Chronic ITP

Our son has had a lot of health issues, heart surgery 2 years ago, diagnosed with Di George Syndrome, hearning issues then ITP in Jan and Feb 2010. First time was at 4, second time was at 2. He was only 3. It happened again last weekend, didn't look as bad as the other times, the pichiea is what gave it away, the bruises were not swollen like the first two times, he was at a 7. he has had to have the IVIG treatment everytime. I must say I am just heartbroken this keeps happening. He is only 4, knocked out 10 times, and here we go again with blood work to watch. This has been very hard on our son. Just wondering how many others have chronic ITP, it seems to always come after a cold.

My son is chronice, diagnosed at 11 he is now 17. His brother has a heart defect as well, one common to Di George but he has never been tested (I often have wondered if he had Di George). His heart defect is Pulmonary Atresia. He also has MS,diagnosed at age 14. He is now 20. What defect does your son have.

Ours had a high right aeortic arch wrapped around esophogus and trachea then accross right lung restricting it (issues we delt with from 5 months on thinking asthma, non stop pnemonia, then he could not swallow food, and poor weight gain) we stumbled across it after an albutoral treatment, heart rate was really high so referred to cardiologist, heard heart murmor and then found the high arch. (Surgery was not easy to get, he was in between and the pediatrician and I had to fight the doctors to listen) When they got into surgery vessels were all in wrong spot, main artory to left arm was cut because restraining underneath esophogus/trachea. That is when they tested him, he looks perfectly normal. It came back possitive. He has speech delay, but I could not get to hearing specialist with all the other issues since birth. Ear drums do not vibrate and 30 percent smaller. Still going through that, testing again in 2 weeks to see if vibrate, just took tubes out last month. The ITP threw me off, it is completely opposite of Di George Syndrome. Our hemotologist is great, open minded and says why not. There are no answers to everything. Our son had severe reflux, and then 5 food allergies by the age of 1. It is all over the place, but as you think about it, connected because things are different for him. Thank you for responding back. I just feel so lost. So many differnt things for him, now to get through the ITP with a very busy 4 year old, and I have a 2 1/2 year old girl. They fight non stop.

Wow sounds like your child's early years were very much the same as my son. He was hospitalized more than 30 times (we lost count) in the first three years just for pneumonia, dehydration, 'cardiac asthma' (which he rarely experiences now), RSV (which nearly killed him), you name it. I've heard of your son's condition...as I'm sure you are doing, I've researched so many heart defects and issues. I felt fromt he beginning understanding was my best tool.

I hope things go well for you and your son. My son is going to be 20 in June. They told us he might not make it to six months. HE's doing quite well now...five surgeries later and hopefully might get to wait to age 30 before he needs a 'tune up' surgery.

I've only known three other kids with his defect (its rare). None of them survived childhood. Its so sad. But Josiah's a fighter, and God is with these kids.

Do you have facebook? Check out his page. Not sure how much you can see, but I bet you can see his photos. www.facebook.com/josiah11

Thank you. Looks like he is doing great. It is hard as a parent to keep putting your child through it. Is your son okay now? Does he remember a lot about the hospital, surgeries so on. that is the hardest part I am dealing with, he gets angry. We are seeing a child psychologist, a great one that understands the stress on a child and parents. Technology is a blessing now, I am thankful for it each time we get a new diagnosis, meds, so on.

Thank you again and take care!!! It is nice to not feel so alone talking to others who have been through surgeries and hospitilizations.

Angela

I forgot to say it was a very high right aeortic arch vascular ring, diagnosis which wrapped around right lung also. The artory to heart is so high not protected by ribs, you know how it is let them live their life, but always as a mom, a little more added worries.

What kind of tune up surgery will your son have to have. I am very thankful his should be done.

Angela