Forum Replies Created
November 28, 2012 at 5:47 pm in reply to: Appointment with Dr. Francomano, where do we stay? #3167
We changed the date because I just couldn’t get $1000 for each ticket to get there. We are now going on Jan 15, got the flight taken care of already.
The RMH says on their site that it is for kids with at least 3 appointments in a week, so didn’t think that was an option. I did find out that there is a site called Joeshouse.org that will give discounts on lodging. It states for cancer patients but I emailed them and they will help with most illnesses.November 21, 2012 at 11:38 am in reply to: My son is sooo sick! #3159
Update from Stryder’s geneticist. He really helps me understand things. He still wants some tests done but he gave a good explanation on why a 24 hour bug has hit him for almost a week now. There is no telling how long he will be sick, but as long as we keep doing what we are doing, he will get better. Needless to say, Thanksgiving may have to be spent at home alone, but we are okay with that.
This was his response that helped me understand and relax a little:
We know that cytokine response plays a role in fighting off an infection by microbial organisms and in Stryder, this part of his immunity is abnormal. It is known that rotavirus is the most common cause of severe gastroenteritis in children. When it comes to fighting off an a viral infection, IFN-gamma is important in eliminating virus particles by activating antiviral pathways. In Stryder, this cytokine, IFN-gamma does not respond when stimulated to do so and is conceivable that Stryder has a hard time fighting off the rotavirus that is causing his gastroenteritis. The underlying cause of his immune probablem may be a component of the his overall issues that we will become clearer as we go forward.October 2, 2012 at 11:45 am in reply to: Chest Caving in…. #2986
We went to Shriner’s for a visit and were told that yes, he is very soft in the middle and that he may require surgery when he gets older-we have to check back in five years. If we did surgery before puberty it may come back. He also said that it may require two bars instead of just one but that there are some new techniques on the horizon that may benefit him more.
Here is a picture I took just the other day to show how much it goes in when he is laying flat.
(The Dr. did not see this).
Source: Uploaded by user via Angela on PinterestJuly 27, 2012 at 9:55 am in reply to: Can you help us with this symptoms review (easy checklist!) #2690
Here is the link
For those that need it 🙂July 10, 2012 at 7:30 pm in reply to: Anthony Sedlak #2570
I don’t know that it skips generations but it shows up differently in each generation. I do not have the severity that my son has, although I have had my esophagus ruptured and knee surgery twice-my grandma died of a aneurysm and my uncles have all had their stomachs ruptured, on that same side. But no one is as hypermobile as my son, not even me and I’m pretty hypermobile. We would have never connected it to one thing though. The Dr at Shriners we just saw said the same exact thing: it’s just different in everyone-especially if you hadn’t heard of it before, you don’t look for the connections.June 17, 2012 at 10:30 am in reply to: Pectus excavatum UPDATE #2443
Shriners called again and said that we need to see a local geneticist regarding his Xrays and other issues, so we are going to make an appointment. I have heard this DR (he is at Doernbechers Children’s hospital) isn’t that great with EDS, but Dr. Roy and his nurse think that since we going to see Dr. F, it will be a great way for them to communicate findings locally, so I’m agreeing to it. I’m hoping that he will also be able to do most of the testing for CCVSI, MRI’s etc but not sure yet.June 17, 2012 at 10:25 am in reply to: BLOOD REGISTRY! #2441
Just wanted to add that most labs will overnight it themselves. We’ve been to two labs and both have overnighted it with their shipments. You want to call and ask when pick up is and just go before then. Most don’t even need an appointment once you (or your doctor) have the kit.June 10, 2012 at 10:18 am in reply to: babies (nearly bald?) #2389
My son was bald for the longest time. Even now his hair is VERY thin! Every other child in our family has had lots of hair.June 8, 2012 at 7:10 pm in reply to: Pectus excavatum UPDATE #2376
That would be great! We take a couple days. His appointments are always scheduled in the Morning for some reason. Last one was at 8:45 and the next one will be at 9, so we leave the day before. I would love to get together.
My personal email is email@example.com and you can send me your phone number etc.
I decided I am not bringing my daughter to the next one haha. We have friends that live in Portland that we stay the night with and I thought about moving there because my husband is losing his job come June 22 (he works at T-Mobile and the site is closing) and he even got a job offer already but it’s for a lot less than what he is making and I’m afraid to start over with the DR’s we have since they have been so great! There are so many more variables when you have sick children.June 8, 2012 at 6:55 pm in reply to: Pectus excavatum UPDATE #2374
No he has not had either done. We go back on May 25th to see the thoracic specialist (3+ hours away) and he will do a treatment plan then, so maybe??? I have a lot of questions for him. The geneticist is also with Shriners that Stryder’s DR. will be talking with and getting back with us. We saw a geneticist at the Mayo clinic originally, but I don’t’ think we will be going to OHSU for genetics. I haven’t heard the best things about OHSU and especially EDS related.
I am glad we are going to Shriners-they seem to be caring and thoughtful and wanting to help us. We have been so very lucky with treatment and not had any problems like most do and I’m not sure exactly why. I think it is because it started with Stryder not being able to talk and now he is so loose and feels so strange to the DR.’s and then he ends up getting strange reactions to things, rashes, etc. The Dr. said that I will know more than most Dr’s and that I need to be the advocate, so no putting me down or anything I said at all, just reassurance that I am doing the right thing.
I’ll make sure to ask the thoracic specialist about those tests. Thank you 🙂June 8, 2012 at 11:12 am in reply to: Pectus excavatum UPDATE #2366
He has AFO’s 🙁
It does help a lot! He still does it, but not so much with them on.
He may need something different?May 25, 2012 at 1:35 pm in reply to: The paperback version of The Driscoll Theory is available!! #2218
Already ordered and already got it. Great resource. My mom is going to be purchasing her copy soon too!May 25, 2012 at 10:26 am in reply to: Just bought the Paperback #2211
It has part 2 and part 1 and a special eye section. I love that I can highlight in it what pertains to our situation and the things that are important. Also at the end of the section is a summary of how to treat- WONDERFUL!May 17, 2012 at 9:49 am in reply to: Digestive Issues: The Vagus Nerve Connection #2176
Do you have a link to your paper back– I have been looing nad searching every day 🙂 I so need it haha!!!!May 17, 2012 at 9:45 am in reply to: Digestive Issues: The Vagus Nerve Connection #2175
Are these problems hard to notice on MRI’s? I ask because Stryder has several problems that we have known are going on in his brain and some have been fixed with seizure meds. The final say on the disc says no problem, but when we we at the Mayo, they pulled up a still that showed white matter and it was clear in the pic. Also cyst like things on the base of his skull. I have not doen very much research on the MRIs and EDS connection, just wondering if I should. I am so lost on how to help him.
Hi, this is “new science” and as such physicians (including, and I may say “especially”) radiologists have never looked for this phenomenon before. I’ve had many PATIENTS contact me with a few shots from their MRV’s that seemed to match what they saw in The Driscoll Theory. Yup! THEY saw it! When I lectured at ISNVD, the doctors knew exactly what I meant and knew then what to look for. As I mentioned in videos and talks (and in Part 2), no one ever thought to look at what enlarged VEINS could do to our vagus nerve (before now!). So, the doctor needs to understand what they’re looking for (the images in Part 2 will help, oh, the paperback is available now, too.) ALWAYS get copies of your images (the RAW data). I will set up some way for us to gather the pertinent images along with our symptoms for publication, OK? I do believe that all EDS/POTS patients need MRI’s AND MRV’s. I think it is essential to do so to get the entire picture. Sound good?
I am on my way to purchase the paperback now 🙂 been waiting LOL.
I have CD’s of my images and the neurologist will send copies to anyone I need as well. I looked at his MRI and I’m just not good at them and can’t see anything- oh I do remember there was one thing on there that looked abnormal, but they said that he may have moved and dismissed it. They were looking for something specific like tumors though if I remember right. We have another appointment with Neurology at Doernbechers Childrens Hospital coming up, so we may get a newer MRI done at that time. They are just waiting to find the right DR.there because he is such an abnormal case.