My Daughter MAY be joining our club

[Ihurt]

My 15 yr old was diagnosed last year with P. Mostly hands and feet.

For two years now she's had a problem with one wrist in particular but the other hurts as well. Feet (achilles) bother her, and somedays she had a real hard time with her knees. BTW...my first symptom was my left wrist.

I did take her to a Rheumy (my Rheumies partner) but we didn't care for him. She wouldn't go back. I finally got her to go back and see my Rheumy today. She loved him.

Anyway, blood work is done, her exam was positive for 3 swollen joints-right wrist, two fingers, nothing in the spine (THANK YOU GOD-no spondylitis).

Preliminary dx is PA, but bloodwork if + will confirm. His words were.."three swollen joints, negative x rays, strong family history, history of P...let's see if she's HLA-B27 positive...that will make me call it". So that's what he's waiting for. He put her on Naprosyn since she's still in the Pedi age range.

I thank God it's very very mild IF she does have it, and we can catch it before it does any sort of real damage. I went 12 yrs without being dx'ed.

So far her P responds well to the creams.

Now I will move to get her eyes checked with Dr. Ross in Allentown., but will wait for the blood work to come back first.

[MikeK]

Oh, NO, Elaine! I'm so very sorry. Let's hope that it stays mild.

Hang in there and keep us posted.

Mike

[Tilldee]

Well the good thing is you know exactly what to do and getting help in the beginning is the most important thing. Keep up posted.


Prayers,
Tilldee

[pgerpup]

Oh Elaine! I'm so sorry for your daughter. I worry about my kids too. Don't you just hate this disease? I mean really, isn't it bad enough that we have it, it has to go after our kids too? I know 'it' doesn't think, but it feels like we're under attack. :mad: It just isn't fair!!

[Heatheranne1027]

Elaine,

I am sorry for your daughter. But at least you caught it early and can manage it now before it gets any worse. I will say a prayer that it stays mild for her.

[Ihurt]

You know, when I was sick with this for years (12) I didn't have all the information. For instance...I had no idea that BOTH my parents had p.

My mom stayed with me a few weeks ago. She takes beta blockers and lithium (she's bipolar). Her bust size is rather large and she sweats alot (don't mean to be too graphic). She was in so much discomfort with GUTATTE all under the fold of the breast that I actually had to medicate it with my Westcort for three days until it cleared, but the point im makin gis that I NEVER KNEW! The only thing I knew was that I had a cousin on my father's side that was covered in Plaqye, but it was always that way for him since we were kids....I never dreamed it could affect me. In my mind, "michael" had something from HIS father's side....(MY BIG DENIAL-NOT THE RIVER IN EGYPT!)

In this respect my daughter is very fortunate, much more fortunate than alot of us. She won't have to go from doc to doc, she won't have to be told it's all in her head, she will suffer alot less because A) she's medicated and B) the disease will have less of a chance to progress because she is medicated.

I too hope and pray that it stays mild, but the wrist has really flared from time to time and has actually prevented her from doing school work (she's right handed). Im hoping the wrist is not a sign of things to come. I don't have too much worry about the p...in that respect she's alot like me thus far...not really a major major problem., and the cream works.

AND....the blessing in all this is that WE HAVE THIS PLACE. For 12 years I didn't have ANY PLACE. My daughter has also been to an outing with me MikeK, Polly, Rich, their kids, Tim and Jeff, and I forget who else..I think Steve. She's talked with other children who's parents have P...she knows what to expect.

I asked her yesterday how she felt about what Dr. Ludivico told her. She said" I can be treated with medicine...Im not gonna die from it, it's no big deal". I guess her attitutde is healthy enough about it.

Dr. Ludivico made it a point to explain to her that "it wasn't her moms fault, and it's just something inherited, but that because she was so young she was probably not going to suffer like her mom does.

NOW..we wait (me on pins and needles) for her blood work to come back. Thanks for being here guys.....this could be a whole lot worse without you all.

Thanks for the prayers! I love you all!
Elaine

[ouchyk]

Elaine,

Geesh, this is awful. Let's hope that she'll be okay and not have PA, was she dx with fibro? I can't remember..I'm glad you were able to convince her to see your rheumy and that they clicked. So important!

sorry it took so long for you to be dx, I walked in one door and out the other scratching my head wondering what soriasis arthritis was...I didn't even know how to spell it. :o

This is one of my reasons for going to CHD. Its so imperative that this disease be recognized early, researched, and better meds/treatments developed so our kids won't suffer.

You are handling it so much better than I would...I'd have my head in the toilet. sorry gross.

Sending you my best. hang in there.

Karen

[Ihurt]

I don't want to fall apart about it, it would scare her. She always watches my reaction to things. Inside I could cringe! I remember hating my father so much when I learned I had this disease (always assumed it was ONLY his genes that I got this from-never knew about my mother until recently)

Im not going to jump to any conclusions yet until the blood work is back. I don't have all my facts yet...most but not all. My daughter has been overwieght most of her life as well and her father was bi polar (as well as my mom) so I also asked that he do a thyroid work up.

Your right, the work at CHD is so LIFELINE important. Your right, failing to be dx'ed in those years was central to me having the severe damage that I do. We all need to educate educate and educate. Many physicians confuse the symptoms with other cluster like symptoms of Lymes disease, CFS, Fibro, etc.

No, she was never diagnosed with Fibro and her energy level is still good THANK GOD. From time to time she crashes but I atrribute that to the ungodly hours she has to get up for school. She has to BE at school at 7...which means shes up at 5 everyday.

Thanks again Karen...your support means alot to me.

Elaine

[Re]

Elaine I am sooo sorry to hear about your daughter. You are getting her help early. They can start her on meds if she has it and there are new things coming down the line. We will all be praying for her as well as all our kids and ourselves etc. We all love ya so hang in there. sounds like your daughter is a strong girl and I am sure she got her strength from you. Keep us posted.
Re

[MikeK]

Elaine,

I've had the pleasure of meeting your daughter. It hurts to know that she may have PA. (It hurts when any child has PA; it's even worse when you know the kid who may have it.) I know that you know this already, but don't hesiate to get a second opinion. Even it if means coming in to see Dr. Lahita. Just this morning, I responded to a post from another mom who thinks that her toddler daughter might have PA. One of the things that I recommended is that she take her daughter to see a pediatric rheumy. I just checked American College of Rheumatology's website -- there are several pediatric rheumies in Philly. Yes, I know that it's not exactly around the corner, but it can't hurt to get a second (or even a third) opinion from one!

Listing Pediatric or Pediatric Rheumatology Board Certified Members
Listing Members Providing Patient Care

Basil M. Fathalla, MD
Peds Rheumatology
St Christopher Hospital
Erie Ave. at Front St
Philadelphia, PA 19134
Ofc: 215-4275094
Fax: 215-4276693
Time Spent: Patient Care, Teaching, Research-Clinical
Disciplines: Pediatric Rheumatology, Pediatrics
Locations: None
Member Type: Int'l Fellow Member

Terri H. Finkel, MD, PhD
Childrens Hosp of PA PTD
Abramson Research Bldg 1102
3615 Civic Ctr Blvd
Philadelphia, PA 19104
Ofc: 215-590-7180
Fax: 215-590-1258
Time Spent: Research-Basic Science, Patient Care, Teaching
Disciplines: Pediatric Rheumatology, Pediatrics
Locations: Hospital
Member Type: Fellow Member

Donald P. Goldsmith, MD
Section of Rheumatology
St Christopher Hosp Children
Erie Ave at Front St
Philadelphia, PA 19134-1095
Ofc: 215-427-5094
Fax: 215-427-6693
Time Spent: Patient Care, Research-Clinical, Teaching
Disciplines: Pediatrics, Pediatric Rheumatology
Member Type: Fellow Member

Barbara Joebstl, MD
7133 Rosevelt Blvd
Philadelphia, PA 19149
Ofc: 215-333-3311
Fax: 215-333-9958
Time Spent: Patient Care
Disciplines: Internal Medicine, Adult Rheumatology, Pediatric Rheumatology
Locations: Practice-Multiple Specialty Group
Member Type: Fellow Member

Svetlana Lvovich, DO
Department of Rheumatology
St Christopher's Hospfor Child
Erie Ave at Front St
Philadelphia, PA 19134
Ofc: 215-427-5927
Fax: 215-427-6693
Time Spent: Patient Care, Research-Clinical, Student
Disciplines: Pediatric Rheumatology, Pediatrics, Researcher-Clinical
Locations: Hospital, Other
Member Type: Trainee Member

David D. Sherry, MD
CHOP
3405 Civic Center Blvd
Philadelphia, PA 19104-4302
Ofc: 215-590-2547
Fax: 215-590-4750
Time Spent: Patient Care, Teaching, Research-Clinical
Disciplines: Pediatric Rheumatology, Pediatrics
Member Type: Fellow Member

Kathleen E. Sullivan, MD, PhD
Div of Allergy/Immunology
Childrens Hosp of Philadelphia
34th St and Civic Center Blvd
Philadelphia, PA 19104
Ofc: 215-590-1697
Fax: 215-590-3044
Time Spent: Research-Basic Science, Research-Clinical, Patient Care
Disciplines: Pediatric Rheumatology, Pediatrics, Other
Member Type: Research Member

Pamela F. Weiss, MD
Rheumatology, Rm 236 CSSH
CHOP
3405 Civic Center Blvd
Philadelphia, PA 19104-4399
Ofc: 215-590-2547
Fax: 215-590-4750
Time Spent: Research-Clinical, Patient Care
Disciplines: Pediatric Rheumatology, Researcher-Clinical
Locations: Hospital
Member Type: Trainee Member

Tracey Wright, MD
Rheumatology
Childrens Hospital of PA
34th St & Civic Ctr Blvd
Philadelphia, PA 19104
Ofc: 215-590-2547
Fax: 215-590-4750
Time Spent: Patient Care
Disciplines: Pediatric Rheumatology
Member Type: Trainee Member
Source: http://www.rheumatology.org/directory/city.asp?hCountry=USA&city=Philadelphia&cbxPediatric=Yes&cbxPatientCare=Yes&state=PA.

Please keep me posted!

Mike

[Ihurt]

I will wait for her bloodwork, then go see Lahita. He's the only other one I trust.

BTW...His Mom just passed away, it's was in the ledger. Also, I got a card in the mail. He opened up a new practice, but for th elife of me, I can't find the card!

I will seek another opinion though, not because I don't trust Dr. L..O lovoe him to pieces, but IT IS ALWAYS better to get another opinion.

I know it bother's you....thanks for caring Mike. Im gonna tell Meggsie you thining of her! ;)

As always, thanks for the links!

[Caranmat]

Hi Ihurt

I'm so sorry to hear about your daughter.


Now I will move to get her eyes checked with Dr. Ross in Allentown., but will wait for the blood work to come back first.

I'm quite new to all this, so was wondering how psoriasis or psoriatic arthritis affects the eyes?

[Emsmom]

Elaine,
I'm sorry to hear this. But I am thrilled to hear that she's getting diagnosed in a timely fashion. That is often not the case.
I see that Mike gave you a list of ped rheums in the Philly area. I wanted to add to that by letting you know that the pediatric rheumatology team at Hershey Medical Center has a wonderful reputation. Dr Barbara Ostrov is one member of that team and she is wonderful! I've had several conversations with her thru the years and always find her very warm and very well informed.
My daughter is also 15. She's only dealt with psoriasis for the past couple of years but has lived with arthritis since she was quite young. If I can be of any help please let me know.
Liz

[Ihurt]

Hi Ihurt

I'm so sorry to hear about your daughter.



I'm quite new to all this, so was wondering how psoriasis or psoriatic arthritis affects the eyes?

HERE'S SOME INFO FOR YOU:



Ocular involvement: (7-20% of patients wit PA)
Anterior uveitis -
Most frequent to patients B27 with sacroiliitis.
Acute, non-granulomatous, fine KPs, mild cellular reaction
Occ.: hypopyon, post.synechiae, mild vitritis, secondary CME
Less frequently conjunctivitis, episcleritis, scleritis and retinal vasculitis may also occur.
Fever, fatigue and low grade vasculitis may occasionally appear.

Diagnosis:
The diagnosis of PA is essentially clinical and is based on the presence of typical skin and nail lesions and seronegative arthritis.
There are no specific lab tests; occasionally elevated circulating immune complexes and (+) HLA-B27 are found.
Radiographically psoriatic arthritis is a blend of bone destruction and proliferation. Manifestations may include erosive arthritis, terminal phalanges osteolysis, sacroiliitis and spondylitis.

Differential diagnosis:
Ant. uveitis associated with PA should be differentiated from uveitis associated with other seronegative spondyloarthropathies, such as ankylosing spondylitis and reactive arthritis. Differentiation is based on the specific clinical and X-ray findings.

Treatment:
Uveitis:
Acute uveitis: topical steroids, mydriatics
CME: Topical NSAIDs if not phakic, intraocular steroids, NSAIDs per os, steroids per os, periocular inj. Triamcinolone, diamox.
Recurrent disease: NSAIDs p.o., immunomodulatory therapy
Systemic disease: NSAIDs, immunomodulatory therapy, photochemotherapy

************************************************** ***

Symptoms
Depending on which part of the eye is inflammed in uveitis different combinations of these symptoms may be present.

Redness
Light sensitivity
Floaters
Blurry vision
Pain

These symptoms may come on suddenly, and you may not experience any pain. The symptoms described above may not necessarily mean that you have uveitis. However, if you experience one or more of these symptoms, contact your eye doctor for a complete exam.
************************************************** ********
Signs and Symptoms

The symptoms of uveitis depend on whether it is anterior, intermediate, posterior or diffuse.

Anterior

Light sensitivity

Blurred vision

Redness around the iris

Pain that may range from aching or soreness to intense discomfort

Small pupil

Tearing

Elevated intraocular pressure

Intermediate

Often affects both eyes

Floaters

Blurred vision

Posterior

Blurred vision

Pain (if the optic nerve is involved)

Diffuse

Combination of symptoms from anterior, intermediate, and posterior uveitis


Detection and Diagnosis

Uveitis is diagnosed with a thorough examination of the eye with a slit lamp microscope and ophthalmoscopy. Visual acuity and intraocular pressure are also evaluated. In some cases, blood work and others tests are required to rule out underlying systemic disease or infection.




Hope this helps.

Elaine

[Ihurt]

Elaine,
I'm sorry to hear this. But I am thrilled to hear that she's getting diagnosed in a timely fashion. That is often not the case.
I see that Mike gave you a list of ped rheums in the Philly area. I wanted to add to that by letting you know that the pediatric rheumatology team at Hershey Medical Center has a wonderful reputation. Dr Barbara Ostrov is one member of that team and she is wonderful! I've had several conversations with her thru the years and always find her very warm and very well informed.
My daughter is also 15. She's only dealt with psoriasis for the past couple of years but has lived with arthritis since she was quite young. If I can be of any help please let me know.
Liz

I didn't know that your daughter had it for years! Yes I will take you up on it when I need to talk I will PM you. If you've already been dealing with it for years your a better resource than I am! Im sorry your daughter is also affected :mad:

Thanks you for the info on that doctor. I will be in touch!!!!!!

Hugs
Elaine

[RichJ]

hi elaine,
i hope all works out for your daughter. i wish you and her the best

have a good night my friend

richard

[Emsmom]

You're welcome, Elaine.

Did you know that the Arthritis Foundation has programs for kids with arthritis? Pennsylvania has a fantastic camp, held in July every year. There's also a national conference every year. It is a family conference and is for kids with all types of arthritis and their families. In 2007 it was held in Hershey. In 2008 it will be in Costa Mesa, CA. There's a great group of teens every year. Some, like Emily, have been around for a while. But there are also lots of new kids every year. The kids all have a good time, including the siblings.

Liz