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New Member

Date Joined Apr 2008
Total Posts : 4
   Posted 4/29/2008 6:02 AM (GMT -6)   
ok here is the deal my neice (randi) and her mother (Amanda) are still at hte hospital and they are being treated by the nephrologist because when Randi got to the hospital she only had about ten percent of her kidneys working. Here is my question do you feel that she should also sit down with the rhuematologist before she leaves the hospital. She is going to be released in just a few days. I told Amanda that I thought she should, I would have a ton of questions to ask him but for some reason her nephrologist feels that it isnt necessary and Amanda is just going along with it. I guess my biggest reason for the push to see the other doctor is because she is always complaing about her legs and arms hurting and we are three hours away from the hospital and he is the only ped. rhuemy in Michigan. So what do you all think?  confused

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 4/29/2008 6:36 AM (GMT -6)   
I am sorry, but why does your sister need a ped. rheumy? I would expect her daughter might need one but most people who are old enough to have had a child can see a regular rheumy so long as that person has a clue about whatever disease it looks like your sister has. If you are thinking of the consult for your niece then maybe you should point out that this would be something that could cover all the bases to make sure your niece will have the best care and treatment possible. It is also possible that the nephrologist knows something about this rheumy you do not. After all who better to know another doctor is not worth bothering with.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec

New Member

Date Joined Apr 2008
Total Posts : 4
   Posted 4/29/2008 7:07 AM (GMT -6)   
sorry let me explain better my sister does not need the rheumy my niece does. She is the one who has been diagnosed with lupus and she is six. At this point they are saying it is Lupus Nephritis and she doesnt need to see another doctor but before we even found out she had Lupus she was complaining of leg and arm pains.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/29/2008 9:12 AM (GMT -6)   
Hi Jessica,
Yeah, I think she should sit down with a rheumy for sure before she leaves.  Get as much info as possible. I've learned over the years that you have to "milk it for all it's worth"!  Definitely, she should talk to one. 
I hope this helps,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 4/29/2008 9:34 AM (GMT -6)   
Yes, I completely agree that a pediatric rheumy should see your neice before she leaves the hospital. She needs the most comprehensive care she can get. I hope your sister is able to arrange the rheumy to see your neice.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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New Member

Date Joined Apr 2008
Total Posts : 4
   Posted 4/29/2008 11:43 AM (GMT -6)   
Well they have chose not to see a ped. rhuemy and it makes me want to puke but on the other hand this is why they feel they shouldnt yet. When little Randi got to the hospital she had only ten percent of her kidneys working and so they focused on that they whole time. They did do a kidney biopsy and that is what tested positive for Lupus although all of her blood work came back negative. I am so confused as to why this would happen and what this means for her.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 4/29/2008 2:12 PM (GMT -6)   
   Little Randi will be in my thoughts and prayers as well as the rest of your family. I'm sure this is a terrible ordeal for you all! My heart goes out to you. My daughter is named Randi too... :-) . Please keep us updated and take care.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 4/29/2008 2:39 PM (GMT -6)   
Hi Jessica . . .

Isn't this a frustrating disease?

I would want to see the ped rheumie too if it were my child. BUT sometimes the treatment for the kidney's will also help the rheumatic issues. In other words, a lot of the meds used for organ involvement will also help relieve the aches and pains that come with this disease.

I hope things simmer down for your little niece. Please keep us posted.


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Psalms 139

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UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

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Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 4/29/2008 4:37 PM (GMT -6)   
If it were my child I would want a Rhuematologist in charge of her case and everyone else consulting but as she isn't my child I can only offer well wishes.

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 4/29/2008 5:41 PM (GMT -6)   
Hi all! I had the exact same scenario, only as an adult. All of my labs were negative but my kidney biopsy came back lupus. I rarely consult with a rheumatologist. Frankly, my nephrologist is much more knowledgeable and capable of treating my complex case. I have full confidence in her. Most nephrologist are very capable of treating lupus, they deal with it frequently. God bless you, Judy

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 4/30/2008 5:28 PM (GMT -6)   
Hi, I was diagnosed with lupus nephritis when I was 13 yrs old, and i never had a rheumy. I only saw a pediatric nephrologist and sometimes other specialty docs if needed. With lupus nephritis they dont know if the kidney acts up and the lupus flares or the lupus flares then the kidney gets attacked. With me it was just easier to see one doctor and he didnt mind that i didnt have a rheumy he never suggested it, and out of all the doctors i've had since i've been sick, he is still my favorite.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-tumor cerebri '07, AVN ankles and hips '07, depression '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, melatonin, celexa, pepcid, oxycontin for pain

Regular Member

Date Joined Oct 2006
Total Posts : 193
   Posted 5/1/2008 6:23 AM (GMT -6)   
I would imagine that the treatment for her kidneys will include meds for lupus that would help her pain issues. I do agree that it would be a good thing to see a rheumatologist, but at this point it is understandable that they are mainly focusing on the crisis at hand. One thing at a time may be the most they are able to handle right now - and the one thing at hand is saving her life.

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