7 year old being tested for Sjogren’s

[Rubix]

Hi, I was wanting some advice.

My 7 year old daughter has just been to a paediatrician and he is testing her for Sjogren’s and rheumatoid arthritis. These were her symptoms:

*keratoconjunctivis sicca (she has been seeing an ophthalmologist and has been treated with steroids and lubricating drops for about 18 months)

*back pain and leg pain around her knees

*constant nausea and stomach pain

*he did an X-ray and she has quite bad constipation despite usually having diarrhea.

*iron deficiency

While we were at the dr she complained to me again of a dry throat and I told her we’d get something for it.. but I didn’t think to mention it as at that stage I didn’t know it could be a symptom of something.

She has been coughing a lot at night with a dry cough and yesterday she had a nose bleed which she never has had before.

She gets very thirsty at times and will almost be panicked if she doesn’t have water available nearby.

From a young child she used to rock back and forth on furniture and we noticed a connection between thrush and when she would do this.. we think it was her way to cope with the itchiness. She has started this again in the last few months.

She has been hospitalised for pneumonia and often gets respiratory infections.

She has a positive gene test for coeliac disease but the dr explained she doesn’t have it and may not get it.

As I have read more information. I feel like Sjogren’s would make sense and it’s like I can finally see how so many things we’ve been treating individually could actually be connected.

So.. my question is. At present the paediatrician has tested her blood for rh factor, ANA and some other antibodies that my gp said were testing for Sjogren’s . If these come back negative.. does that definitively rule out Sjogren’s?

We don’t see the paediatrician again for 4 weeks.. but my daughter is in pain every morning and night. Is there anything we can do in the meantime if it is Sjogren’s.

She’s using a heat pack on her back and knees. Taking paracetamol for the pain,

She’s on Prednisolone drops and celluvisc lubricating drops for her eyes but the steroids are being weaned down to see if she can manage without them.

Any advice is appreciated and thank you for reading my long post. 😊

[Hidden]

Oh dear Rubix I’m really sorry. It does sound as if something rheumatic or allergic is going on. I was similar at that age - although not hospitalised with it ever, apart from once with constipation. I didn’t have all the pain in my joints and muscles either. But I had to have loads of dental work all the time and had extremely dry, sore eyes, alopecia areata etc.

My family just thought I was very allergic and I only made the connection myself when a virus and menopause triggered RA about 7 years ago. And later I was rediagnosed at 53 with Sjögren’s. In between I managed to have a career and 3 children - now all young adults.

I can’t advise on how you can manage her pain in afraid - that’s for her doctors. But I can say that my blood work hasn’t pointed to Sjögren’s specifically but points clearly to autoimmunity. I had to have a lip biopsy for diagnosis of Sjögren’s.

I don’t think I’d recommend this procedure for anyone at her age though as it is possible that she will grow out of autoimmunity - or it will only be a relapsing remitting type. Best of luck and let us know the outcome of tests please.

[Megansheart]

As Twitchytoes has alluded to already, negative Sjögrens antibodies does not mean she does not have it. Many sufferers develop positive blood tests only years later or never.

Some Rheumatologists will state categorically that if a person is seronegative then they do not have Sjögren's Syndrome. I can attest that is NOT necessarily true. When I was so unwell in 2007/2008 and was negative for Sjögrens does that mean I did not have Sjögrens? No! It took eight years before my bloods became positive which revealed unequivocally what had already been suspected years before.

The poor little darling. I have only recently started using Celluvisc and gosh it makes the sight very blurry for about six or seven minutes. Does she need to use it at school? Also that dry-as-a-bone throat. Perhaps she is too young to use chewing gum but I have found there is a lemon and lime chewy (mainstream brand) available in most Australian supermarkets which really helps to produce saliva.

I hope that your daughter gets some answers very soon.

[Hidden]

I'm so sorry for your sweet daughter. It's hard enough to deal with these diseases as an adult, but as a child just seems unfair (not that these are ever fair). I think that it is hard to tell Sjogrens - I had it for about 20 years before I got RD, but I did get a reading on the blood test for Sjogrens... I wish you luck getting her straight. Blessings and Hugs

[Rubix]

Thank you for the replies. I appreciate you all taking the time to tell about your own experiences with being diagnosed.

Megansheart - at the moment she has been weaned down to having the steroids and celluvisc twice a day but she normally has both at school. At one stage she was on the celluvisc hourly!! It was months of setting hourly alarms and it really disrupted her life and made her feel quite frustrated 😔

At the last ophthalmologist appointment it was revealed that she has permant scarring on one of her eyes. Thankfully it hasn’t affected her vision permanently as it is currently only on the white of her eye. But when her eyes get very dry and irritated she does have reduced vision and photosensitivity where she can’t even handle a tiny amount of sunlight, camera flashes or room lighting.

Thank you for recommending chewing gum. She has tried gum when I’ve had it and she always asks to get some. I didn’t think of the connection between chewing and producing saliva. I’ll look for the lemon lime one. 😊

She had the blood tests done on Wednesday afternoon so I’ll ring today and see if the results are in.

Thank you again.

[Angelamarston1963 in reply to Rubix]

Your poor daughter how’s she coping with all these symptoms at such a young age ? Just to note that anything with lemon in will initially help dry mouth but continual use will start to have the opposite effect . Does she see her dentist regularly ? Mine had just prescribed a extra strength fluoride tooth paste as continuous dry mouth can lead to gum disease . Has she tried the topical heat /cold gels that are available over the counter ? These may help . Best wishes to you both

[Rubix]

So her blood tests came back negative. The paediatrician said this means she can’t have Sjogren’s.

Her eyes are getting red and irritated again and at a stage show yesterday she was very distressed when bright lights were shone into the audience. So I have started her back on lubricating drops and I guess it’s back to the Ophthalmologist for probably more steroids.

She is still in tears most mornings and nights with a sore back, sore knees and she sometimes complains of sore elbows. At these times she asks for Panadol and a heat pack.

She is due back at the dentist soon so I’ll speak to them. Her dad took her to the last appointment and said she’s going to need a lot of work in the coming years.. not because of cavities but something else. (But he couldn’t remember what they said it was). I’ll take her this time and find out.

Thank you for all your advice. I feel like there is still something there causing all these symptoms. But I’m not sure what the next step is now that the paediatrician ruled out RA and Sjogren’s. He did say she has bad keratoconjunctivis sicca but we knew that from the Ophthalmologist. She had a corneal ulcer and now has permanent scarring on one eye from it. It just never seems to go away.

Thanks again everyone. I’m using all of your advice to help her feel comfortable.

[SusieW2 in reply to Rubix]

Just remembered that my dry eye specialist advised taking fish oil and using a eye-lid wash (we get a Thera-tears brand). I've had noticeable improvement. And without drugs. Again, diet can make a big difference. I also limit regular dairy and mostly drink milk with reduced lactose and eat mostly only an occasional yoghurt cup.

[SusieW2]

Not a medical professional but you could address her nausea and stomach pains through a diet limiting foods that cause inflammation (which increases dryness) as well as a celiac diet and the addition of a probiotic to aid digestion. I also do better with some amount of raw food at the beginning of a meal. There are enzymes that are cooked out of many foods and which help with digestion. I started eating only plain fish, chicken and turkey with a few vegetable and apples. I felt much better. Then I added in on food at a time to see how I would react. You can use herbs, spices, butter & oils for seasoning. I get fiber through eating the skins with apples, potatoes, etc. Or consult a professional. I am gluten free which has reduced my bloating and gas as well as gerd. I even limit gluten-free carbs in the evening to reduce gerd. For my sinus dryness, I've found that essential oils help diminish stuffiness, aid in sinus drainage during the day and lessen post-nasal drip at night, thus less coughing at night. A reputable essential oil company will have a sinus blend. You can put it into a diffuser or wipe it just at the nostril, not inside, or follow directions. Saline nose sprays and something like petroleum jelly just inside nostrils helps me. Good luck. Really feel for a child with so much to deal with.

[Rubix in reply to SusieW2]

Thank you for all of your advice. That is definitely helpful!

The rheumatologist diagnosed her with Joint Hypermobimity Syndrome. He explained that it would be the reason for her stomach issues. She needs to see a physio, podiatrist and occupational therapist for it.

He tested her again and still negative for Sjogren’s. But he is referring us to a new ophthalmologist with the view to put her on methotrexate to hopefully get her off steroid drops (she’s coming up to two years of being on them most of the time.)

We have a diffuser so I’ll look into essential oils and her diet.

Thank you again 😊