really frustrated and i cant stop stressing!

Melasund, there's a good chance that it is not that bad. But, it is important more than ever to get everything checked out. I've had "lumps" through the years that turned out to be nothing but fiborous tissue.

Same here. I hope all goes well for you. We'll be waiting!

My son, 20 years old, was recently diagnosed with ITP on June 25th and on Sunday, September 30, he was admitted to the emergency room was unable to speak because he had a brain hemmorage. I was told to say my goodbyes to my son before highly sedating him for transport to another hospital for neurosurgery. He tried all the traditional medicines but Unfortuately he is refractory with his normal platelet range below 10,000 dangerously low. He did not have any trauma to the head the bleeding happened spontaneously so ITP can be very serious. On October 3rd, he had two brain surgeries and in a medically induced coma, but still alive. ITP is the underlying cause for his hemmorage and the hospital is very concern about additional spontaneous bleeding even now his average platelet count is 6,000 so this is no joke. The doctors are at a lost on other interventions that can be used on him and I don't understand how in just 3 months he progressed to such a stage. I am almosted tempted to say that the medicine, from win row, ivig, chemo, steroids, antibiotics, the list goes on, resulted in the spontaneous bleeding. Again, ITP especially below the 10,000 level can result in bleeding. My son is fighting for his life and no one can give us any answers.

zbevans:

I am very sorry to hear about your son. I have a son about the same age and can't imagine what you must be going through.

Brain bleeds are a very real complication of ITP, but they are rare. The majority of people do okay with low counts and there is no way to know why your son did not. Sometimes a person can have antibodies that affect platelet function, so it is possible that your son was affected by that as well.

It would be unusual for any of the treatments to have caused this. We have not had any reports of increased symptoms from medications. Have your son's doctors tried N-Plate or Promacta? That might be his best bet right now. Both of those can take time to work, but have been the answer for many who seemed refractory.

Please keep us updated.

Sandi:

On September 30th, he did receive n-plate and while in the hospital on October 5th an increased dosage. Also, last year he was diagnosed with hodgkins stage 3 and went though stanford five chemo and radiation treatment. When he received the notification on February 14, 2012 he was cancer-free, he was so relieve. Originally, when given the ITP diagnosis we thought maybe a correlation between the cancer and ITP but his oncologist/hematologist did not believe it was a correlation. In terms to my emotions there isn't a vocabulary term to describe what I'm feeling...he's my first born and my heart and soul. With Hodgkins my son did not have any hospital stays; however, with ITP he has been in and out of the hospital.

Zee

Zee - has he had a bone marrow biopsy?

I hope they don't give up on N-Plate yet. Others here have reported a delayed response.

Sandi,

When he was diagnosed with Hodgkins a bone marrow biopsy was done but not with his diagnosis of ITP, his platelet count is usually dangerously low below 10,000. Right now since he in an induced coma and his cranial pressure keeps increasing will not be a good time to do a bone marrow biopsy. We do not plan on ceasing the N-plates and our hemotologist wants to try IVIG again because with the platelet transfusions his antibodies destroy within hours. The hope is that the IVIG will help him retain some platelets. Thank you for responding to my posts...I'm just trying to find answers but most of all solutions.


Sincerely,

Zee

Zee:

I sincerely hope that your son shows some improvement soon. It sounds like they are doing all they can for him.

I wondered about the BMB because sometimes chemo can damage the bone marrow. I thought that might be a possibility. Please keep us updated.

Update: my son "youth on his side" came out of his coma last Friday and the N-Plate injection kick started the production of platelets after the third treatment so much that his platelets reached a high of 597 before decreasing in numbers, 580, 479, 360, 187 (Received an n-plate injection, after almost two weeks of no injections), and 88 today. Simply, the hemotologists are trying to determine the right dosage and intervals for the n-plate transfusions. On the positive, although very weak on his right side is very lucid and began talking yesterday as well as transferred out of ICU. He will be going to a rehabilitation center and his hemotologist will be working with the center to get him his n-plate injections. I am very thankful for the n-plates and an excellent neorosurgeon.

Zbevans,
This is very good news! It sounds like he is in good hands with his doctors and they treated in time.

Good luck to you and your son and prayers for his healing.

Dee Dee

Wonderful news! It sounds like he will make a full recovery. Wishing you the best!

Hi all,
This is a late response but I am So glad to hear your son is doing better and out of coma. Hope he does make that full recovery.

I am wondering if MELASUND ever had her CBC? Can't find a thread for that.....

Hi firkins,

I don't think Melasund ever had her CBC. She sort of got scared at the last minute. Also has some other health scare that frightened her.

Hope all is fine at your home.