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#273408 - 02/25/16 07:11 PM Looking for Physician
FramingJune Offline
Registered Visitor

Registered: 02/23/16
Posts: 4
Loc: South Central Florida
My 14 year old was diagnosed a few days ago with chronic, recurrent Reiter's Syndrome and is positive for HLA-B27. He already has a host of other medical issues including Tourette Syndrome with all of the comorbid conditions, Hashimoto's Thyroiditis and Seborrhea.

I posted in the main forum with more background on what led me here:

http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=273407&#Post273407

Our pediatrician called and spoke to a specialist at All Children's. He messaged me this am and told me to call them ASAP because at the moment my son has been dealing with bladder control issues for almost two weeks. He's given a med that he said is merely a "band-aid" until he can see a specialist.

I called them and was told that they had no idea who my son was, implied they weren't taking any new patients and that they'd need to wait until the doctor got there later in the morning to speak to him about it. That she would call me back after she spoke with him.

In the late afternoon I still hadn't heard from her, so I called back and ended up with the nurse. She said she'd never heard of my son either but she would go look and be back. When she got back on the phone she said that yes both doctors had spoken and they had my son's info but that she would have to wait until the doctor was out of his clinic. That at that point they would decide on what they wanted to do (which...I don't really understand what that means; take him as a patient? Send him somewhere else?) and then they would call me back.

Which they didn't do today.

I'm not feeling good about this, especially since being HLA-B27 positive with my son's symptomology and age of onset looks like early AS and combined with Tourette Syndrome this could be very bad. I want to be someplace that's on the cutting edge - but cares enough about the families to at least return a phone call.

I don't care if we need to get on a plane - where in the world do we even go? Who treats pediatric patients with Spondylitis? Who's the best?

PLEASE help!

:-/




Edited by FramingJune (02/25/16 07:15 PM)

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#273419 - 02/28/16 08:23 AM Re: Looking for Physician [Re: FramingJune]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1269
Loc: Whidbey Island WA
I would call these people and see if there is a local medical center near you. If not, I would begin talking with them about coming up for a few days with your child for an evaluation. The goal here would be to find the pediatric Rheumatologist who can work effectively with an MD in your local area. It's worth traveling to see the best.

Call them, Explain your situation and get a couple names. Who is the best for kids? Usually everyone knows who is the very good doc. Ask about travel. Do they have lodging near the hospital at reduced rates? How long would the tests take. Make it an adventure as well. Boston is full of remarkable things to do and see.

http://www.childrenshospital.org/conditi...ms-and-services
_________________________
Pain since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU RN

~Grasp The Challenge and Succeed~

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#273442 - 03/01/16 04:58 PM Re: Looking for Physician [Re: FramingJune]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 234
Loc: Ventura County, CA
Typically, children's hospitals are the most cutting edge with regard to specialty illnesses. There are very few pediatric rheumatologists in the US- under 250 last time I looked. Some states have none, but it looks like you are lucky enough to have at least 1 near you. For what it's worth,when my son was first diagnosed at age 11 and we were referred to our local children's hospital (Los Angeles), it felt like we kind of got lost in the shuffle. His ankles were so swollen, it was hard for him to walk, so as his Mom, I of course thought it was an emergency! However, it took almost a month to get him in for his first appointment, and there were many times that I had to just keep calling because they did not call me back. However, once I got him in for his first visit, they could not have been more helpful. My son was lucky to have the same Dr. there until he went off to college, and the staff all came to know him well. I think the same thing is true at many larger hospitals. They have waiting list to get in for that initial visit, but once your child is seen and you know who to contact, it becomes much easier. I would say stick with it for now- keep calling and following up until you find out if they will see your son. You may have to travel a long distance to find another pediatric rheumy, and it is definitely worth it to see a pediatric specialist as treatment can be quite different than that for adults. Good luck!

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#273450 - 03/02/16 08:34 AM Re: Looking for Physician [Re: FramingJune]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1269
Loc: Whidbey Island WA
Ericsmom is right. Children's Hospitals lead the way in terms of safety and treatment.
_________________________
Pain since 18 years old began as Reiter's Syndrome. Diagnosed with Ank Spon 2001, Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. DSAEK Cornea Transplant 2009. Ahmed Shunt 6/2016. DSAEK November 2016.

Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2006. Cardizem 240 CD.

ICU RN

~Grasp The Challenge and Succeed~

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#273464 - 03/04/16 01:21 PM Re: Looking for Physician [Re: FramingJune]
EHP Offline
Registered Visitor

Registered: 07/29/14
Posts: 8
We also had a frustrating wait to be seen at a major hospital, but once we were in, there were a lot of advantages. They were able to do labs, xrays, and even MRI's on the same day. Results were easy to access, and there was no question about interpretations or variations on the tests. (As this was a second option, we ended up repeating and paying out of pocket for some of these tests because they didn't rely on the previous ones.) This is a huge advantage of being in a big hospital. They also are great with children, which might not happen if you ran around to do all those tests outpatient and locally. The downside was that in a teaching hospital there were usually fellows attending the appointments which at times made the room feel crowded.

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#275074 - 06/22/16 12:32 AM Re: Looking for Physician [Re: FramingJune]
DaniK Offline
First time visitor

Registered: 04/27/16
Posts: 1
Loc: New Mexico
Try Pittsburgh children's hospital if you can. My daughter developed AS at age nine but it took until she was eleven and we took her to Pittsburgh Children's hospital to get an accurate diagnosis and treatment. They have an entire floor devoted to pediatric rheumatology.

We traveled from New Mexico to Pittsburgh and they were very accommodating and recognized her swelling, symptoms etc immediately. I can't say enough good things about them. FYI: we took her to John's Hopkins the month prior and they had no clue.

Good luck.

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#275147 - 06/27/16 11:54 AM Re: Looking for Physician [Re: FramingJune]
Jessie10 Offline
Registered Visitor

Registered: 06/09/16
Posts: 56
Not sure where you are located but the local children's hospital here has 2 rheum specialists, one specializes in joint pAin and autoimmune disorders. http://www.chkd.org/Our-Doctors/Medical-Specialists/Rheumatology/Matthew-Hollander,-MD/
Good luck to you
_________________________
26 y/o female. HLA-B27 negative. Dxd AS 4/2016
Enbrel, naproxen

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#275154 - 06/27/16 07:10 PM Re: Looking for Physician [Re: FramingJune]
RAHMBA Offline
Registered Visitor

Registered: 06/27/12
Posts: 481
Loc: Los Angeles, CA
NIAMS has pediatric spondylitis docs. Also Pamela Weiss at children's hospital of Philadelphia (CHOP). Dr. Weiss has a webinar on Juvenile Spondyloarthritis that is available to watch 24/7 (skip the first 10 minutes of the webinar archive).

sorry for the delayed reply to the original post. I've been unplugged from most social media including forums lately.
_________________________
AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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