Part of this is a vent / feeling sorry for myself part of this is wanting to see if anyone has any information. My youngest son (8 years old) was admitted to our local children's hospital last Friday. He went straight from the er to ICU for 2 days. Last Sunday we moved to a regular room and we are still there. Might get to go home on Monday but might be Tuesday. My son is starting to really really want to go home and get really cranky. It's good in a way. He is getting better which is awesome but I am starting to get cranky also ! My sister in law is staying tonight with him so I can get a break. He will be out of school for another 2-3 weeks for iv antibiotics and another 3 months for blood thinners. What was the problem ? He was diagnosed with strep last Thursday. On Thursday evening and through the night he had severe headaches and neck started hurting. Dr office and myself thought meningitis. Well the bacteria caused an abscess in his throat. His body tried to heal itself but caused a blood clot in his jugular vein and sinus cavity. It's called Lemeirre's Syndrome (not sure I spelled this right). I am stressed and concerned and scared for my son. I am tired. I have had to learn to do shots in his abdomen and how to do iv antibiotics. I know there are so so many kids with way more major medical problems . I know we are blessed to have a great childrens hospital that caught this and wonderful doctors treating him. I am just feeling down tonight. So for the required question - has anyone heard of this before ?
first off HUGS!! My son had blood sepsis at 4 months old, not the same but I know its hard feeling so helpless! As parents we want to be able to kiss all the boo boos away and when we cant its rough. All I can say is hang in there!
Oh, don't you even worry about who may have more problems, or having a hospital. You have every right to be scared, stressed, tired, and feeling down. Don't worry about how your feeling, it's valid, and completely understandable. I KNOW, I couldn't go through this with as much grace as you.
I have not heard of it, but I'm sorry you're going through this. Prayers for your son and family!! I hope you can relax and do a little something for you.
I don't have any knowledge of this syndrome, but I just want to tell you that I'm so sorry you all are going through this. Hugs to you and your little guy.
All of this weekend's problems seem so small after reading your post, mom.
Sending you strength,
Dawn
Yes, a cousin of mine almost lost her 19 year-old son to this. They were extremely lucky that one doctor in their small town hospital had heard of this and knew how to treat it. His condition was very serious, and he was sick for a long time, but he has recovered. Just like your son, he developed a sore throat and within 24 hours was in the hospital.
I heard about it on Mystery Diagnosis a few years back. It can be scary and dangerous if not treated. You have every right to be concerned, but I know it's treatable with mondo doses of antibiotics. So sorry you are going through this. Please keep us posted. Prayers to you.
ETA: You can watch the Mystery Diagnosis segments about this illness at these links:
Part 1 - https://www.youtube.com/watch?v=XmLpeEA5RSs
That's so scary! You are very blessed to have caught it in time. I have not heard of it before. You might find an online support group at
http://www.mdjunction.com/
May God heal your son quickly!
Oh my goodness! I had never before heard of this disease. My heart goes out to your family!
I have heard of this-never dealt with it-from my son:
"Yeah, it's a bacterial infection that causes infectious clots and releases lipopolysaccharide endotoxin that causes an immune response that can lead to sepsis (marked itself by additional clotting affects). The child should be fine with treatment. I'm just curious as to how people get this: it's quite rare."
From both of us-take care and God bless!
First, I know nothing about the condition - sorry. What I know about are medically complex kids from my son being dx with viral myositis at age 3, my daughter asthma at age 3 and type 1 diabetes at barely 4, brain surgery for each at 10 and 11 (two months apart, out of town) to my daughter at 17 nearly dying and now being dx with multiple issues and seeing 12 or is it 13 doctors.....I am single...my point is you have a right to be stressed (kids in hospitals can be downright nasty to the safest person - mom), angry, frustrated or anything else you are feeling....but....you have your son....I remember when my daughter, barely 4, was dx with type 1 diabetes, I was so bloody angry at everyone including God (my brother had it with many complications so I knew what was ahead for my baby)...until I stepped outside to smoke (yep started that too) and heard women talking calmly who would never take their child home....I went back to her room thankful it was only diabetes but I was still angry....my email is ____@____.com if you want to write...I am in Dallas, despise CMC, but love Cook's and UTMB Galveston...sorry this is so long...hugs to you..
