New to itp

[Sam1930]

My granddaughter was diagnosed with itp September 24, 2015. The past month she has been in the hospital three times. First time got igiv and went from 10000 to 130000 in a week but next week down to 7000. Back in the hospital with two treatments of

Ivig and up to 66000 the next week. Next week down to 14000 back in hospital with one treatment of ivig and 5 days of prednisone. Last day of prednisone on Monday and back to doctor on Tuesday. She has a phobia of blood and needles and starting therapy for help. This last time in hospital when they put in the iv she fought so hard ended up with lots of bruises even on her face. Thinking about getting second opinion from Boston Children Hospital. Has anyone received treatment there?

[sahasujit]

age of your Granddaughter?

[Sam1930 in reply to sahasujit]

9

[PixieKez]

Hi Sam. I'm sorry to hear about your granddaughter ITP is a long and personal journey but the majority of us end up all good if thats any reassurance! I havent received treatment from Boston but I do urge you to get a second opinion where possible. The 'I' in ITP stands for idiopathic which means the doctors dont really understand what causes it etc. (sorry if you know this all already!). I've found different doctors have very different opinions so it's best to explore all your options. I can't be of more help but I do want to say just keep in mind that low platelets does lower your serotonin levels and can leave you feeling really REALLY down. I tell everyone this because this element of ITP - the mental fatigue and distress - always seems to be forgotten and it is one of the areas where I felt I needed the most support. Really difficult dealing with the physical issues when you feel so down. So please keep that in mind. HTTP-5 vitamins help, and I seriously recommend a daily high dose of vitamin D. Your granddaughter is going to have to go through many needles I am sorry to say, and I hope that she is in kind and caring hands. Therapy will help and hopefully, if she's like me, she may end up getting over her phobia of needles. Wishing you all the best and hope her count settles soon.

[Sam1930]

You are so kind. Will pass info to my daughter. Going for her first appointment with psychiatrist tonight. So hard to watch her. She is a competition cheerleader and all has been taken away from her. Her art has shown her anger.

[JasonJ in reply to Sam1930]

Hi Sam, I hated needles as a kid, luckily for me I didn't have to go through this personally until now because there are a lot of them I am afraid.

Even now I don't look when they are sticking me and that is a real help because looking at it is worse than the actual pain from the needle. Sometimes I don't even feel them putting it in.

Be aware IVIG rarely helps long term its more an emergency fix to get the platelets up whilst you get some other treatment.

On a brighter note I don't think this should stop her cheerleading in the long term unless she has real problems with bleeding and is a very hard case to treat. It can take some time to find the right medicine, but there are a lot of options to go through.

For instance if my platelets are over the teens I have no symptoms what so ever, so don't think that the count has to be in the hundreds for her to be active. I was skiing and having a normal life with platelets under 5 without realising it and I haven't constrained myself after my diagnosis either.

Although I am careful with garden equipment... I had an unfortunate accident with a lawnmower last summer before getting ITP and that wouldn't be good to replicate

[Sam1930 in reply to JasonJ]

She is traumatized. They put cream on her like spinal tap and should not hurt but in her mind it does. Hoping psych

Iatrist can help. It's hard to be optimistic when platelet count up and down. She really doesn't feel too bad and says nana I want to cheer. We have taken her out of this season and she is very sad. Competition is all over us.

[swheels]

Hi, I was diagnosed when I was 2, had a splenectomy, doesn't always work and didn't cure it for me either but I did have 3 spleens found in the op report. Which may have caused it. I was just like your grand daughter and still have a phobia but it is less prominant as you have to tell yourself, they have to do this to make you better. I used to scream and fight and get stressed about it. But, she cannot go back to cheerleading till they stabilise the ITP. She is young, I am now 44, 45 beginning of Dec. I had 10 years of remission as it's called and a double vaccination set off a reaction. But with the treatments and the care of the consultants I have a normal life really, my platelets run around 20,000 to 40,000. They were 4000 at the start of treatment. I bruise easily but I'm not bleeding which is the main thing. I don't feel ill and I work in a freezer warehouse, distributing ice cream, I drive fork lift trucks and work nights. Your Grand daughter will still achieve her dream, it's a blip that needs sorting. Not all needles hurt, not all treatments are without side effects but she needs to just see that if she can be brave and let them treat her and work with them she will get that championship. My message to your Grand daughter if you wish to show it to her ' Sweetheart, I've been there and fought the nurses and doctors as I didn't want the needles I was scared too, but not all treatments involve needles. Some are tablets too. Just think to yourself it's not long just a few minutes I can do this, just close your eyes and breath deeply, talk to the nurses and ask them questions about what happens to your blood when it get taken to the lab etc. When you find out more about what they do, it becomes less scary and more interesting. They are there to make you better so that you can nail that competition. They have to see your blood to see what it's doing, they can't x ray it inside you. You may even help a younger child as they might find something in your blood that helps someone else too. Be brave darling, I still have to do it as I am still seeing a doctor, if you relax it doesn't hurt so much. If you fight and tense it can hurt more. Good luck sweetie, your dream isn't broken just on hold xx' Also I was told to drink in the morning before a blood test as the hydration makes the veins produce more blood, this means the needle won't be in for long and they can find a vein quick xx Good luck hope this helps

Sheila

[ralph12]

Check out Tufts Floating Hospital. Dr. Klement has been amazing. She is a researcher of ITP and has done great work for me in my adolescence.

There are other ways other than IVIG. Steroids seem to boost them temporarily, and IVIG takes forever and is costly.

There are other methods such as NPlate, Ethrombopag, Sirolimus that are alternatives to steroids and IVIG.