Author Topic: questions about possible pediatric Sjogren's  (Read 141 times)

GWC

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questions about possible pediatric Sjogren's
« on: August 26, 2019, 10:47:28 AM »
I hope this is the correct place to post this.

I'm concerned about the possibility my daughter has Sjogren's, and I'm not quite sure where to take my concerns. My daughter has three chronic autoimmune diseases (well, kind of, two are autoimmune diseases of the liver/biliary tree, and the third is inflammatory bowel disease--I guess whether it is a true autoimmune disease or not is still in question), but none of them are commonly associated with Sjogren's. When she was first diagnosed with liver disease she has all sorts of blood tests for antibodies that were all negative (her diseases were confirmed with biopsy even after most diagnostic bloodwork came back normal). I already feel like her doctors think I'm a little paranoid about her health. Maybe I am, but I feel like I have reason to be. Anyway, she has lately started to complain to me that she can't cry. That is, when she is hurt and wailing, she can't make tears. She has also complained about vaginal dryness (not in those words because she's only 10, but I'm pretty sure that's what she's talking about). She has lots of joint pain (always brushed off as growing pains or pain associated with her liver diseases, and to be fair I've never seen swelling or redness associated with the pain). Running or walking any distance always causes her pain.  She has geographic tongue and it always looks awful, but I've never seen the fissuring I've read is associated with Sjogren's. I haven't noticed any swelling under her jaws or anything. Oh, the other thing is that her urine is always dark and often cloudy, but the (few) urine tests she's done have always returned normal, or with slightly elevated protein that is chalked up to dehydration. She also gets bladder spasms relatively often that make her feel like she has to pee again right after she's just gone. Those are awful.

The little I've read about pediatric Sjogren's seems to say that it presents differently than adult Sjogren's, but my daughter's complaints line up more with adult symptoms. I don't know if I should take her to our pediatrician (who has been wonderful, but I'm afraid of coming off as paranoid, especially when I know that there are times I need absolutely her to take what is going on seriously and I don't want to do anything that will make her inclined to blow us off, you know?), or to whom I should go to ask questions. Am I drawing too many "symptoms" together that don't belong together? Does she just need to drink more water? Am I missing obvious things other than Sjogren's that are simple? Help!

(I can appreciate why doctors don't want patients--or their parents--to self-diagnose. So, are these things enough reason for a doctor's visit in an of themselves? I don't even know any more.)

 


irish

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Re: questions about possible pediatric Sjogren's
« Reply #1 on: August 26, 2019, 11:23:20 AM »
You have your hands full and I am sorry that your daughter is having all these issues. The first thing I want to ask is if you have the ability to see an immunologist or to see a pediatrician who is active with autoimmune diseases. Universities are more apt to have these doc who specialize in the unusual medical issues even if they don't have a "degree" in these areas. They sort of develop an interest and see people who fall between the cracks.

I am concerned about your daughters urinary issues. Has she's been having in depth blood tests to keep track of her kidney function?With dark urine it is very possible that she is dehydrated, but keeping up with the kidneys and bladder are important. Have you tried pushing fluids with her? This, in itself, might decrease the bladder spasms. It may be time to get a second opinion on all of the things that are going on. She is at the age where puberty will enter into how her symptoms present themselves.

I know that it is a problem with kids and it is so devastating to us as adults. I have 5 autoimmune diseases. My hubby(deceased) had
Celiac and a bowel autoimmune issue, youngest son has Celiac and probably Sjogrens. This son also has a son who has Celiac who had symptoms at 3 years and on the diet at 4 years. Also, I have another son with bad Hashimotos and extremely high antibodies treated with Cellcept. So, I get what you are trying to accomplish with your daughter.

It is frustrating and worrisome and all I can suggest is that seeing other doctors in another setting may give you more help. It is expensive and exhausting but may save you a lot of grief in the long run. Sometimes we have to just get to other doctors and dig deeper into the health issues to find things out. Sometimes we get so much help that it is worth all the work that it takes to get it done. I wish you much success in your endeavor and please keep us updated on your daughter.

My feeling as a mother is that a person(child or adult) can have Sjogrens without presenting in any way that will make a doctor happy. Sometimes the symptoms just are what they are. Have ego rule out a lot of things as we go along too. Blessings. Irish