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Benefit to diagnosis #273030
01/09/16 02:37 AM
01/09/16 02:37 AM
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nymom23 Offline OP
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nymom23  Offline OP
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Hi All,

I was wondering if there was a benefit of getting an actual diagnosis?

My daughter has multiple incidences of enthesitis in her knee, ankle, heel and middle of foot. She has been diagnosed with things like Os Good Schlatter, and Severs, growing pains and just sprains and strains.

Her older brother is suspected of having SA.

My daughter was seen by a geneticist who said she was HBLA-27 positive but that it wasn't his specialty and to go see an rhuematologist.

I was curious if there was a benefit to having an actual diagnosis? Can there be preventative measures to avoid damage to her joints? Or should we just wait and see how this plays out?

Curious what your thoughts were.

Thank you,

Kim

Last edited by nymom23; 01/09/16 02:42 AM.
Re: Benefit to diagnosis [Re: nymom23] #273037
01/09/16 11:16 PM
01/09/16 11:16 PM
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Whidbey Island WA
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WhiteCell Offline
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WhiteCell  Offline
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Depending on your location it would be worth going to a university of leading edge hospital which has a high reputation in Spondy IMHO


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Benefit to diagnosis [Re: nymom23] #273038
01/10/16 01:25 AM
01/10/16 01:25 AM
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CBMom Offline
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Yes - she should definitely see a pediatric rheumatologist. If she does have juvenile spondyloarthritis then she needs to be diagnosed and treated as soon as possible.

My daughter was diagnosed at 15 - after many years of knee "injuries." I wish we had seen a good pediatric rheumatologist sooner. She is also HLA B27+ and my husband has AS, so there was a family history.



Re: Benefit to diagnosis [Re: nymom23] #273120
01/22/16 02:14 AM
01/22/16 02:14 AM
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Ventura County, CA
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Ericsmom Offline
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The benefit of an official diagnosis is that a rheumatologist can monitor the progress of the disease as well as any joint damage. Id needed, she could be put on a drug regimen that is specific to AS and can help manage symptoms and possible prevent joint damage. Long term inflammation can cause permanent joint damage. A pediatric rheumatologist would be preferred, but since there are only something like 200 in the US, one may not be available to you. AS can cause different symptoms in juveniles vs. adults, so it's better to see a Dr. that recognizes that.

Re: Benefit to diagnosis [Re: nymom23] #273121
01/22/16 02:14 AM
01/22/16 02:14 AM
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Posts: 236
Ventura County, CA
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Ericsmom Offline
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Ventura County, CA
The benefit of an official diagnosis is that a rheumatologist can monitor the progress of the disease as well as any joint damage. If needed, she could be put on a drug regimen that is specific to AS and can help manage symptoms and possibly prevent joint damage. Long term inflammation can cause permanent joint damage. A pediatric rheumy would be preferred, but since there are only something like 200 in the US, one may not be available to you. AS can cause different symptoms in juveniles vs. adults, so it's better to see a Dr. that recognizes that.

Last edited by Ericsmom; 01/22/16 02:15 AM.

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