I am so angry, upset and frustrated! Just need to vent to someone who may understand what my son is going through. Christopher had bilateral pial synangiosis done on May 31st in Boston. He suffered 6 strokes before the surgery and one 2 days after surgery. Considering this, things went pretty well....till we came home to Philadelphia.

The left side incision never healed properly. We have been to Children's Hosp in Phila almost every weekend since with problems. We even went back to Boston a couple of weeks ago. He developed a pseudomeningecele (probably not spelled correctly). This is an abnormal collection of fluid. Right in the middle of the incision, there was a lot of swelling and redness, then it started to drain. The 2nd time we went to CHOP, they actually flew us to Boston and by the time we got there, the fluid stopped draining out. We stayed for a couple days and no more leakage. MRI, cat scan and blood work shoed no signs of infection or other problems.

Get back home to Phila and the leaking began again, 2 weeks ago I looked at my son's head and there was a small hole where the swelling used to be! You could actually see the bone in his head! Went back to CHOP and they told us he had a superficial skin infection and they needed to reopen incision, clean it and stitch it back up. This procedure was done last Monday and Chris was discharged last Wednesday. This past Sunday we were back in the er at CHOP with more leakage from the same spot. They were not concerned with what was leaking out, we were told since it wasn't clear (spinal fluid) it was probably pus. They took the stitches out on Wednesday and guess what....it is still seeping! There is a big scab where the hole was and it looks like there is still a hole there which I will find out when the ret of the scab comes off.

Dr. Smith and Dr. Scott are in Switzerland at a Moyamoya convention. I have been in contact with them through email and it looks like we will be going back to Boston at the end of next week when Dr. Smith returns. I needs concrete answers as to what is going on and my son's head needs to be fixed! He is going through so much because he does not understand, he is nonverbal has down syndrome and autism, and needs sedation for every little procedure cause he won't stay still!

I'm sorry this is so long, but I thought maybe someone else out there has experienced something similar to this. I just don't know what to do! 

gosh I'm so so sorry to hear your son's having these complications. I know how hard it is when they just don't unerstand what's going on and why. Kathleen is not good with any "procedure" either she will usually get sedated befreo there's any needles. I'm glad you've been able to contact Dr. Scott and Smith. I'm glad you came ehre to vent and I hope it helps to know that we're here for you any time even if it's just to vent. I hope you can feel our prayers and ((((WARM HUGS)))). Keep us posted... so sorry...
Mary Grace

Karen -

Vent away!  I'm so sorry you and Christopher (and your whole family for that matter) have to go through this.  I don't even know what to suggest.  I would take pictures...honestly, at least on a daily basis, to show what his head looks like - in case things look different, don't behave the same way, once you see Dr. Scott and Dr. Smith.  What about consulting Dr. Steinberg?  I know he's across the country - but maybe he can help??

Just a suggestion....My thoughts are with you and Christopher.

-Shari

Thank you all for your concern, well wishes, prayers and hugs!  I am disgusted with it all, but it is my son going through all the procedures and I feel so bad for him. I do appreciate you all "listening" to me, it does help!

I love the drs. in Boston and they have been fantastic, but now I'm wondering if something went wrong during surgery that wasn't noticed. It's just strange that all tests are coming up fine, but he continues to have the same problem!

I am looking into other drs. in my area for Chris. All of his other drs. are at CHOP and we have no problem with them, it's just the neuro docs that can't seem to get this right!

And, I have been taking pictures of his head....a lot! I have sent most of them to Boston, but I understand it is hard to diagnosis something from a picture. Hopefully soon we can find out exactly what is going on. Christopher has been such a trooper through everything. He does freak out when they have to put an iv in and he always requires sedation for every little thing, but when it is over, he is just fine!

Absolutely VENT, it does help to get it out.  I'm so sorry you and your family are having so many problems.  I have two children with Downs and one has moyamoya.  Successful surgery last year.  My son is also pretty much non verbal and it is extremely difficult to know how he feels and what he is going through.  I totally feel your pain.  Hang in there, you have to keep strong to fight for your son.  I know it can be draining but you and your family are all he has.  He is very lucky to have such a caring Mom.  I wish you all the best.  Thoughts and prayers are with you and your family.

Sincerely,

Corinne

Karen, I'm glad things look a little better. I hope it fully resolves wiht out further medical intervention. It's so hard on our kids (My daughter is 14 and also has down syndrome). The communicatin difficulties really make diagnosis much more difficult. Keep us posted...
Kathleen is doing well... I see so many improvements from ehr energy to the (lack of) belly pain. I ahve seen the pain come back here and there and I'm assuming she got some gluten hidden somewhere. It's really made me look at what we eat in a different way. I have to read every label of food that I give her. So far if the label is more than a handfull of ingredients I put it back on the shelf. There is so much uneeded CRAP in our food. Kathleen can have Fritos corn chips...so I just happened to look at a store brand corn chip and compare the labels. Fritos had 3 natural ingredients, the store brand had about a paragraph full of stuff I couldn't even pronounce. Needless to say I bought the Fritos.
Mary Grace