My Son

[Beautifullife]

Hello everyone, my 14 year old son was diagnosed with ITP when he was born, I had not one clue what they were talking about. I thought that he would get better with the medication that they were giving him. After I had him he was hospitalized for a month and a half. Since then he been on every medication that's known to bring up his count, but to no avail. He has been hospitalized every year with 1 or 2 transfusions per year. This has been very difficult for me because I'm his mom and still to this day can't really explain why or how he ended up with ITP. Other medical problems has been linked to ITP as far as, my son hearing loss, eye problems, and protein in his urine. I took him recently for a second opinion and it was all the same. This medical condition needs to be looked at more, because it's so many people living with this condition and all we want to know is will there be a cure

[oi101]

first hello and welcome to the group here is a brake down from what I understand things to be. as you know ITP is where the white blood cells attack the blood platelets. I am currently on prednisone (40mg) per day. and in the middle of a rituximab treatment that we hope will re-boot my immune system. ITP can't be cured but it can go into remission and from what I understand it's just one of those things that happen the trigger just happens to be in all of us so there is no saying why in some ITP kicks off. I hope the best for you and your son as well.

[Beautifullife in reply to oi101]

Thanks. When my son was a baby, he wasn't responding to all the medicine that they were giving him, so they decided to just do the platelets transfusion.

[mags4743]

Hi there, I have no medical knowledge, but as I understand it the platelets are killed in either the spleen or liver. As far as I know I have not heard from anyone on this site who has mentioned hearing loss, eye problems or proteiin in the urine. I see you live near Stockholm. There are some hospitals in the U.K. who perform an "indium labelled platelet test" and this show where the platelets are being destroyed. If it is the spleen there is an option of a splenectomy (removal of the spleen) but it does mean taking antibiotics for the rest of ones life.

Have you seen an ITP Specialist?

I feel for you and your son and wish you well.

Best regards

Mags

[Beautifullife in reply to mags4743]

He's been seeing a platelet specialist for 14 yrs, he actually has 2 @ 2 different hospitals. I live n Brooklyn, NY. They talked to me about the spleen, but I dn't want to do it and it dn't help the situation. Thanks so much.

[mags4743 in reply to Beautifullife]

The directory of members shows you live in Stockholm, but it doesn't matter where you are, we are all here for you. As I and CamdenGirl have said, we have never heard anyone on this site mention the other problems your son has and the article Virginia sent you gives you causes of ITP but also says there are many other illnesses which give rise to low platelets. Has your son been tested for ALPORT SYNDROME?

As NickyD says you have to keep going and not give up.

You have friends now in similar positions.

Mags

[virginiabranscom]

There are many causes for low platelets. Here is a helpful link: pdsa.org/resources/other-pl...

Sending the very best wishes for you and your son.

Virginia

[Beautifullife in reply to virginiabranscom]

Thanks so much

[Hidden]

Has your son got something else going on? There are a few other disorders that do go along with ITP sometimes, like an immune disorder or a connective tissue disorder. Apart from that I've not heard of ITP itself causing renal or sensory problems.

[Beautifullife in reply to Hidden]

No, nothing else is going on with him, for tha most part he looks and act like a healthy child, always had, he's very smart, it's just that they did so many test thru out his life and came up wit nothing his 2 specialist and peds say that tha other health conditions stems frm his platelets disorder

[NickyD]

Hi, my advice is to keep going and not to give up. I went into remission for two and a half years and the ITP came back with a count of zero. I thought I had got rid of it but I hadn't. I now know that I have to live with the condition and work within my capacity. Who is the top guy in your country dealing with ITP patients, make an appt to see them. Just hang on in there, you will get a lot of support from this group. NickyD

[Beautifullife in reply to NickyD]

Thanks so much,

[Beautifullife]

Thanks to u all, I need tha support, I hv not met anyone who has been going thru this, I feel alone, but hv to b strong for my son, my other 2 boys r fine. They were born wit no problems. It's hard when u dn't hv answers to tha y questions. It's draining to go to the hospital, miss work, but I dn't show it. This situation has broken me n a way bc I dn't know y or how this happened.

[NickyD in reply to Beautifullife]

Hi We all SO understand what you are going through and on your own it can be very scary and very daunting. That is why this site is so good to give advice and moral support. We are all holding your hand and saying you are not alone. NickyD