Our Son Has Chronic ITP

[catherineb]

hi our lille child was diagnosed with ITP in April 2910, he had just turned 3 in the Jan, his platelet count was 3!!! we noticed the bruises then the rash covered his body.

The docs tried prednisolone many time, which was unsuccessful, platelets olny reached 28 and dropped while he was still in treatment.

March 2011 he had a episode of unexplained internal bleeding which we were unaware off until he was violently ill and we had to get a ambulance, at this time he was in hospital for 8 days!!!

since then doctors have tried rituximab and

various attempts with immunoglobulins and combintion with prednisolone again each time unsuccessful!!! much to our disappointment, another drug is now in the pipeline but we are feeling wary as the side effects are quite horrible, the drug is ASATHIOPRINE, is anyone aware of this drug and if so what are your thoughts about it? and how would you feel anout giving it to a 5 year old child?

[AnthonyHeard Administrator ITP Support Association]

Hello Catherine, sorry to hear that your son has been having such a difficult time of it with ITP. The first thing you may wish to look at if you have not already done so is ITP Support Association website at itpsupport.org.uk. It has a good deal of useful general information on ITP and a specific section on ITP in children. Regarding Azathioprine, I was tried on it twice and I reacted very badly. I got rashes, dizziness, sickness, nausea, fever and I was taken off it . Having said that we all react to the different treatments in different ways and I have spoken to a number of ITP patients who have responded well to Azathioprine. I only got diagnosed with ITP at the age of 46 so I can only but imagine the agony that you must be going through in having to make decisions for your son who is so young. Another useful thing you might like to do is get a second opinion from an ITP medical expert. Not all doctors/specialists are ITP experts so do not be afraid to ask your doctor if he or she is such an expert on ITP. If not get a second opinion. You can get a list of all the ITP medical experts ukitpregistry.com/itpforum/...

This will give you all the details of the ITP expert closest to your address in the UK. I just hope all this helps Catherine but lease do not hesitate to come back and ask further questions. Best wishes from Anthony.

[catherineb in reply to AnthonyHeard]

HI Anthony, sorry to hear you had a tuff time on this drug,

this is our worst nightmare watching our wee man go through something like this!!! i so wish it could be me, i have had a good go at life, there is so much he has to experence and do before he grows to into an adult!! and with ITP he is very restricted.

We ahve asked for a second opinion and felt that our consultant was a bit annoyed with us, but i felt it was our right and at the end of the day he is our child and we must do what we feel is best for him!!!

we did not get to travel to the UK to speak with Dr Granger, but he kindly took time to call us one evening last year before Frank started rituximab treatment (which did not work at all). we found him to be very supportive and positive about ITP but sometimes its very difficult to hold onto this positivity!!!

i have sent him an email in the past few days with regards to the Azathioprine, I am awaiting his reply..... my heart tells me to try it and my heart is saying no, if that makes sense!!!!! i am so frightened of the long term side effects, not the ones that happen right away, but the possibility of illnessess related to taken the durg in the future!!! the big C...... thanks its great to be able to get my thoughts out , it really helps catherine

[sailor]

Hi Catherine. A very distressing account of your son's condition. I am sure I would share your concerns on any medication being administered to one so young. Unfortunatley we do not know where in the UK you live but agree whole heartedly with Anthony that you should contact the Support Group to obtain advice on a peadiatric haematologist who is a specialist in ITP. They do exist both North and South of the border even if not in plentiful supply. Then there is of course the centre of excellence which the support group will be able to advise upon or the website recommended by Anthony.

I am sure we all wish you and your son well and find the right medication that suits your son's metabilism. Keep us advised of how you progress. Sailor.

[NickyD]

Hi Catherine. Hang on in there. ITP is a horrible condition to have and you just have to have faith that something will work. As Anthony says - we all react differently to different drugs. Sometimes the list of side effects can put you off a new drug, but you may find that your son has none of them. I feel for you. I got a lot of reassurance from this support group. There is no sure fire cure for ITP - I have been going to hospital for some time now and we are still trying to find somethign that works for me. I have always found my consultant to be very understanding despite not knowing what the next step should be. It can be trial and error. That does not mean the medical staff dont know what they are doing, it just means there is no straight forward cure for ITP. NickyD

[catherineb]

hi Sailor and NIckyD

thanks for your kind words. sailor im in northern ireland and in my two years up and fown from belfast , i have only ever met two mums that kids had the condition!!!! in saying that my husbands 3 full cousins sibblings had ITP some years ago and thankfully they never looked back.

in sight of this i would say there is a generic link but i have been told time and time again that there is not?

we can only live in hope and keep tht spirits high!! sometimes this is very difficult as im sure you know.

unfortunately northern ireland has not got the same information readly available through conference etc, i can see through the support group there are gatherings quite regular in the uk, which is unfortunate for us. i have now made contact with the support group and they send me out infromation regular which is great

[JulieG in reply to catherineb]

Hi catherine I also have a five year old with chronic itp and live in northern ireland, I have never met anyone in northern ireland with a child with itp its good to know we are not alone as at times we have felt very isolated and unsure how cautious to be with our daughter.

Julie

[catherineb in reply to JulieG]

hi julie, where do you live if you mind me asking? i couldnt believe when i read your post, that your from NI! do you be seen in the RVH? Can i ask what consultant you are under? what is your little ones history, has he had it tough> or is things ok? great to know your not alone!!!!

[JulieG in reply to catherineb]

Hi Catherine our little girl has so far had minor issues she has been in hospital 3 times over night for bleeding from bruises but nothing too serious. This is probably because she is wrPped in cotton wool constantly. We live in newtownabbey co antrim and are under dr cairns at the rvh, she is going to start a 2 week course of steriods at our visit next month. Our daughters platelet count has been between 4 & 6 for about 7 months now. Do you put restrictions on your son too? Does he go out to play in school, julie,

[catherineb in reply to JulieG]

hi julie, its scary wen they say they have to be admitted, out little boy dose not know when to sit down, he is so active its exhausting to watch him and if he sits for a long period of time then we know hes not well!!!! we are under Doc McCartney in rvh! frank has classroom assistant , from 9 - 2pm daily, the school are very supportive of his care and condition, we could not be more thankful for that!! one of the consultants in Causeway put us unto muckamore abbey and got frank fitted for two helmets one for bike riding and one for more general play!! if you havent already got them your should ask for a referal, they are so much more proctive than a typical helmet, he wears a helmet for all out door activity, should he be riding his bike or not, he dose this quite willingly whcih is a help of course. he knows should he bump his head the consquences could mean he has to go into hosp or worse.. truthfully he has had more black eyes then mike tyson, no joke, there had been times that his two eyes have been closed. as h get older thankfully the knocks are getting less frequent, but then again his body is covered in brusing!!!

[JulieG in reply to catherineb]

Hi catherine what are franks platelets. Our little girl is full of energy also sometimes I think it woyld be easier to deal with if they were less active. Where do you live?

[catherineb in reply to JulieG]

the last check they were 7 , but normally they are 1 or 2!!!! i would say at this time they are probably lower because of his tirdness and bruising on his body!! not back up in rvh until the 21st april!!! we live just outside garvagh.

[JulieG in reply to catherineb]

We are back on 4 may to start steriods. I hope all goes well at your appointment . We should meet up in the future.

[JulieG in reply to catherineb]

Good luck for your appointment x

[catherineb in reply to JulieG]

thanks Julie, i have had contact from Dr granger in manchester, he is a ITP Specialist and he would not be keen to try the proposed drug, so we will see what happens! will keep you posted x def catch up in the future x

[catherineb in reply to catherineb]

hi Julie, how is you little one getting on, i realy hope there is an improvement in her platelet count? we attended the RVH and we have not been given the drug azthioprine, the iTP specialist inthe uk did not wananother imuneopressant given as the chance of success was slim, docs are now looking into another drug which is not licenced here but trials have been taking place in the uk in children, eltrombopag (spelt wrong) apparently there have been no notable side effects so far so fingers crossed. i really hope there is an improvement in yor wee one x

[JulieG in reply to catherineb]

Hi catherine , what a nightmare, is your little boy ok atm? We were up at rvh on friday last week and my little girls count was 3 she has now been given a 5 week course of steriods and we are going up again on monday for a check up. The steriods are giving her tummy cramps but apart from that she is ok. Let me know when you are up again or even when you are free we should arrange to meet up, I drive so I can meet anywhere.

[catherineb in reply to JulieG]

hi Jilie sorry i havent beenin touch, sadly our new drug has not worked at this stage either, he has been on it since the 1st june , with no positive results!!! how is your little one doing? i hope things are going well...... back up in rvh on fri, when are you next up , maybe we will be able to meet soon, take care and sorry again for not being in touch

[JulieG in reply to catherineb]

Hi Catherine, We tried the steroids and the platelets went up to 31 but dropped while still on them, We were back up on 22/6 and the platelet count was zero! they tried immunogobulin but platelets only went up to 17. They have decided to try both steroids and immunogobulin so we will start steroids on 19th and up for a check up on 20th and then up again on 23rd July for another immunoglubulin, I dont see how this is going to work if they didnt work separately. Stevie (my daughter) needs 8 teeth out so we need to find something that is going to work. I think we are a few months behind Frank were treatment is concerned. Did Frank try the combination of both? Were you up in RVH on 22nd? We thought we saw you but we were not sure. I hope they find something for Frank soon xx I am finding it hard at the moment as Stevie wants to go out and play everytime the weather is good but I have been putting her off, and now feel so sorry for her, they are missing out on so much. Do you have facebook? if so let me know and I will add you.

take care hopefully we will meet soon its just a pity we are not up on Friday too.

[catherineb in reply to JulieG]

Ah Julie thats such a pity the steriods have not worked, frank had them seperately and together and only temporary increases for a day but they fell back while still on them!!!! such a pity ur not up fri, yes im on face book catherine Bradley, really must get a chat soon x your next step prob rotuximab. we got special helmets made for frank im muckamore abbey, get a referral from your doc, they are great they proctect the back of his head right down close to his shoulders and around the ear and forehead, much better than a bike helment..... def worth while getting them, stevie can even pick the colours she wants herself, thank god frank wears his no bother. is stevie at achool, if so apply for a statement classrom assistant, Frank has one purely for his safety it puts your mind at ease whcn they head off in the morn and he carries his helmet to and from school!!! take care and god bless, x

[JulieG in reply to catherineb]

Hi catherine sorry we havent been in touch I couldnt find you on fb im julie gordon and my photo is of me and stevie sitting in a glass ball. Stevie just had teeth out without much drama she had steriods and immunobogulin together that got her count up to 100 for a few days but as with frank they fell while still on them, im not sure what our next step is but we are back up on 31st august x

[iccle in reply to JulieG]

Hi Julie and Catherine

I live in co tyrone,and have a son who is 4,and has been just diagnosed with cronic itp,we have been in and out of craigavon but are moving to belfast for more specailist treatment they say, nuero theraphies? does anyone know what they involve his platlets are 6 at moment,and suffers bad from nosebleeds, ive just read how this will have a big change in his life and sounds all very frightening,im glad to hear about helmets and maybe help at school.as he has missed a term now due to being in and out of hosp,

[mags4743]

Hello Catherine - So sorry to hear about your little boy. You must be going through hell. I have recently been diagnosed with ITP BUT I am a "senior"!

When I first joined the ITP association I was sent a list of all the drugs used for ITP (with their side effects) AZATHIOPRINE suppreses the immune system like most of the drugs and CAN cause increased risk of infection. You do need to see an ITP Specialist I think. If you do not have one where you live, there is one at Royal Manchester Children's Hospital - Dr. John Grainger.

Mags

[sailor]

Hi Catherineb. It is so good to see the response that you have had from your blog. All the advice and support is fantastic. I am sure it has given you a considerable boost and removed that feeling of isolation which we have all felt from time to time.

I would also recommend Dr John Grainger for a consultation even though it would mean a trip across here. As you will know, he is a member of the medical team at the support group and is very highly regarded within the professional world as he is with the parents and children he treats. Even better, if you can make the convention you can meet a whole group of consultants all of whom would be delighted to meet you and hopefully Dr Grainger will be there as he usually is.

In respect of a child, the difficulties of maintaining an equilalibrium between being careful and allowing them to play, learn and do all those things we have all done at his age, must be terrible. I am mindful of what I do and where I go, but do not let it rule my life. I like the idea of the helmets though. I also think one needs to maintain a humourous attitude. When I am bruising, I always blame my wife for beating me. This certainly brings some funny looks from people I do not know!!! Never had black eyes, I will have to think on that one.

Keep smiling, and if in need of a chat, call one of the ITP friends or post a blog but never feel alone.

Hope all goes well with your little one.

Sailor.

[Fifof]

Hi everyone I am so delighted to come across you all. Our son is four and a half and has chronic ITP since Dec 2010. He is really fatigued with his ITP. He is due to start school in Sept & we are very concerned. His Consultant in Dublin says he is not to go ouside to play at school & he was rarely at preschool because of his ITP. He has been treated with steroids following an episode of internal bleeding, but did not respond. Any thoughts? Has anyone tried home teaching? Thanks for any opinions as there are only a couple of kids in the Republic with chronic ITP

[Naghina7861]

I to have a daughter who's plate Ltd are at 0 she doesn't respond to medication they give her