so well. Please at least consider homeopathy for your precious kids. There's quite a bit of info on my boy in the natural treatments section.

Blessings.

Thank you Patti. I am curious about you saying prednisone almost made him bleed to death?? My son is usually between 0-3 when he gets marks or blisters in mouth they want us to give him a tsp 3x a day for 5 days?? She said it would "stop" the bleeding?? I will check that out for sure, I am willing to try anything SAFE!!

In most cases, Prednisone does not cause bleeding and is a very reliable, tested treatment. Even if it doesn't raise counts, it can aid bleeding symptoms by stabilizing blood vessels. I'm not sure what happened to Patti's son there, but that is not the norm.

Hi Crystal,

One of prednisone's "rare" side effects is it can cause bleeding. So when Luke had no platelets and they gave him prednisone he started bleeding out of every orifice he had. I mean EVERY orifice. They told us we should immediately RAISE his dosage of prednisone in an effort to get the bleeding to stop. Yeah, uh huh. Okay. I'm sorry, we were not born yesterday. You don't keep cramming something into someone saying more will make them better when they are bleeding everywhere. :sick: :S :ohmy:

Yep, they say it's a rare side effect but why on earth would we want to give ANYTHING to our boy that has the potential to cause low platelets when he already had none?! I still think that is the loopiest thinking around. People do it all the time here with different drugs (benadryl, prednisone, rituxan, etc.) but common sense says you don't beat a half dead horse back to life, you nurture it back to life. And thus the decision we made to use homeopathy.

We had to do some work to get the prednisone and benadryl out of Luke's body so his platelets would go up, but with persistence, we did it. No matter the drug, it stays in the body cells until you deal with it. When they say it's "out of the system" in "x" amount of time it may be out of the blood stream but it is not out of the body cells.

All that to say, we certainly didn't appreciate finding out Luke was "rare" in his reaction to prednisone. And had we been told up front of ALL the side effects we would have never agreed to even try it.

As a side note - when Luke's count were zero for so long we were using HIGH doses of powdered vit. C to keep his cell integrity strong. It doesn't prevent bleeding, but it did make the cells less likely to burst. So long as he was on it we managed to keep him from any bleeding episodes (minus the prednisone incident). If we dropped the vit. C at all he would start to get bloody noses and petichiae. We did find that using capsules did NOT work as it took too long for them to open in the gut and simply caused the runs. But powder put into applesauce goes straight into the blood stream and works well for cell integrity. When Luke started bleeding we started researching and found that prednisone actually leaches vit. C from the body. Which is something else to consider in all this.

Best wishes as you search out answers for your child.


patti

LesHigh

This might sound a bit defeatist and pessimistic.....but, I've found that the easiest way to live with my son's ITP is to accept that I have absolutely no control over it. I can't change it or improve it, I just have to go with the flow, enjoy the weeks when his count is good, live with the ones where it isn't so great.

If it helps, my son has had minimal treatment in the 2.5 years he's had ITP. During a lot of that time his count has been under 10, and its mostly been under 30. But as he doesn't have bleeding symptoms, the pros and cons of treatment are different than they would be for someone who has bleeding. None of the treatments are risk free, so we choose to live with the very very small risk of low platelets in someone who doesn't have bleeding symptoms. Nothing devastating has happened during this period, despite low platelets - he even went on scout camp one weekend with a count of 1.

My son has a mostly normal life and he is a normal kid in most respects. And there are really positive things to come out of ITP. I am thankful that its ONLY ITP, we have spent good time together in hospital waiting rooms where there is nothing better to do than to chat, and he is a much more understanding kid about other people's disabilities and differences than he would have been had he not got ITP.

Because of his age, there is a really good chance that your son will get better. So hopefully, you will just have to sit tight until that happens. But even if it doesn't, its not the end of life as you know it. I hope you are feeling less desperate today anyway.

Ali

Hang in there LesHigh. I feel like we are in the same boat. My daughter is 5, new to ITP at the end of Sept. She was 0/1 when she was diagnosed. She didn't respond to 2 rounds of IVIG, but has responded to prednisolone. She had some bleeding in the mouth after going off it completely so they put her back on and are stepping down the dose even though her counts are falling. I love this board, but I wish there were even more people who shared their journey. Watching for everything and checking everything can really leave me fried sometimes. I wish the way was highlighted more, eat this, drink that, do this, try that. I hate that this experience is so varied for everyone, I feel a little lost at times. I am very appreciative that she does have ITP though, when she was in the hospital all of the other kids in her ward had leukemia. I felt like how can I be so messed up about this when these other families are dealing with things much worse? Keep checking in LesHigh, I usually check in on the weekends, but I can do it more often if you need someone to share/vent with. Thanks to everyone else for all of the support too.

Hang in there! IVIG worked for awhile and wore off, Pred worked but was awful for my kid. She was terrible on it. We did WinRho, and had success but it too had its downside. We are now in a study and it seems to be working. My daughter has had this for 20 months and it is a rollercoaster! I look around and always say it could be worse, but my Dr once told me, it could be better. And now when people ask me, I tell them it could be better....Cause it is not fun.

But what is the main reason for so many children getting affected by ITP ?

There aren't so many, it just seems like it when you're there as you find people with the same. It's still an orphan, meaning rare, disorder.

Sylviatyson wrote: But what is the main reason for so many children getting affected by ITP ?

I'm seeing a lot of 18mos. and 5yr old's parents popping up on a very consistent basis here. And while I've not taken the time to actually write this stuff down, there does seem to be a very strong trend. In the US most kids get vaccinations at 18mos. and 5yrs. Usually the second and third in a series. And pretty much like clock work, a few months later (or very quickly after) they will have ITP. In younger children, I would venture to say that vaccinations are a huge cause of ITP. The MMR shot (the first one - never did anymore), damaged my son's immune system so badly that it led to his ITP 9yrs later. But the damage was done (and led to other physical ailments) when he got that shot. There will be a lot of detractors (probably most), but there's a very strong correlation to the two events.

And for sure, I have seen an increase in how many kids are being diagnosed just in the short time I've been on the board (year and a half). But they've also increased the number of vaccinations a child is supposed to get in recent years which means they're going to see more damaged immune systems and very likely an increase in ITP would be one of them. We all have a weak spot. Some of these kids will end up autistic, some with blood disorders, some with horrendous food allergies, etc. etc. Depending on their genetic weakness. But they ARE seeing an increase in childhood autoimmune diseases and I absolutely believe this is why.

Ann, don't bother spewing your stuff to me. You have your opinion, I have mine. Others can sort out what they think is the most logical by doing their own research. - thank you

patti wrote: Ann, don't bother spewing your stuff to me. You have your opinion, I have mine. Others can sort out what they think is the most logical by doing their own research. - thank you

That's a bit rich for someone who's just spewed her own stuff.

But you're right people can do their own logic. Your son had the MMR and 9 years later got ITP.. ho hum.

Ann wrote: That's a bit rich for someone who's just spewed her own stuff.

But you're right people can do their own logic. Your son had the MMR and 9 years later got ITP.. ho hum.

Apparently you didn't read it correctly. My son got the MMR and his immune system was damaged immediately. We spent 9yrs chasing a fix for it before he got ITP. ITP was only one thing in a long long of immune issues we'd been having since that day.

And I didn't just spew my own stuff. I gave her one plausible answer to her question.

I would LOVE to know the answer to this question also... I read the MMR but my son wasnt vaccinated around the time we discoverd the ITP. I was told he could have had a virus that triggerd it but he wasnt sick leading up to him being diagnosed either. I know they really cant tell me when or how he got it but I would really like more information on what can be done to get rid of it.

Hi LesHight2,

Immune system damage is usually done right away but can take some time to show outward signs. If your child has known food allergies (I say known b/c a lot of people have them but don't have outward signs), eczema or any other skin condition, or other recurring illness, then there is already immune system/gut damage. Everyone is different and has a different level of ability to handle internal inflammation. From what I have seen, certainly genetics plays a role in this. Once the body hits critical mass internally with inflammation it will either turn into internal disease (ie. ITP, cancers, autoimmune diseases, etc.) or external issues like outward reactions to foods (food allergies become externally reactive at this point), etc. 70-80% of the immune system is in the gut (depends on which science articles you read), so when someone has something wrong with the immune system, you have to look at the gut for why. For our boy, the MMR damaged his gut badly. There have been a number of studies done on kids that have the actual MMR virus lodge in their gut and it sits there and causes problems as if they had the measles, mumps and rubella but they have no outward symptoms of the diseases themselves. Yet, internally, they do. This is VERY common in autistic kids but does happen in others too.

Do lots of study on the gut, immune system in the gut, leaky gut, etc. and you'll start to understand how this all works together. To heal an autoimmune (or really any disease) you must heal the gut (meaning intestinal integrity, food absorption and assimilation, etc).

Our son had zero illness leading up to his ITP. If anything, we were eating healthier then we ever had having gone from a standard American diet (SAD) to a whole foods, naturally prepared, organic diet. But his gut was severely damaged 9yrs earlier by the MMR shot. For us, his ITP was nothing more then an additional symptom that his gut needed to be healed further (we had already been chasing immune issues for 9yrs prior to ITP). And that is what our focus has been in healing his ITP. Heal the gut (immune system) and you heal the ITP. It's pretty straight forward. Which, in the end, is why we have loved using homeopathy for our boy. We had done naturopathic stuff for years with supporting his body but it wasn't healing it. It was giving us status quo. The h-pathy is actually healing his gut. Which is how we got platelets finally. You can do lots of reading on the natural forum and you'll learn quite a bit about lots of this.

All the best,

patti

Wow! Thank you so much for sharing this information with me Patti. My son does have a food allergy and eczema. I would have never thought any of this could play a factor in his ITP. I will deff do some reasearch as you advised because the more information i know the better i will be able to accept this. Thanks again, your awesome!

I agree with the "it could be worse" I tell my friends and family that often. Since my son hospitalized alot last month we got to see how worse it could be. I try to think of how louck we are to only have this (ITP) but its still hard. I just hope they can give us (parents) more answers and support because even though it could be worse, this is still pretty bad.

Let's please stick to the discussion at hand without the drama, shall we?

I've never thought ITP was rare because I've known too many people who either had it, or knew someone who had it. My sister was the first one I knew in 1982. It just occurred to me as I am typing this that nearly everyone I know has, or has had, some type of illness that needed treatment of some sort. Almost everyone in my family, at work, and in my social life at one point or another has had a medical condition, from eczema to epilepsy to cancer...very wide range. ITP isn't any different...it happens like all of the other medical issues. I do hate to see children with medical problems because they should just be allowed to be kids without the dark cloud. I do think the piles of immunizations add to the numbers of children diagnosed. It's just going to get worse as time goes on and they develop more of them. Too many, too fast, bombarding the immune system.

The problem with autoimmune disorders, like ITP, is that none of them have a cure. Just like eczema, it has to be treated when it flares up. Asthma, MS, Hashimoto's....none of them can be cured, just treated. I know what you're going to say Patti, but I just can't bring myself to believe what you believe in. Differences of opinion. We'll not go there.

Bottom line - it would be nice if everyone were healthy, but it's just not so. All we can do is make lifestyle changes that make sense to us and do the best we can.

On an optimistic note, most pediatric ITP is acute. We did find vitamin C helped with vessel integrity. (Just not too much C or it loosens the stools.) We tried to keep our kid as healthy as possible otherwise, so she could better withstand whatever happened. She had IVIG early on for a count of 19, but, as she was found not to be a "bleeder" in general, and tolerated low counts, we generally didn't treat. She treated for a count of 3. We tried decadron pulse therapy. She crashed when the drugs stopped, and ended up with a nonstop nosebleed. She had to treat with IVIG for that. We know IVIG works if she is in crisis, but side effects mandate we use it only in crisis. We tried prednisone only when there was a need to raise counts for a procedure. (Prednisone irritates the stomach and, yes, can cause bleeding, but not usually, and zantac is a good protective measure.) Mostly, she didn't treat. About fifteen months after diagnosis, she started running safe counts. Months later, they were just barely normal. Months later, they were well into normal. She still has to have a count every six months, but life it good and normal. It can happen, so keep your chin up.

By the way --AARDA says 23 million in U.S. have an autoimmune disorder. Not so rare. Problem is that there is no treatment or cure for autoimmunity in general. The specific type (and there are many) and symptoms must be dealt with. ITP is sufficiently uncommon that it is an orphan disease, meaning there's not enough money in the sale of ITP drugs to make research and development worthwhile to most drug manufacturers. Some believe autoimmunity is on the rise because we live too cleanly these days -- the hygiene hypothesis. Whatever the cause, so far, the only thing to do for ITP is to deal with it, not "cure" it. I have no reason to think an immunization triggered my child's ITP, but I have no way of knowing. She did have a tetanus booster (Dt?) and meningitis vaccine a year before diagnosis. I have been cautious about vaccines when counts were low. Overall, public health is best served by immunization of the population. I postponed letting her have the Gardasil shot until she was in remission for a while and until there was a broader body of experience with the vaccine. Ultimately, she got the shots, because I want her protected. Each adult patient, and each pediatric patient's parents, must make the best decision for their circumstance.
Norma