son with blood clot in brain

Nor - posted on 05/12/2013

Hi Karin:

I hope you are still reading your posts. I am mom of a 21/2 year old. Healthy until last April. Now she has suffered 4-5 strokes due to massive and different clots, due to severe dehydration. Gone several MRI and MRV and she is on Lovenox twice a day. We still wating for a blood test to try to determined if she has a blood disorder. We been in and out of ER for all most of April and first part of May. How is your son Ryan?
Love to chat more, and see what have you learned about this disorder. Hope we can keep on touch. Noriki Garcia.

Gretchen - posted on 08/14/2012

Hi, my name is Gretchen and we are currently sitting in the NICU while our 11 day old son is hooked up to Heparin and Phetobarbitol where we have been for the last four days. We are very scared and don't know much about blood clotting in the brain or bleeding. He is very "normal" acting as a baby but seizures on his left side is what brought us in last week. We just found out yesterday that they are due to a blood clot in his Brian along with small bleeds. They just hooked him up to the heparin last night and now we sit and wait. I noticed that some of these posts are somewhat older....does anyone have further knowledge or updates that they can share? Everything I am finding online is very scary and we are feeling so overwhelmed right now....

Karin - posted on 05/21/2011

Katarina, sorry it took so long to respond back, your message went only to my phone. I am so sorry you are going through this, I know you must be so scared! My son Ryan is doing pretty good now, it has been 6 years and a long road. His blood clot just dissolved this year and he now has a subarachnoid cyst in that area (something has to fill the space) and he has been diagnosed with Partial seizures due to the stroke the blood clot caused. That we are having some problems with, if they can't control them with meds he will have o have brain surgery. I am ot trying to scare you, Ryan had two serious hemorrhages with his clot and spent 3 weeks in ICU. I would love to talk further, the best way is to friend me and we can talk more privately. I hope your son is feeling better and hang in there I am here if you need to talk!!!!

Karin

Katarina - posted on 05/10/2011

Hi, I'm Katarina, My 6.5y son has a blood clot in his brain vein. It was just found out two weeks ago. Possibly caused by ongoing colds. We are waiting for the full thrombosis blood test results still. He had a bad headache, vomiting, high fever. It has been now two weeks since we had to call for an ambulance because he was unresponsive. Very scary. He spent two days in intensive care, he has recovered quite nicely, walking-talking, a bit of double vision still. Two injections a day, next scan in 3 months.

Karin - posted on 03/03/2010

I know how scary it is....Ryan still has his blood clot after 5 years. He developed his at 17 months and it will be 5 years on the 13th of this March. His is in his brain and he will be on the lovenox indefinitely because of size (bigger than a golf ball) and the clotting disorder. The Dr's tell me that it will not break off and that as long as there is blood flowing through it (which there is) he can live the rest of his life like that. Which is great since they tell me he will probably have it for the rest of his life. I am glad I have an idea what caused it, a combo of a sinus infection with vomiting that caused him to dehydrate to quickly and the clotting disorder and with that dehydration causes the blood to thicken and clot. The perfect storm. It has to be frustrating not knowing what caused Malise's clot and how to prevent it from happening again. With Ryan I know what steps to take to prevent another clot, my daughter Bree also has the clotting disorder. I thought more parents would have joined also, I know clots in kids are rare but I would have thought there were more of us. I am glad Malise no longer has to take any blood thinners, Ryan has developed Osteopenia because of long term use. Unfortunately it is a side effect.

Amber - posted on 03/02/2010

Malise was born with a clot in her brachial artery at 3 days old she was placed Heparin when she was in the nicu and was on Lovenox and had to get a shot twice a day in her legs for months then she was placed on asprin and eventualy taken off all blood thinners compleatly. The clot is still there but they say it has hardened and will not move. It still scares me to death every day. sometimes her arm turns purple again and i get so scared that has moved or something else is going on I argue with the doctors until they give her another ultrasound to make sure everything is okay, she has a hard time using her left arm and recently started physical therapy. Malise does not have any blood or clotting disorders and they still have no idea what caused the blood clot in the first place. It is so very rare which is why I started this group, I hope more parents join but so far it's seems like it's only the two of us.