New child diagnosis. Is this procedure normal?

Hi, I'm a slightly concerned parent as it seems many of you are. My daughter was diagnosed with ITP 3 weeks ago at A&E as she had some bruising and a lot of the little red dots. Her plate level at the time was 6. By the way she is 11 ys old. So far we have not been seen by a haematiologist ( first appointment 10 May). We have gone in once a week for a blood test to see whether the platelets are the same or not. Yesterday we got her blood test done and later I found out her platelets have dropped to 2. Her white blood cells are also slightly on the low side but they haven't given me what the actual results are. So far the paediatric doctor has stated that she doesn't need any treatment because she is not actively bleeding. She occasionally bleeds from the gums and has plenty of bruises, some large ones. My question is...why should she wait until she is heavily bleeding before any treatment? Is this normal? She is still going to school as normal and has her SATs in a week. I am concerned that she is definitely more tired having this condition. I feel I am a sitting duck waiting for something to go wrong before things get better.

Hi. My son is 21 months and was diagnosed with ITP almost 4 weeks ago. I never even heard of it before all of this, but within the past 4 weeks I have been researching it constantly. My son was at 22,000 on the day of his diagnosis and he was treated. It seems like every doctor has a different approach. Our hematologist told me if my son was older, she would not have treated because she could let an older child know that they had to take it easy. She did say that anything below 10,000 is where she would generally treat. I know what you mean when you said you feel like a sitting duck. It is the unknown that bothers me (not knowing if their platelets are lower or higher). I hope that everything works out for your daughter. Good Luck

Thank you for your support. I realy appreciate it. I am constantly trying to read up on it and research also. At least you have seen a haematologist. I am pleased he has at least got seen to and they seem to be taking it seriously. I have wondered if it is an NHS cut back thing just to sit and wait. I hope your son gets over it soon.
Thanks
Le'at

Le'at

What you are describing sounds totally normal to me. My son diagnosed 3 years ago didn't see a haematologist until 5 months in, and wasn't treated at all until then. Actually, thinking about it, he probably did SATs with a count of under 10 too!

There are two things that are worth remembering

a) treatment in the US is completely different, but no more effective in "curing" ITP. For kids, particularly, the US has a much more aggressive approach, but the outcomes are the same. I would guess that its probably driven by the fact that people pay for their health care and therefore expect treatment.

b) ITP isn't like other conditions because there isn't a guaranteed "cure" and all the treatments have risks attached - blood products like IVIg carry the risk of infection, steroids have their own problems, and some of the other drugs are just plain nasty from what I read. This being the case, good UK doctors balance the risk of the low count against the risk of the treatment and mostly decide not to treat kids unless there is troublesome bleeding (I don't mean just spots or bruises, however bad they are). This was the case before the cuts too.

I'm not ANTI treatment - my son is going to the haematologist next week to start the first stages of a treatment that will hopefully control the ITP enough to suit his very active lifestyle, But equally, a whole load of treatment early on is probably not required in most cases.

If its any comfort, kids quite frequently recover from ITP. The fact that children recover with no treatment is also a good reason for not putting them at risk with treatments. Even if they don't, they get on fine with low counts. My son has gone into school today for example, and I would guess that his count is also under 5 judging by his symptoms. He is going to scout camp at the weekend - it hasn't stopped his life. I just make sure that EVERYONE knows that his count is low and to look for things like long nosebleeds, confusion, dizziness etc. He knows that he has to tell us about some symptoms like if he ever has blood in wee or poo.

Whereabouts are you anyway? Good luck with the next blood test, and I hope things improve

Ali

I don't know if this will be much help, but I have been researching pediatric hematologists and there is one in Boston who specializes specifically in ITP. It is called the Children's Hospital and the website is childrenshospital.org. You can type ITP in and there seems to be alot of resources on it to help inform us of the ITP.

I am currently seeing a pediatric hematologist in our area at a very large hospital and seem to be ok with the results we are receiving, but it is always nice to have other options if need be (and this is all new to me). We go back on Monday to check my son's platelets again, so I can keeping my fingers crossed that they went up.

Hi Ali, I love this forum already, thank you for responding. We live in the borough of Barnet, london. I am a little more at ease with these responses. It's not so much the SATs that concern me it's the aftermarth. Her year group is going to some camping site in Kent for three days. the school does know about her condition and are also new to it. I'm a typically worried mother who will have no control over what will happen there. There are also other trips the kids will be going to such as theme parks and swimming. Not sure she will be able to go. Not only that..I will be considered the bad mother who won't allow my child to be active.

Thanks for the reassurance.
Hope treatments go well

Leat

Don't know Barnet that well, although I used to work in Southwark years ago. I also have a kid about to leave primary school this summer - they celebrate the end of school so well these days!

Just for reference, my son's consultant says

- no theme park rides with a count under 30
- no contact sports with a count under 30 (although he has lowered this to 20 over the years following a load of nagging and complaining from my footie mad son!)
- swimming is fine, but probably not diving head first!

Camping seems fine to me - my son is going to scout camp this weekend.

The tricky thing about ITP is getting the balance between safety and over-protectiveness right. I think with a count of under 10, I would be saying no tree climbing for example, but most supervised activities would be fine. I would allow climbing walls if they were harnessed on and wearing a helmet. I am not sure I get the balance right much of the time though - I always get disapproving looks if my son tells the consultant the truth about what he's been up to!

If your daughter is still low on platelets when she starts secondary school, make sure that they have a medical plan for her and go in and see as many staff as you can about it - including the office staff who do the first aid. And if she does any after school clubs, make sure that you tell them too because the school probably won't - after nearly a year of basketball club, I suddenly realised that the french teacher who took it knew nothing about my son's condition.

Ali

Thanks Ali, it's good to know the details before they run wild this summer. That is to say if we ever get a proper summer.
Didn't think about the diving part re. Swimming but will mention it to my daughter. I thought the theme park would be a no no.
I'm glad we didn't book any holiday this summer. I doubt we would get insurance.

We recently sent the medical forms in for the new school. But I will MOST DEFINITLY make sure that all her teachers know when she starts.

Thanks again for the info
Hope all goes well with your son.
Leat:)

I hope it all goes well for you. Thanks for keeping me posted.
Good Luck
Leat

alisonp wrote: a) treatment in the US is completely different, but no more effective in "curing" ITP. For kids, particularly, the US has a much more aggressive approach, but the outcomes are the same. I would guess that its probably driven by the fact that people pay for their health care and therefore expect treatment.
Ali

Alison - just so you know: In the U.S., most people get their health insurance from their jobs. Some people do not have to pay towards the premium and some do, depending on the employers requirements. We can get individual insurance or family insurance, if we are lucky enough. The monthly premiums can be quite costly for the employer depending on the type of plan.

Insurance plans can be really good, meaning that the patient does not have to pay much toward hospital stays and treatments, etc., or they can be a really crappy plan where the patient has a lot of co-pays and deductibles that they have to pay toward any medical bill.

My point: Treatment for ITP in the U.S doesn't have anything to do with the fact that we pay for it, therefore expect it. In fact, our insurance companies regularly deny treatments because they don't want to pay for them. It's all about money. People die because insurance companies deny treatments (not from ITP; cancers, bone marrow transplants, etc). Thankfully though, that is rare. I think the main reason children are treated in the U.S. is because of liability - people can sue the doctor if something bad happens and they were not offered a treatment. Doctors have to cover themselves constantly or risk a malpractice suit. I think that with ITP though, this is slowly changing since the data, as you say, shows that death from ITP is rare and treatments can sometimes do more harm.

I actually prefer the UK medical thinking for several disorders. My daughter has Graves Disease and in the UK, they do not recommend radiating and destroying the thyroid for young women. Research has shown that it can cause additional problems years down the line. In the U.S., they push for that as soon as a person is diagnosed. They push for it because it has been done that way for 50 years and no one can look at the big picture - sort of like splenectomy for ITP. Fix it for now and we won't worry about the other possibly significant risks you get stuck with for the rest of your life.

I didn't mean to get so long-winded, sorry. It just kept coming.

My apologies, I suppose I did know that health insurance was provided by employers but I had forgotten this - your reasoning makes a lot more sense than mine too.

All health care schemes seem to create illogicality. The NHS is driven by the availability of funding, and the government is really tightening its belt at the moment. We have a situation known as the postcode lottery - your health authority can decide to fund or not to fund a specific treatment based on its own funds, so if you live in one area, you could be treated with a specific drug or treatment, and half a mile away in another, you won't be. It happens a lot with cancer drugs and IVF treatment. My dad is treated with a drug for myeloma which is only available in that health authority - he is very lucky.

I think the UK is increasingly looking at not treating as a viable "treatment" - basing treatment on symptoms and not scans or counts I guess. I heard a debate on the radio the other week about breast cancer screening and how this means that a number of women go through a lot of unnecessary treatment for something that maybe wouldn't be the thing that killed them. I've heard the same debates about prostate cancer in older men. It can be the same with ITP. At least 95% of kids with ITP either get better or do fine with no treatment. So for them, treatment is an over-reaction and an unnecessary risk. The trouble is that there isn't a reliable way of identifying these children and the ones that get more significant problems. Thats why you get doctors treating when people's counts hit a specific threshold rather than looking at symptoms. Personally, I would prefer that researchers looked at a way of identifying the people who need the treatment and those who don't rather than just looking for a cure/treatment.

Dougie's doctor talks a lot about the risks of the treatment, especially using blood products - I suppose that we are very conscious of that with the history of vCJD. I don't know where the line lies. But I have been mostly happy with no-treatment as an approach for Dougie, and I do feel that approach has been in his best interests. I get quite worried for people sometimes when I read they are trying multiple drugs. sometimes at the same time for what appears to be fairly mild ITP, or splenectomy after a few weeks - sometimes it is the right thing to do, sometimes it seems mad to me.

Sorry for my long-windedness too!

Ali

Please don't apologize - you wouldn't know. It's just that we don't always get what we want or need here in the U.S. It's all controlled by the insurance companies. I was denied Rituxan years ago, and also denied upon appeal. The drug company ended up paying for it. After that, I switched insurance companies (went from my husbands work policy to my work policy) and they paid for it the next time. I obviously have a better plan. I'm also lucky because although my insurance plan has a deductable of $1,250, meaning that I have to pay that out of pocket for medical expenses at the beginning of the year, my employer pays the expenses for me. Most companies don't do that.

It's not ideal and it sounds like yours isn't either. It's a shame that people's lives come down to money. Many people have no insurance at all and they cannot get medical care if needed.

Ali, Sandi, and everyone,

This is a really good thread and comes at just the right time for us. I hate the entire treatment stuff, I must say. We live in Boston and they aggressively treat under 10K (we are at Mass Gen'l). Our daughter was diagnosed with ITP in late March and, as Ali knows, has already had 3 (!) treatments. Each was a very medicalized, overnight-at-the-hospital experiences and now, I think, probably not necessary.

Even when her platelets are very low (3,5,6) she doesn't bleed -- some bloody nose goo in the morning but that is it. Not even a real nosebleed and no icky bruising either, just light stuff. Yet three times we've been told she "had" to be treated -- twice with IV Anti D (got 10 days from each treatment) and last time with Ivig which made her very sick (throwing up, fever/chills, massive headache). So much so that a day later they gave her a cat scan and kept her overnight again. Ugh.

Now her platelets are starting to crash from a big high after ivig (down 220K in the last week) and I'm feeling -- This stinks but so what? if she isn't bleeding, why do we have to put her through another treatment? So what if her numbers are are single digits? She IS tired, and she gets more tired as the numbers fall. (I think she's been tired for years, actually....) But the treatmeInts are risky, as everyone notes, and don't get her very far.

So, she is going this weekend to the one of the few bar mitzvahs she's been invited to this year, who cares what the hematologist says! My husband agrees with me. And it seems you all do too. Yes?

I'm grateful for the collective wisdom her and how you pass it on.
Firkins (Mia's Mom)

I was starting to wonder if there were other Jewish people out there who have children with ITP.

I hope she has a lovely time at the Bar Mitzvah.
Leat

Leat,

Just wanted to say good luck with the haematologist today. Hope it all goes well - let us know

Ali

Firkins,

Hope Mia has a lovely weekend!

I don't know whether you will have read this already, but here ia a link to the UK ITP Support Association guidance on childhood ITP. Its written by my son's consultant so pretty much reflects his treatment approach for Dougie. It has a particularly useful bit about when to seek help.

www.itpsupport.org.uk/childhooditp.htm

Ali

Firkins,

Actually, given Mia's age, this one might be more useful

www.itpsupport.org.uk/teenageitp.htm

Ali

Thanks, Ali and Leat. Good luck to you today, Leat -- and with the new treatment for Dougie, Ali.

Leat -- actually, we are all Jewish but I converted --a nd Mia gets these genes from my waspy family in which all of my close relatives, including me, each have our "very own" a/i disease -- brother, dad, 2 grandfathers, uncle, cousin. And I'm sure there aremore. Think it's my genes at work here.

to higher platelets (if not high ones).

Dear Ali and Firkins,
Got the blood test and results are 17k so at least we are in the double figures now. The haematologist wasn't that thrilled that I have tried to change her diet a bit. She thinks I shouldnt have bothered. Theres no proof that it helps. But was impressed that I have read so much and am well informed about it thanks to this blog and you guys. Yes Firkins, I did try to look up if there's anything on Jewish ITP gene inheritance. Not found anything substantial, but there is such a thing from Easten European backgrounds.

Anyway, despite the haematologist's words of wisdom, I will be keeping up with the nettle tea and manuka honey as well as the crushed pomegranate juice. Yael has SAT's next week and the last thing I want is for her counts to go down and her fall asleep on one of the test papers. She will have dairy products over next week as I have requested a lactose and gluten intolerance test next Friday. And yes we will have another platelet count. Only because she has a wall climbing birthday party that she wants to go to on Sunday. Yael will only be able to go if her counts get a little higher.

The one thing I was slightly annoyed about is that nobody told me her white blood cells were getting lower. When her platelets were at 2k her whites had dropped to 3.4. Is this normal? I'm happy to say they are now back at 6.3.

Thanks for the websites.

Ali, has Dougie started treatment yet? If not, When does he start?

Hope all goes well with all of you.
Best wishes
Leat

Hi Leat and Ali,

Sending you both -- and your kids esp -- good platelet wishes. Glad that Yael is in double digits. May she stay there and be able to get rock climbing, too.

I wanted to tell you about a conversation I had this morning with Mia's hematologist as it's in line with this thread. She said a few things -- That the Ivig usually only lasts about a month in her experience so that, while she's not happy Mia's numbers came down 220K in a week, she does think next week (week 4) is typically the outside limit. (wow, I hate to put Mia through all that for a month...)

The hematologist ALSO said she is not at all adverse and is in fact open to not treating, even with levels in the single digits. For the hema, it all depends on Mia's symptoms. She agreed that the US treats very aggressively vs the UK, and the rest of the world, and also said (as Ali has noted here many times) the outcomes are not necc'y any different. She is good, in other words, with our taking what I'm going to call the "UK approach." She also wants Mia to live as normally as possible and see as little of the hospital as possible.

I was really encouraged by this and feel we can work with her now for the long haul. She doesn't feel Mia's bloody morning kleenexes are at all concerning really. She'd be more concerned with nosebleeds that don't stop, blood blisters in the mouth, etc. This conversation was a huge relief, athough of course the real relief would be Mia having normal platelets forever!

Hope the new treatment goes well for Dougie.

Leat: Interesting you found info on Eastern European backgrounds -- that's my husband's family: Poland, Russia, Lithuania. Maybe yours too? Also I am WITH YOU ON DIET. How can it not help? Our doctor said forthrightly she knows nothing about nutrition. They aren't taught that in medical school. We went to a nutritionist we love and she gave us great diet ideas/goals to streghthen and help the immune system. It's not rocket science. Much is just common sense, but very helpful. I don't know about the white blood cells...

best, Firkins

I don't know if it is common sense because it's so confusing to think about what we are trying to achieve. Do we want to strengthen the immune system? Will it then go on to kill off even more platelets with more aggression? I have no idea but it doesn't sound as easy as it at first seems.

As for the white cells, one low count won't worry them at all. All counts go up and down naturally.

Great point and something to really think about, Ann. thanks for that post. (I actually simply meant that what the nutritionist had told us was common sense -- clean foods, organic as much as possible, no fried or processed foods.) I think her general thrust, actually, now that I think about it was not to "strengthen" the immune system as much as not to overly challenge it. Let it recoup. Maybe that makes more sense. ?

thanks for the point, Ann

Hi Ann, thanks for your response. It was actually 3 counts they didn't tell me about. 3 weeks ago it was4.6 then dropped to 3.8 then a further drop to3.4 for the whites. But I'm pleased they r up again.

Firkins: the one disorder I came across is called factor XI deficiency. I have never heared of it, but thought I should google Jewish platelet disorders. I suppose I will mention it to the haematologist when I next see her in order to rule it out. As I said this ITP is all new to me...we are only a month into it.

I do believe changing diet can help and there is no harm in trying. After our appointment we went out to eat. Yael had a pizza and then a milkshake. Don't forget she hasn't had any milk products in 5 days. She really enjoyed it, but I could already see a difference....maybe she overdid it with the milkshake but half hr later she felt tired and a bit dizzy. So one never knows there might be something to it. She felt tired the rest of the afternoon.

I am happier that so far she has had no treatment although I was very concerned when her plates were at 2k, hence taking my own action of trying something....anything out the natural way.

Hope you all have a good weekend.

Leat

Leat,
I know someone (Jewish) whose son has Factor XI deficiency -- i also don't know much about it -- we have coffee scheduled but haven't gotten there yet, but her son is also limited to no contact sports, can't get banged up, etc. It's not an autoimmune disease though as I understand it.

as for food, we are mostly eating as "clean" - just meaning real foods-- and chemical free as possible but, as withyou, with a 12 yr old that is sometimes a stretch!
Firkins

This weekend is the UK ITP Support Association's Patient Convention (in York). There is a professor updating on a study that the Association funded about ITP and diet. I will let you both know what he says. Your diet changes don't sound as if they could do any harm, so why not try. Doctors don't know everything.

Ann is right to say that blood counts go up and down all the time and its normal. One of my other sons had a bad nosebleed problem a year or so back and because of Dougie they did a blood test - the first one came back slightly deficient on both platelets (140ish) and white cells (lymphocytes). So then they did another one, which came back lower on platelets (100) and very low on neutrophils (0.6) and white cells generally. This went on for a while, but eventually his white cells came back and his platelets settled at about 130. The thing is, for most people, you don't get tests all the time and you don't notice the variations.

Dougie hasn't started treatment yet - he has to go and get some more blood tests, an eye test and some other things first. Hopefully by the end of the month - we are going back on the 21st for these tests. I feel a bit torn about it. On the one hand, he really wants to forget about ITP and be able to do things without worrying and I can sympathise with that. But equally, I felt very comfortable about not treating him, so this seems like a big risk. I asked the doctor whether he would give Dougie this drug if he was his parent and he said yes without hesitation. I also asked whether he would give him the drug in preference to other drugs or doing nothing and he still said yes. The other thing that I am not looking forward to is going back to weekly blood tests - it makes me obsess about counts!

Firkins, I am really pleased to hear that you have reached an agreement with the doctor - its great to be on the same page with them.

Leat - thats a much better count, so much more reassuring than 2!

Factor XI deficiency is also known as haemophilia C. It's a clotting disorder and not a platelet disorder.

Hi Ann, Yep, sorry my mistake. Just read "an ITP sufferer has no trouble producing platelets, they r simply getting destroyed faster than being produced. In cases of haemophilia, the body has difficulty in producing the platelets."

So we don't need to worry about any inherited gene disorders.

Ali, I feel already obsessed. Hope the obsession passes.

Best wishes
Leat

Hi Ann, Yep, sorry my mistake. Just read "an ITP sufferer has no trouble producing platelets, they r simply getting destroyed faster than being produced. In cases of haemophilia, the body has difficulty in producing the platelets."

So we don't need to worry about any inherited gene disorders.

Ali, I feel already obsessed. Hope the obsession passes.

Best wishes
Leat

Hi Leat,

I found it helps to stop obsessing about counts if you look at them in 10s

under 10 - be careful
10-20 - usually ok
20-30 - pretty much a normal life
over 30 - PARTY!

So for Dougie, he is mostly in the teens, with occasional dips every couple of weeks into single digits - I don't get him tested all the time, but when he gets into single figures, he tends to bruise very badly so its easy to spot. I definitely don't get excited about the difference between 1 and 5 or 12 and 18 anymore!

Doctors tend to space out the tests once they assess someone as stable, so it does get easier to relax!

Ali

Le'at,
re: obsessing -- I wouldn't worry about it. My own experience, as an ITP mom for 7 weeks (not long!), is that, as Ali so wisely says, it will pass. I think as moms we will each "do" ITP in our own way, just as we do all other aspects of mothering in our own way. I was also very obsessed at first -- lived on the computer trying to learn or talking to friends with ITP. I feel that passing a bit which I know is good for all of us, especially my daughter. But I also know it wouldn't be passing if I hadn't done all I could to learn and wrap my head around this strange new world of ITP.

Ali's experience and attitude in terms of Dougie has been especially helpful to me. I yearn for her attitude and equanimity -- love the line in previous post about above 30 "party!" -- but i recognize it will take me time to get there, if I get there at all. Laid back I'm not, sadly, but I'm grateful for this site and her example.

As we begin to see that ITP might be with Mia for a while, I understand that I can't live on high alert all the time, can't stay obsessed. Realizing ITP isn't a sprint or marathon, but really a new way of living, has helped me calm down and let go. At the beginning, i was scared for Mia and wanted the doctors to treat her hoping ITP would just "go away." They were more than willing to oblige and, in fact, led us to treatment. Now I feel differently, our family does, and are backing off the numbers & urgency, and, for me, the obsessiveness. Luckily, our hematologist will partner with us on this which really helps. I needed to go through that obsessive phase I see in order to get beyond it.

Sorry to be long winded here. I know I'm not saying anything all of you don't already know. But it's helpful for me to put down some of this for people who understand.
Firkins