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Sarah has protein in her urine as well as blood-anxiety ridden Mom

rybrans07
0 Recommendations

Today I received the phone call none of us want to hear. Sarah's doctor called to tell me that her urine was positive for proteins and blood. He didn't say much else except that he was going to discuss this with all of her doctors and call me back tonight or tomorrow. I'm panicking and looking for anyone else who knows more about what this means for Sarah. I'm also wondering if anyone else's child has suffered with Failure to Thrive as a result of their FMF. Hoping to hear back, Kim

Explore topics in this discussion:

Anxiety Wells syndrome Autoimmune diseases Failure to thrive Fever Amyloidosis

9 replies

rybrans07

My daughter sees Dr. Behrens at CHOP. I love him, he's great!! I'm not sure if we're the other family, I thought he had other children with Periodic Fever syndromes as well, but I could be wrong. Sorry to hear about your son I really hope the rilonocept helps. Sarah has been having a pretty good month for a change. Feel free to contact me any time, my e-mail is rybrans07@yahoo.com Kim

LishandRod31

My son has Muckle Wells Syndrome and we are also patients at CHOP Rheumatology. We were told there was only one other patient in the CHOP clinic with MWS or a related syndrome, wondering if it was your daughter. Would like to chat. My son is only 2 and was just got the diagnosis within the last 6 weeks. We have started Arcalyst (rilonacept), a weekly injection. His blood was tested for amyloidosis and was negative. What a relief... how is your daughter doing these days?The worst part of all of this is that at anytime we could be in the same boat with someone else and not be expecting it. It is nice to have a network of support.

rybrans07

Well, this one came back as a failure too. Oh Well!

rybrans07

Sorry, I just noticed I left out one of the A's in her e-mail address, guess I was having a blonde moment (LOL). Hopefully it goes through this time.

rybrans07

Your daughter is very cute, I saw her carepage. I tried to e-mail the address you gave me regarding the conventions, but it was returned with a failure notice. Maybe she no longer participates in this website and has a different e-mail address. Oh well, I was really excited about the convention, but maybe they weren't having enough of a turnout or something. Anyway, thanks for all your help. Sarah's FMF episode is still in full force, she probably will not be going to school again tomorrow. How is Gabby feeling?

nikki228

check out her carepage if you like at www.carepages.com - her carepage name is:
GabrielleElizabethFiffick (all 1 word - no spaces, etc.)

rybrans07

Thank you so much for replying. After 20 hrs of crying thinking the amyloidosis had started the doctor finally called me back last night. Unbelievably, the nurse who reported the results misinterpreted them (can you believe it). Although I should have been upset, I was so relieved. It seems that the microscopic results showed trace protein and blood, her total numbers were fine-PHEWW!!! I really appreciate you taking the time to respond and I will definately contact the woman regarding the convention. Sarah is also in the middle of a flare, her fever was up to 104 last night. This morning it is only 101, but as usual she is home from school. Hope your daughter is feeling well soon too. Thank you again, Kim

nikki228

Our daughter is not FMF, but Behcet's Disease, and was in the PFS study at the NIH, as well as having other autoimmune diseases. She is not FTT, but I just wanted to offer a motherly shoulder for you...

I understand how upset you are...it's awful sometimes to have this built up anxiety - but still have to remain calm (for the sake of our kids) but at the same time you feel you are going to burst inside and nobody (not even your husband) can understand how much you hurt or even feels the exact same way you do! Okay - I'm done venting now...can you tell Gabby is having a flare this week! lol

Seriously though, about 6 months back Gabby had protein and blood in her urine for 2 months. At first they thought the worse...then a kidney stone, then a UTI - but as always her dr. treated her with what she felt - and although they never found out exactly what it was - the treatment helped - the protein and blood subsided and 3 mnths later it was completely cleared up...???

We will be saying prayers for your daughter (and you too)...God Bless.

kbarchus

My son is not FMF, but is periodic fever syndrome, unknown etiology. He is quite involved with multiple presentations, one being a problem with fat malabsorption. I do not think he is FTT, but is very small and does not put on fat. They are, recently, thinking about TPN feedings. ( My older son, age 11, just had his feeding button removed, very different condition). We go to the NIH for care and treatment, but his is not responding to much yet. This does not help you much, sorry, but thought I would let you know that we are struggling with growth, nutrition and PFS.

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