I'm so glad you found this site. I'm sorry your son has this diagnosis I know it's very stressful for the whole family. You will find so much support and information here. Hopefully it will make this journey a little less stressful. I know you said that Stanford isn't really possible but Boston Children's Hospital has another MM specialist Dr. Scott. he did my daughter's surgeries 9 years ago and he and his whole staff are wonderful. My daughter also has Down syndrome. She was diagnosed at 5 yrs old, she just turned 14 and has had no strokes since the surgery. I would love to answer any questions you might have. Dr. Scott's information is on this site. It would be a great start to check it out and even send your sons records to him for a consult and possible surgery. Keep us posted and know that there's usually someone here who can help with any questions.
Mary Grace
mgrace5@nycap.rr.com

Thanks Pam and Mary Grace.

My husband and I were talking about it last night and we will travel wherever we have to to find the best surgeon. I love CHOP, and all of my sons other doctors are there, but I just didn't get the feeling they were "up to date" for lack of better words, on this disease. Especially since my research so far keeps mentioning Stand and Boston.

Pam, Did you consider having the surgery at CHOP? What made you go to Boston?

I see that you both went to Boston for your children's surgeries. You both also had 2 different surgeons and I assume you both felt each one was more than capable of doing this surgery.

Mary Grace, I am so happy to hear your daughter has not had any strokes since the surgery.

We have an appointment this Tuesday with Dr. Storm, neurosurgeon at CHOP. I really need them to go over everything again in terms I can understand. I will be doing more research into Boston hospital.

Pam, My son suffered a stroke last Saturday while he was with me. We just spent 3 hrs in chuck E cheese then went to eat at ihop. While in ihop, he didn't look right to me. By the time we got home (about 5 min), I thought to my self, he looks like he's having a stroke, I thought maybe I was crazy. Went to CHOP er and they took him right away, did a cat scan and had an mri on Monday. Since he had heart surgery as an infant, they wanted to have the cardiac anesthesia team there. He was released last night (Wednesday). During his stay, we did not see or speak to a neurosurgeon! We dealt with the Stroke team and Neurology doctors. Though we have an appt with a neurosurgeon this coming Tuesday, I had a funny feeling when we left CHOP that I would not be taking him there for surgery. I am pretty shocked that they are not as educated on this disease! We were told he has 3 blood vessels that are "blocked". And that he has other ones that are blocked and that there isn't anything that can be done to these. As I said before, I need to told everything again in terms I can actually understand. It was all a blur when they were telling us this at CHOP. I have looked at Children's in Boston website, printed all the info. and will be asking for CHOP to send his medical records to them asap. I am scared and want to do something as soon as possible. Thanks for your information and I'm sure I'll be talking to you and asking you more questions if you don't mind!

  I think Pam said it all very well. The whole staff at Bston makes you feel very comfortable in regards to their knowledge of MM. Kathleen was first treated a very good teaching hospital locally. a hospital that patients travel quite a distance to get to. BUT when they actually never even considered doing her surgery since they knew Dr. Scott was a much safer choice.
What Pam said proves that Dr. Scott is not only an amazing surgeon but a very caring person. Please keep us posted and ask any questions that come to mind.
Mary Grace

Hi Karen,

I don't have anything to add to what Pam & MaryGrace have already mentioned, but did want to share that my experience with Dr. Scott was very similar to Pam's.  When I first contacted Dr. Scott by email, I received the "out of office on vacation" notification back, so didn't expect to hear anything from him for at least a week, if not longer.  I was surprised then, that within 3 hours of sending that email message, I received an email back from Dr. Scott, offering his help immediately. After 2.5 years of my daughter's doctors acting as though I were a crazy mom who was inventing her symptoms, it was such a relief to finally deal with a physician who took my daughter's symptoms seriously and treated us with kindness & compassion.  Although Dr. Scott did not perform my daughter's surgeries (one of his proteges, Dr. Jodi Smith in Indianapolis did), I never hesitate to recommend that parents contact Dr. Scott to request a consultation - it was the single best thing I could have done, up to that point, on my daughter's behalf.

You & your son will be in my thoughts and prayers.

Best regards,

Jennifer

It takes about 6 hrs from bucks county pa. Not sure where you are. The ride is pretty easy. there is a very inexpensive house nearby that is run by the hospital. I believe its listed on their website. Also, I stayed with Courtney the entire time in the hospital. My husband and other daughter stayed in a hotel in Quincy. It was much cheaper than staying right there in town. We arrived on a thurs, she had an angiogran on fri, went back to the hospital mon evening and surgery was on tues. Left for home on saturday.
As far as the drinking, will he do gatorade or anything like that? I also get those water bottle packets of powder mix. Courtney loves them. I think as long as they are hydrated, it really could be any type of drink. Has he tried the chewable asprin? They are kind of like a sweet tart. My daughter won't swollow a pill so we are stricktly chewables or liquid meds.

Only one parent can stay in the room. Quincy is about 15 min from the hospital. Courtney had her angiogram in Boston.
Stubborn is definately difficult! Yikes!
Have you called Boston yet? The people in the office are great. I was so afraid to call, then again, I was afraid not to call too! It will make you feel better, especially when you go to your appt. on tues. I mean, when I started doing my research, CHOP did not have any info at all on MM on their website. The info is so helpful on the boston site, as I am sure you have seen.
The reason they do the angio there is that is how they plan the surgery. They work closely with the radiologists who do the tests.
This must be a lot for him to try to understand. There is a book available written for children. I know the link is on here somewhere. Might help?

I would call monday for sure.I would not let CHOP do angio. They will explain all that to you when you call. There is a fantastic link to Childrens Boston doing the surgery. It is so informative, and you can fastforeward thru the actual surgical parts if thats something that may bother you. It is narrated by Dr. Smith who did my daughters surgery and you actually get to meet all the docs on the team and hear their thoughts on MM.I know its on this site somewhere. I found it full of info. I will look for it and let you know where it is.

Pam and/or Mary Grace, did you have to go to Boston for a consultaion first?