daughter 13 count at 14

hello
my daughter has been diagnosed with chronic ITP for over a year now.
Her count is at 14 it was at 6 for over 3 months, Drs said they don't need to treat her if she is no bleeding. I guess we are lucky she does not have any bleeding lately.
She also has the markers, but not symtoms for Antiphospholipid antibody syndrome. her cbc is normal besides the platelets count.
I feell so scare and alone I feel like I am going to lose her. I have nobody to talk about it. I am strong for her and in front of her, but I am so scare.
she is so lovely and strong in faith, she is my hero, she in only 13 and she attending grade 10th, even though she lost 4.5 months beem in and out hospital
Please advice me how long her platelets will be low or if they ever will recover?
Thans
P.S sory for my grammar and spelling, but English is my second laguage

Welcome, Roxana! Sorry you had to find us, but you will really get a lot of answers here. You might do better posting in the teen section, too.

Sorry to hear about your daughter. Unfortunately, there is no way of telling how long her platelets will be low or if/when she'll go in to remission. So, she hasn't had any treatment at all? I'm sure more people will reply.

I see you're from Canada! Me too. I'm in NB. Where are you?

Thanks you,I am from Edmonton, AB.
Yeh the doctors are not treating her for now, they say if she start bleeding they would treat her.
So You are from NB. Iam glad to hear from a fellow canadian!!
Do you have ITP? If so what treatments are you on?

Hi Roxana,

My 13 year old son has spent the last 15 months pretty much where your daughter is in terms of counts. Mostly he sits in the early teens, sometimes dropping down below 10 for a few weeks. He's had ITP for nearly 3 years now, and we are only just considering treatment now - mostly because he can't be trusted to obey the activity restrictions set by the doctor. He doesn't really have major symptoms either.

We've only tried two treatments. The first one was 2 weeks of steroids - didn't really have any side effects, but it didn't do much for his count either. More recently we tried IVIG, which worked brilliantly in terms of counts for nearly 3 weeks but the side effects during the first 4-5 days were just horrible. We would only use it again in an emergency.

Really, I just wanted to say that watch and wait is a very viable strategy for some kids, and it can be loads better than treatment with all its side effects, hospital visits and obsession with counts. If my son would just obey the activity restrictions I would happily continue with it. I am not 100% convinced of either the need for treatment or that I am happy with any of the available treatments. I know that the worry is hard to live with sometimes, but you've just got to try and put it to the back of your mind - keep telling yourself that nothing has happened so far, and the chances of it doing so in the future are really remote.

One thing that has helped my worry levels is knowing that IVIG works in an emergency. Now I know that there is something that would help quickly, I seem to worry a lot less. Do you have something that your daughter has tried in the past that works?

Good luck in the future, I hope your daughter gets into a safer range

Ali

Hi Roxana. I know how scary things seem, but it is possible to live fine at those counts if there are no symptoms. If you really start to feel uncomfortable, you can get another opinion and find a doctor who will treat her. I did read a study once that stated that it's possible that when a person has APS antibodies, the body lowers the platelets on purpose to try to avoid a clot. It made sense to me - the body does do some miraculous things. For that reason, I prefer my counts to be below normal (I have been in remission for 7 years though).

I also have ITP and have tested positive for APS antibodies. I have had them for 30 years and have never had a clot. Because I also have Lupus, I take an aspirin daily to protect against clots, but there is really no proof that the aspirin will make a difference.

Do you happen to know which APS antibody she has? That can make a differnece. There are three of them...one is more dangerous than the others.

Your daughter can lead a very normal, productive life, in spite of her current problems. Try not to worry about losing her. Those can be managed, although it may not always be easy.

Thank you Ali
I guess you ae right it helps to know that

it helpd to know that your son is doing ok and has no mayor problems I gues I just have to get use to it. But it is hard.
has your son count ever went back up?
no she has not try anything so far the doctors said after a year they may so a bonemarrow biopsy? but her count is so low I don't think they would do it now.

Yes I guess that is the way the human body protect itself.
As far as I know they toll us that she has 3 markers for APS, but no clinical symptoms so she is not diagnosed with lupus so far.
thank you for your kind words it is very sad that such bright child is in so fragile stage. I have to wake up every half hour to check on her to make sure she is not bleeding or twitching(blood clots) they said if her count goes over 30 I don't have to do it as often. Thank God I am stay home mom

Roxana

You honestly get up every half hour in the night to check on your daughter? I put my son to bed every night and NEVER check on him until I get him up the next morning. You must be knackered! Are you sure thats necessary?

Yes, my son has had periods where his count was better - he even got into three digits on a couple of occasions in the first year. I try not to worry too much about numbers, they can change in the course of a day. If he ever got bleeding symptoms I might worry more, but luckily he doesn't. We get his count done every two or three months generally and in between times, he just gets on with his life in as normal a way as possible - and it is very nearly normal!

ITP is not generally a death sentence so try not to worry overmuch.

Ali

Ali

I do really get up and check on her, do that we had a upper intestinal bleeding lasted a couple of day and she was admited to the hospital, but no treatment was given they wanted to sse if it would stop by itself which it did.
A couple of weeks later she had a severe headache so we were admited to children hospital agind, after a ct scan was identified that shse had an inflamation on a cerebral vein. so they have suppresed her mestrual perios with depoprovera shot to avoid futher complications. Like I said when her levels are at 30 then I can sleep peacefully. Did I mention that the she is high risk for blood clots? She can go to sleep and have a strock and wake up disaable. So the Doctors have offer nurses to help with the scheduale, but at this time I can manage when she goes to school I can catch up on my sleep.
I hope soon I will be able to say thigns are better

Roxana - I have never heard of having to wake up every half hour. Something isn't making sense.

She would be more at risk for blood clots if her count were above 30, yet they are telling you that once she is above 30 she will be fine?

If they are so concerned about counts below 30, why don't they just treat her so that both of you can sleep? They are not worried about clots durng the day when she is at school?

Depo Provera is a type of birth control and those have been known to sometimes cause clots...so why would they put her on that?

Hi Sandy,
The waking up is because she is in high risk for blood clots and bleeding. when she is asleep her vulnerability is higher of not receiving help in case if need it(by the next day we can be in serious troble).
So of course she can have a blood clot at any given time of the day. God willing she would be able to have help, with more people around her to assist.
With the 3 markers for APL her condition for blood cltos will not get better with high or low platelets count. That it is what I been told as well that she does not have the syndrom just the markers at this time.
My doctors are a firm believers that " do not treat the platelets but the patient." If she has no bleeding, no bruces no petechiae, no headaches, no vonoting, no dizziness, not acute onser pain on limbs or chest, no confusion, no vition blurness, no abdominal terderness. She should be monitore via blood tests twice a week and eventually once a month.
Depo Provera was given, do that when she started hes periods she was constant bleeding with no break for 5 month. that is how we find out that she had low platelets and high iron deficiency no iron storage. we try pills then switch to depo due to APL markers and Depo has less strogen, they try no med but we ended in er she is not able to stop mestrual bleeding on her own the ped gyny is monitoring her with the group of pediatrict specialist fromm the children hospital. they have done MRI, CT SCSN, Ultra souns and she is ok. We are bless that we have some of the best Drs. in Noth america and that we have univeraal care These profesionals have been so very carefull on dealing with her. Eventually they may put her on treatment we have talked about IVNG and other Meds as well( bone marrow biopy for these all her bloob cells are normal) so rush for this yet. But for now no treatment is the best treatment
The reason why we wait for platelets above 30 is less risk of cerebral bleeding (only 2%)encounter this but still a risk. so above 30 less risk. We had blood test and her count went up to 32 on her own!!! they are redoing it to make sure numbers were ok.
Thank You

It is true that a person can clot with low counts. Good luck - I hope things get better soon.