June 7, 2012 at 4:03 pm #213
Stryder had his appointment with Shriners on Tuesday. The Dr. was concerned about his looseness and wants to see him every 6 months now, instead of just yearly. He also is talking with the geneticist about EDS types because he is showing worse symptoms and looseness than he did last visit AND he is so strange feeling. They took Xrays of his neck and he said that he had a gap somewhere and he wants the geneticist to look at it. He said that it is not a big problem with most children but it might be with an EDS child.
They looked at his chest too, and I was hoping they would have said something like he would grow out of it, but they didn’t. It’s very soft in the middle too. We go back on the 25th to see the thoracic specialist there for treatment or surgery. I’m trying not to be worried about it, but they didn’t help reassure me with anything so I can’t help it.
He is also dragging his feet when he walks 🙁 There is nothing we can do about any of it, he said. But we should see an EDS specialist. Stryder has an appointment with Dr. Francamono on October 31.June 8, 2012 at 8:52 am #2365PalominoMorganParticipant
If dragging his feet custom made AFO’s could help. Dr. Francomano was the one who wrote a Rx for me. I would never thought about it but they help a lot and prevent my subtle (when not tired) or bad (when tired) drop foot/scuffing. Those foot scuffls and drop foot led to plenty of falls and many near misses.June 8, 2012 at 11:12 am #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?June 8, 2012 at 6:47 pm #2372
Just curious, has Stryder had an ECHO and/or lung testing? I just interviewed a new pedi. for my kids yesterday and in talking about EDS and my 17 y.o. with the Marfan’s “look”, including Pectus excavatum, and she said for any kid with Pectus excavatum they always do an ECHO and lung testing. Well, news to me, cause our current, going to be OLD pedi’s never cared. Argh.
Are you seeing or going to be seen by a geneticist at OHSU? (I think you are the ones in Oregon, right?)June 8, 2012 at 6:55 pm #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 7:04 pm #2375
I haven’t heard anything good about the OHSU genetics dept with EDS either. Only have had one friend who went through them, all her doctors are at OHSU, and it was not a helpful experience. She has the Marfan’s look and they ruled that out only based on an ECHO, which maybe is good enough.
Anyway, it is good to know that Shriner’s seems to be doing a good job. Will have to keep that in mind in case we ever get to the point we need a genetic appt or other specialist for my kids.
When you come to Portland do you do it all in one day and drive home again? That is a LONG day! I know you don’t know me, and maybe you have other contacts in the Portland area, but maybe we could meet for coffee or something if you stay longer than the one day. 🙂June 8, 2012 at 7:10 pm #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 firstname.lastname@example.org 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 7:38 pm #2377
Oh, I totally understand about moving and the “start over” fears! Once you find doctors who understand/validate and are willing to learn (about the Driscoll Theory for instance) it would be very hard to start over. And, I also know all about driving 3 hours for specialist. I have been doing the drive to Seattle 4 times in about a year, first to get CCSVI diagnosed, then had CCSVI treated, then went back another time to get stents and coils placed for venous issues (related to CCSVI/bad, incorrect flow), then had to go up there to have bile duct surgery (they don’t do it here in the Portland area, go figure!). We usually spend one night too, and always the appts are EARLY. What is with that? 🙄
Speaking of your doc’s at home, did you get the cytokine testing done and have you gotten results?
Sorry to hear about your husbands job. That is sure stressful for you both, even without sick kids. Lots of decisions to sort through. My husband got laid off 11 years ago (they closed the doors at the semiconductor he worked at -no warning/total shock) and was without a job for 10 months. Hard stuff to live through, but we made it. Whew!
Hang in there!June 13, 2012 at 10:23 pm #2423mommy2seanpParticipant
I’m sure October 31st can’t come soon enough! My son just had an appointment with Dr. Castells at BWH and diagnosed with MCAS (in addition to EDS hypermobility) and we finally feel like we’re moving in the right direction. Would someone mind telling me what cytokine testing is?
TinaJune 17, 2012 at 10:30 am #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.August 18, 2012 at 6:28 pm #2775abbilouParticipant
Doernbechers Pediatrics Cardiology office were the ones to find my Daughters enlarged aorta which lead to Doernbecher’s Pediatrics Genetics diagnosing her with EDS and finding her scoliosis. They admitted they may not be our top options for the POTS, but would be willing to learn and help if needed, but luckily I had found a POTS specialist that we were waiting to get into.
We had a really good experience there after a year of other Peds Cardiologist blowing us off. I almost didn’t make an appointment at OHSU because of the things people say but I’m so grateful I did because they were the first Doctors to take us seriously and thankfully found her enlarged aorta. Before we knew it was POTS I outright asked a well known ped cardi here how do we know she won’t be one of the kids who suddenly collapases with no warning and doesn’t survive it. He laughed at me and never bothered to actually look at her heart at all. Within 5 mins of entering the OHSU cardi office they realised no one had bothered to look at her heart given all the symptoms and did it immediately and had the results read within 15 mins. Not knowing she has the enlargement could mean the difference of life and death, so I will always be grateful for 2 very caring and concerned Cardiologists at Doernbecher. Her Geneticist was equally kind with great bedside manners and very knowledgable. The Geneticist will see her yearly and will answer questions if something comes up, but they do not manage the day to day care of the patients.
We now use Dr Emelia Arden with NW Cardiology because she is a POTS specialist who is very very knowledgable in regards to EDS and the other conditions associated with POTS and EDS. She treats patients 13 and up with POTS. (she made an exception for my daughter since she was not 13 yet). She knew to look for Chari and some other things and suggested treating mast cell based on an office visit vs more tests. She hugs and holds my daughters hand which might weird some out but for the kiddo it makes her feel like someone really cares and understands.
We do need a neurologist. Not sure if we could take her to the one in Bend. So if anyone can suggest on around Portland that would be great. 🙂
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