5 yr old son with ITP

Hello all first off i am so happy to have found this forum last night.

Im sorry in advance for any incorrect terminology or if i just plain dont make sense as i am only 3 days into this nightmare.

3 days ago (sunday) my wife noticed some bruises on my sons arm. I wasnt too concerned as he's a real bruiser built like a bull ! Maybe an hour later we noticed these little red dots i thought it was a rash but i guess mothers instinct is a very powerful thing later learned that they were peticea (spelling ?) (PETECHIAE - for future reference. Sandi)

Went to the E.R and found that his platelets were 4k !!!!! I still didnt believe what was happening only two or 3 weeks he had blood work done and everything was fine. They did another test and it came back lower 3k. He was admitted ITP was expalined to us. Went in one hear and out the other. In the morning we met with the hemotologist. She was great explained everything and thinks this may have started because of a virus (upper respiratory last week and something else last month i dont remember)

Anyway he was given 2 rounds of IVIG (8hrs each) last night. Went through both treatments fine was actually in a great mood last night. This morning his levels were 43k

This morning he woke up miserable headache, throwing up and and flat out miserable. The hemotologist will be here later today. Looks like we may not get to go home

The first day and half i was frozen with fear and fighting back tears all day. Last night i got angry and went right to google. Spent most of the night reading up on ITP, i wanna learn as much about this as i can. Then i foumd this site and read a few of your stories which made me feel better by the way (not feeling like we were the only people on planet earth dealing with ITP)

Im praying that this is a one and done thing and not something he has to live with. I do understand that hes gonna be closely monitored over the next 6 months to a year.

Please excuse and spelling or rambling errors as i am typing this in his hospital room.

Im looking to eat, breath and sleep nothing but ITP info so please forward on any useful links and advice.

P.S
I didnt know there was a child section. I've been reading the adults area. Sorry for the double posts.

Frank:

ITP seems very scary at first, but the fear will subside. ITP is often acute for children and can go away in a few days, weeks or months. It can appear after an illness, vaccine or medication use, especially antibiotics.

It sounds like your son has aseptic meningitis which is a common side effect of IVIG. It usually goes away after two or three days. He has the typical symptoms of that. It can be horrible to go through and it's a shame that it happened. It can sometimes be avoided with a slower drip and a lot of hydration. Many doctors do not do this and do not recognize aseptic meningitis when it happens.

Try to stay calm. Most children and adults end up with counts that low and most do fine. Symptoms are important and as long as there is no bleeding, he should do okay.

We are here for you.

Picton and Chisholm describe a case of aseptic meningitis related to high dose intravenous immunoglobulin diagnosed on the basis of eosinophils in the cerebrospinal fluid.1 This adverse effect varies in presentation from a transient headache after the infusion to vomiting, photophobia, neck stiffness, and severe headache. The timing of symptoms may be delayed by up to seven days, though most occur within 48 hours after the treatment.2 The symptoms are not always recurrent, particularly with the milder forms. The mechanism is not understood, and any interventions are empirical.

Several measures are helpful in managing those patients who have an ongoing requirement for high dose intravenous immunoglobulin. When starting treatment we use a slow rate and a dilute solution of immunoglobulin. The first dose (of 2 g/kg total) is given over five days at a 3% solution—that is, 0.4 g/kg/day not faster than 6 g per hour. This approximates more closely the infusion rate and dilution usually given as replacement for hypogammaglobulinaemia, where complications such as aseptic meningitis are much less frequent. When the initial treatment has been uncomplicated the next infusion of 2 g/kg can be given over three days and if successful then reduced to a two day administration time. The concentration may also be increased to 12%, reducing nursing time to change the bottles. The patient needs to be encouraged to maintain a good fluid intake.

If symptoms occur over the first 48 hours of treatment with high dose intravenous immunoglobulin it is possible to use paracetamol alone or with codeine as premedication and to tailor the rate of subsequent infusions. In addition, prehydration and the use of an antihistamine—for example, cetirizine, which may influence eosinophil migration in addition to blocking H1 receptors—has been helpful in some patients.

Recognition of aseptic meningitis as an adverse reaction of high dose intravenous immunoglobulin is important as it may be treated effectively in many patients, allowing the continuation of treatment. Computed tomography and lumbar puncture may be avoided, particularly when high dose intravenous immunoglobulin is used for one of its many unlicensed indications (accounting for 60% of its use) in a setting of limited experience with this form of treatment.


www.ncbi.nlm.nih.gov/pmc/articles/PMC1112825/

Sandi thank you soo im going to bring this up to his dr

Good. Question everything. Learn as much as you can. All doctors have different approaches, some better than others. It's best to research so that you can be your son's advocate. Some doctors tend to over-treat at times, so you have to know when it's important to treat and when to ride it out. Hopefully, your son's ITP won't last long enough for you to become an expert. Many parents/patients end up knowing more than their doctor does, and some doctors will readily admit that!

He seems to be doing better. Fever came down and his headache has lessened.

Just waiting for the hemotologist to come. Hoping we can bring him home tonight.
Now that i know a little more about Itp i have soo many questions for her.

The one thats burning in my head most is.... i read somewhere that the IVIG isnt a permanent fix and only elevates the platelets temporarily. If thats the case what is happening in the body that eventually allows his body to maintain the normal platelet count after the two infusions ?

And if the IVIG is from the way i understand it not actually platelets but proteins/antibodies how does that make the white blood cells stop killing off the platelets ?

This sucks

I have not yet found a good explanation for the way that IVIG actually works. I've been on this forum and have researched ITP since 1998. I've read some articles that state that it coats the platelets and sort of protects them from destruction. White cells don't directly destroy platelets, but they do produce an antibody that tags the platelets for destruction. B cells and T cells see the platelets as a foreign cell, like bacteria or a virus. It's just a mix up in the body in which the body turns against it's own cells, hence the term autoimmune disorder. Many people with ITP also have production problems. That is another explanation.

Yes, IVIG is usually temporary. We call it a rescue treatment, or band-aid. It can last a few days or weeks. It could result in a permanent increase if the ITP was a very short acute case in the first place. If ITP is acute, it most likely would have resolved with or without treatment. There is no way to determine how that will work for your son. Only time will tell. IVIG is not a good way to manage ITP long-term and if it persists, you may have to look at other options.

When ITP resolves, it is generally because the antibodies have decreased in number and stop destroying the platelets. Treatment is not needed for that to happen, but there is no way to know how long that might take.

Well great news they let us come home tonight. I really really like our DR. she did more for my son in the 3 days we were in her care than any of the DR's he has seen in the 5 years hes alive. He gets sick very easily had asthma (cleared of that) tons of allergies the list goes on but like i said the kid is a bull anyway she also told us he has IGA deficiency which at first was another scare but after she explained it and actually got on google with us the panic subsidied.

We follow up with her on friday for a blood test and she thinks that this will be an acute case and will be a distant memory. BUT is really stressing that we need to keep him away from anything contact related so no gym or rough housing until she says so.

Sandi you were spot on with the aseptic meningitis. I mentioned it to the attending dr and nurse they actually looked confused the DR said that she never heard of it being associated with IVIG. When i told this to the hemotologist she said "yup thats what he has" but felt that it would be gone in a couple of days.

Fingers crossed till friday and beyond

frankt - hopefully you will not need IVIG for your son again but if he has an IgA deficiency they use a particular IVIG preparation. My daughter also has IgA deficiency and we were informed to make sure we made health care team aware of this if she receives IVIG. She needed it twice, the first time we were unaware and she had a horrible headache after the infusion. Second time we had to wait overnight for the specific IVIG preparation she needed but she had far fewer side effects. I hope your son has an acute case which will resolve quickly.

Terric did the second IVIG treatment resolve your daughters ITP ? Whats your take in the IGA deficiency the dr said its the most common deficiency and allot of time people have it and habe no clue. Only that they get more sinus infections and stuff of that nature

How do i make life fun for my boy during this wait and see phase ? Anyone have some suggestions on things they did for their kids ?

Frank, if you know for sure that his counts are up, you don't need to restrict his activities. If you're not sure, then you can do things like video games, movies, walks, etc. Just keep things as normal as you possibly can.

I'm glad you are home. Hopefully he won't need to be hospitalized again. They do not always hospitalize with low counts, in fact, many children do not treat at all with low counts. That is a whole other discussion.

What was his last count?

His count was 43k after the infusions. But we dont know if they will stay high i guess.

Right, you won't know. IVIG can take a few days to reach a peak count or, he may have already reached his peak count. If he starts showing symptoms again, you'll know. If there are no symptoms, that's a good sign.

I don't know if you've read this thread or not, but it's worth considering. The articles posted on this Forum are written by the top ITP specialists in the world. The PDSA works closely with them on a regular basis as far as research, treatments, and conferences. Some of them are members of the Board of Directors.

pdsa.org/forum-sp-534/12-newly-diagnosed/27819-managing-itp-in-children-update-12-4-14.html

You said that he has asthma and allergies. Children with allergies tend to acquire autoimmune disorders more often than children who do not. Allergies are a type of autoimmune dysfunction in that the body rejects whatever food or other substance that it decides it does not like. Hopefully, this is acute though. Does he have eczema by any chance?

Sandi thanks for posting the link i will check it out and if i havent read it yet im sure it will give me more insight.

We were having a great day but just noticed two or three new bruises. This shouldnt be happening if his levels were ok from yesterdays transfusions right ? Tis sucks

No eczema now but does get bouts of it....what does that mean ?

Heading back to the hospital now

We just got home. His platelets were at 104 why still bruising though

Hi Frank,

My daughter gets bruises even when her counts are over 100k. You should not worry about bruises if it is not getting bigger in size.
For us we know that counts are going down for my daughter when I start spotting petechias ( red dots) on her chest.

Shubhreta@gmail.com wrote: Hi Frank,

My daughter gets bruises even when her counts are over 100k. You should not worry about bruises if it is not getting bigger in size.
For us we know that counts are going down for my daughter when I start spotting petechias ( red dots) on her chest.

Thank you Shubhreta. How long have you been dealing with this ?

My daughter was diagnosed with ITP when she was 5 and half. She will be 7 this April and we still dealing with it!!

But still not loosing hope and doing what has to be done..... Hope and wish that it is acute for your son...and he goes into remission soon.

Shubhreta@gmail.com wrote: My daughter was diagnosed with ITP when she was 5 and half. She will be 7 this April and we still dealing with it!!

But still not loosing hope and doing what has to be done..... Hope and wish that it is acute for your son...and he goes into remission soon.

Im soo sorry that your daughter is going through this. Will add your daughter to my prayers.

Something i dont understand. His levels were at 43 or 42 when they discharged us Tuesday. Yesterday he was bruising but his levels were 104. I thought at those levels he wouldnt bruise easily ?

Cant wait to see the hemo tomorrow i know his levels are gonna be even higher than 104!!!

Frank:

People bruise. Everyone gets bruises, even with normal counts. ITP bruises from low counts tend to be large, black and do not usually hurt if you touch them. I don't think any of us really get concerned with small yellow or purple bruises. Of course those can mean that counts might be down, but they are not severe bruises.

Low counts themselves are not an emergency. You'll learn when symptoms are serious and when they are not.

I'm glad that his counts are up more, that's great! I hope they are higher tomorrow too! Keep us updated.

Sandi wrote: Frank:

People bruise. Everyone gets bruises, even with normal counts. ITP bruises from low counts tend to be large, black and do not usually hurt if you touch them. I don't think any of us really get concerned with small yellow or purple bruises. Of course those can mean that counts might be down, but they are not severe bruises.

Low counts themselves are not an emergency. You'll learn when symptoms are serious and when they are not.

I'm glad that his counts are up more, that's great! I hope they are higher tomorrow too! Keep us updated.

Sandi thanks for what you do here. Been reading up on other threads and all i can say is tour amazing in how much you care.

Im sorry if im over exaggerating or panicking to quickly.

ITP is new for you and of course you're going to be afraid. We've all been there. I'm not trying to be bossy (sometimes comes off that way), just want you to try to relax a bit. It takes time to adjust to this and a few unnecessary ER visits usually does it. You will know if something is really wrong and in the meantime, try to relax and enjoy the high counts. Usually a few petechiae are nothing to worry about, but if they increase in number and get steadily worse, that is when to act. Some of us have had petechiae with high counts so you can't always tell. I once had a chest full of purpura and my counts were 50k. I also used to get it on my hands even when counts were up because I slept with my head on my hand and cut the circulation off. It happens.

Nose bleeds and bleeding gums are a concern, but not an emergency unless the bleeding won't stop. Blood blisters in the mouth or blood in urine and stool are more serious and need attention. These are rare but do happen. Of course it's always better to be safe than sorry, so you have to do what makes you comfortable. Learning about ITP will also help you with that and I know you are doing exactly that.

PS. The reason I asked about eczema is that there is a type of thrombocytopenia that is not ITP, and eczema is one of the symptoms. I don't think you need to worry about that though, seems like your doctor is on top of it.

Not sounding bossy at all sandi honestly more like a steady capt on a ship in a hurricane.

Thanks for mentioning the eczema tomorrow we are meeting with the hemo for another count. Going to ask about it.

The one thing im obsessed with is the word acute.... i swear its become the most important word i have ever uttered. I just wanna here it attached to my sons name

Sandi what is the thrombocytopenia that wcza is associated with called so i can ask specifically?

Sandi two weeks ago he was sick (viral a bad cold i think) and his primary dr did blood work his platelets were 345k... cant believe how fast they dropped. He was also sick about a month prior to the cold pretty sure it was a sinus infection. The hemo thinks that the illness from a month ago triggered the itp and not the most recent illness. What do you think ?

Frank:

Don't worry about the eczema connection. The disorder I was thinking of would have shown up much sooner than this, usually after birth. IG levels are affected too, but your son's results do not line up with the usual that is seen with this other disorder. Your Hemo has been pretty thorough.

As far as the word 'acute'....here is what that means. Acute simply means that someone has ITP for less than a year. You cannot label someone acute until after the ITP resolves. 'Chronic' simply means longer than a year. You also cannot acquire that label until someone has had ITP longer than a year. Many, many 'chronic' patients have achieved remission at any point in time, so chronic does not mean for life. Don't get hung up on that word. It really does not mean anything.

The fact that your son's counts dropped so quickly after the illness does lead one to believe that his illness triggered this. Most of the time in children, ITP does resolve in these cases. I'd say that your son has a good shot. It could take weeks or months though. If that does not happen, it's ok. You will deal with it. I know it seems like life has been turned upside down right now, but you will all adjust. I know, the next line is, "But I don't want to adjust to that". No one does. I don't like the term "new normal" so I won't call it that. The best way to think of it is that while it may not be curable, it is treatable and manageable. Of all the hematological disorders, ITP is the easiest to manage. I don't know if that is much of a consolation, but it is a reminder that it could be worse.

Most adults who live with this lead completely normal lives. We have blips now and then, but most have families and jobs and just keep going. ITP is not debilitating and is rarely fatal. If a patient is monitored, symptoms are treated and they respond to treatment, there isn't much to worry about.

Sandi his levels were 193 !!!!!!

Dr said that over the next 3 weeks we'll have an idea if his levels are being maintained by his body as the ivig should be out of his system. She also said there would be a possibility that it could drop and may need another ivig.

Sorry if what im saying doesnt make sense