so worried about my 21 month old

Hi everone, I've posted on here before about my son, hes almost two and he was diagnosed with ITP just a few weeks ago. I'm concerned though that there might be something more going on though, dr keeps saying everythings fine and theres nothing to worry about, Heres the whole situation, three weeks before I took my son in to the dr he would throw up in the middle of the night like once a week and be fine during the day. At one point he did have diahrea for like four days and it did go away, shortly after that he started getting bad bruises and such which is why I took him in. Blood platelets were at 11. Two days later they were at 9, they did no treatment because they said it wasnt that big of a deal. the next week he had green poop which hes never had before and didnt eat anything that would "dye" it green in any way, but doc said it was fine and not abnormal, he still gets sick at least once a week in the middle of the night, its been a couple weeks since he was diagnosed and lately his platelets have stayed at about 20 and this morning he had blood in his poop along with some little dark spots in it. Yet again he said it wasnt anything to worry about and not a big deal. I asked for a referral to go to a hematoligist and he said he would but said that I was just being an over worried parent(which kinda made me a bit mad) but anyways, do you guys think its a good idea to go to a hematoligists? I've never dealt with this kind of stuff and I'm so frustrated and worried its ridiculous. He doesnt take any medications, hasnt had any vaccines lately hes been on a diet of really simple foods, like applesauce, banannas, crackers, rice and such. He stays home with me all day so I just dont know whats going on. Any input would be great.

Hi! We were diagnosed in April after random bruising started showing up all over my daughter's body. We went to our pediatrician and had a blood test done. Here's where our situation differs- our pediatrician called with the results and immediately referred us to the Children's Hospital and a hemotologist. We were not given the option to stay with the pediatrician. Our ped did say that they get about one ITP child every year and we should go to the Drs that are use to seeing it more.

The Hemotologist at the beginning had us go twice a week, then once a week, then every other and finally now once a month.

I know how you are feeling it is a scary scary time. My daughter has always had a sensitive stomach but I have found since the ITP diagnosis something that I would never have given a second thought about now is permanently on my brain as a possible complication of ITP. I have found this site helps a ton!!!

If you do not need a referral for insurance purposes, I'd find my own hematologist and take him there. It wouldn't hurt.

Do a little reading on 'fructose malabsorption' - it might account for the bowel symptoms, and could cause some immune system issues that could impact platelet counts. His diet, while simple, is full of the exact foods that could be triggering if FM is present. There is a simple breath test a gastro doctor could give him, they do somehow give them to young children, that could determine if that is the problem.
Erica

I cannot stress enough that you can NEVER be an "over worried" parent. Being treated on the Hematology/Oncology floor at our Children's Hospital, we have heard of some pretty horrendous stories from cancer patients who were misdiagnosed by pediatricians and ended up much worse off. I love our pediatrician, but most of them are good for sore throats and colds, not specialties. I usually do not express a really strong opinion, but in this case, I would absolutely suggest finding a hematologist to consult. I can tell you that we have been dealing with our daughters ITP for 6-1/2 years and after about 6-months, not to sound egotistical, but we knew more about the condition than our pediatrician will ever know (they even admitted to this).

Good Luck,

JJ

Heck, my HEMO has told me that I know about ITP than he does. I agree with Jay.