4 year old daughter recently diganosed with itp

[hartamanda]

I understand how people must feel its a struggle and we have basically given up life. My 4 year old daughter was diagnosed with ITP FEBURARY 8th and it has been a battle of up and down numbers its like other have said 2 steps forward 1 step back. just wondering if anyone has suggestions on how to deal with this as its been tough on us.

[sailor]

Morning Hartamanda. The short answer is keep positive. There are no fixes for the Mums and Dads other than time and not letting your daughter see you are concerned. The chances are you are more worried than she is. It will get better for you all as time goes by, and what is now terrible and concerning, will become accepted. Let us hope she will be one of the children that loose the ITP as quickly as it comes. BUT DO KEEP POSITIVE however hard it is.

[callas12]

Hi there.. My 4 year old daughter got diagnosed with ITP about 2 years ago just after she'dturned 2. For the first year i felt the exact same feelings your probably experiencing right now.. As Sailor has said as a parent your probably feeling worse about the situation than your daughter is.. I cant deny the treatment and test procedures arent pleasant and its harsh seeing your child having to go through it but you do have to try keep positive for her sake..

I try to let my daughter carry on with life as a normal child would do but obviously just keep a watching brief of her & keep supporting her the best way only a parent can..

[Mesh in reply to callas12]

I agree with you completely Callas12, my daughter was diagnosed 2 yrs ago this month, when she was 3. It is extremely difficult not to let it get you down as parents, but as the months pass and you realise perhaps you are in the for the long haul it gets a little easier. I get bump head phone calls 2-3 times a week from school, each time I wonder if the next will be the one we rush to the hospital with. My daughters count has nearly always stayed under 10 so always dangerous, but we just came back from Disneyland Paris. As long as you are mindful of the dangers, and how tired they can get and pace the days accordingly you can do anything within reason! Its a very frustrating disease, but our children can still be children with ITP. Remember its them that feel grotty, but are getting on with life so we need to do the same! Good Luck and best wishes for your daughter.

[Hidden in reply to callas12]

Hi there wondering how your daughter is doing?

Newly diagnosed and struggling

[AnthonyHeard Administrator ITP Support Association]

Hello hartamanda, please do have a look at the ITP Support Association website at itpsupport.org.uk if you have not already done so. It has some great information about all things ITP including a great article by Dr John Grainger one of the leading experts in childhood ITP..... itpsupport.org.uk/childhood...

Also do join the ITP Support Association as they have some great leaflets and information brochures which are very helpful to distribute to nurseries/play groups/schools even friends and family as to how to deal with ITP and those suffering from it.

[MOT2009]

Hi hartamanda, I understand and feel your frustration. My son was diagnosed last april with ITP platelet count of 3.. He was only 18 months old at the time, which he has no understanding of the illness! As a parent you do nothing but worry this is our job its what parents do. I found it physically and emotionally draining. I was googleing everything about ITP to try and get a better understanding on the whole. The ITP support association have been a great help I would recommend getting the booklets from them, they have helped a lot by putting my mind at ease. The others are right you should keep positive, as times gone on my sons platelets have improved dramatically and has recently been discharged from hospital with a platelet count of 323. But it still doesn't stop me worrying if he bangs his head and bruises appear, but I think I know my son's body now and how it works. When he is under the weather cold flu etc I know he has to take it easy. I keep on the ball still and if I notice anything not right I woudlnt think twice about getting him check. Its around 85% of children with ITP out grow it, it can take a few weeks or even months. Your daughter is young so she has age on her side. Keep positive she will get there. My little Max did xx

[MaineMom3]

Hi Hartamanda, My five year old son has had ITP for two years now and the first few months are certainly the most harrowing, as you deal with the shock and then the worry and then the emotions. However, it does get much better and you learn quickly how to manage with it. For a while we simply had to restrict activity a bit and made sure he got extra rest. We also learned his "symptoms," so we went from having blood work every other day to every few weeks and now to every couple months. We know immediately when he's "too low," and know now when he's still in the safe range but we need to be on alert. The body is really amazing and we've come to believe that it's the *idea* of ITP that is almost worse than the actual disorder! (Not to make light in ANY way - it's just that time really does help you adjust to having a child with ITP!) A great resource here in the US is pdsa.org. They also offer a lot of good literature. Also, statistically, the chances of your child having an acute (i.e. short-lived!!) diagnosis is VERY good. Most children rebound and recover permanently within 6 months. Good luck and know that you have a lot of support out here!

[lotte2121]

hi, my son was diagnosed august 11th last year, he was 22m and very boystrous and clumsy which was terrifying, his count varied between 10 and 16 for almost 2m, then all of a sudden went to 72, then up in the 2 hundreds where it stayed, he was signed of completely the begining of december. we had a tough time keeping him safe, and were very over protective whilst it was so low, i think if it had been longer we would of had to start letting him do more. i just wanted to write and say although it may seem like it will never end, it can go just as quickly as it came xxx

[Hidden in reply to lotte2121]

Thank you for this it gives me so much hope.. God willing its the same for us. Hope you're little one is well x

[Jmcleod in reply to Hidden]

Yes I'm the same way.....it's been since June of 2017 and the past month his counts have ranged from 25-47.....I'm praying for those 100's

[gr8tmumof2]

My little girl who is 6 now was diagnosed with ITP 3 years ago today. we have been threw almost every single treatment out there and my daughter wont keep platelets for more then a week. She has an IVIG and methylprednisolone every time she is under 10 and with in a week or 2 she is having another one. She is currently on a medication that usually is used for people who have had a kidney or liver transplant (MMF) and it does not seem to be working. The doctor said if she is not stable by July that they want to take her spleen. i personalty am terrified for this to happen since they can't guarantee that she will make it off the table. She is the bravest little girl i have ever met, and has been threw a heck of a lot but she loves sharing her experience with other little boys or girls so we can either give some advice or get some. She also just wants to know so more kids who share the same medical condition as do i.

[gr8tmumof2 in reply to gr8tmumof2]

I also have a Group started on Facebook for ITP (all capitals) explaining the first steps that we took to get my daughter diagnosed. if anyone would like to share there story or just have a conversation about everything that would be great.

Thanks so much everyone

[Fifof in reply to gr8tmumof2]

Hi our little boy age 5 yrs has had ITP now for over two years, with a fluctuating platelet count every other week, go as low as count of one.. with problems now with tonsils becoming enlarged and some bleeding from the tonsils as well as other symptoms when platelet count very low. Our son's Haematologist consultant prefers the approach to his medical management of no treatment unless active bleeding.. Has has had IVIG and steroids on different occasions in the past. The steroids did not work, IVIG only short term benefit, consultant prefers not to use because there is are associated risk with donor blood. No guarantee with splenectomy. It is very difficult as his platelet count is below 10 bi-weekly and he is very fatigued with no energy, for eg if out for a walk he would have to go in buggy & his younger brother & sis running around.. re School he comes home early when platelet count low cause no energy & unsafe for playing in playground. When his platelet count is low we go by his symptoms and really just sit on him... if you know what i mean to prevent him from getting an injury. He finds it very frustrating though... Some people mention a helmet for use but we feel that would make things worse for him as it is really singling him out & at the conference last year consultants said it did not prevent an internal bleed as does not prevent impact injury. we have been thinking of going to France for hol this summer, we have been advised no air travel allowed. Anyone else told this? Wondering has anyone travelled abroad with child with low platelet count, ? Would also love to hear other peoples experiences ....

[gr8tmumof2 in reply to Fifof]

Hartamanda - If you like the page it will add you to it. i only started it a few weeks ago has been slow start up since you dont find that many children with ITP

Fifof- Yes they told me never to let my daughter go on an air plain if she was under 100. They said with the pressure alone it would do some damage to there lungs or head. My daughter gets IVIG's and steroids every other week so i know the feeling. My little one is scheduled for her spleen to be removed by the end of August and im not looking forward to it at all. We have been there soo many treatments.

-Eltrombopag

-Rituximab

- Antibiotics for H. Pylori

TEVA- Amoxicillin,

Biaxin- Clarithromycin,

Mylan- Omeprazole,

Sandoz-Omeprazole

And this is what She is on no, but it does not seen to me working so far. She has been on this for almost 4 mths now

Myfortic- Mycophenolate

[Dana3 in reply to Fifof]

Hi my son is 4 years old and he has the same situation his plaletes are below 5,000. He was diagnosed on June 2015 and try all treatments and no results he is sometimes 0 counts. We are very frustrated because doctors did a bone marrow to see if they can find why but no results either. His body is all full of bruises and red points. His mouth gets holes with blood and tonsils are very bad. I'm sometimes very worry about him because we have to travel too

[Hidden in reply to gr8tmumof2]

God bless i hope your daughter is doing better .. 😊

[hartamanda]

gr8tmumof2 could you please add me to the group on facebook. thanks

i am happy to say that she has bounced back and her last platlet count was 162 so happy

[gr8tmumof2 in reply to hartamanda]

alll you have to do is like the page and you will be a member, if it would be easier for you my full Name on FB is Robyn Rohrbacher. So glad she bounced back, thats fantastic news

[Destinys_mommy9788]

I am dealing with the same thing with my five year old

[Ab36]

Hi,my son is 9 and was diagnosed back in May, an outdoor boy always involved in rough and tumble with his brother. The first couple of months were terrifying but more for me than him. I have now learnt within reason to let him get on with it and live his life. At last check his count had gone up a little but I think its dropped again as I notice the bruises again and he is complaining of tiredness.