What now.. ? (7 year old -follow up questions)

[Rubix]

My 7year old daughter has had keratoconjunctivitis sicca for over 18 months with permanent scarring on one eye.

She has joint aches mostly in her back, knees and now her shoulder. She also has stomach upset and pain regularly.

It has just been confirmed by her dentist that she has a severely dry mouth. We’ve been given a list of instructions and products to help her with this and they have recorded on her file to have more regular checkups so they can watch for damage. The dentist said she thinks she has Sjogren’s.

BUT.. her blood test came back negative and the paediatrician has said she doesn’t have it because of that.

What do we do now? Is it worth getting a second opinion or do we just treat the symptoms and not worry about a diagnosis?

[Megansheart]

I think you do need to 'worry' about getting a firm diagnosis in the long term. However in the short term you may not get it if she is seronegative. In time hopefully your daughter will show positive bloods, if she has an autoimmune condition like Sjögrens.

I do think that any doctor who dismisses the diagnosis of Sjögren's Syndrome in the face of quite overwhelming symptoms, yet negative bloods, need to be directed to MANY patients who have in time developed SS autoantibodies.

I categorically believe that I had Sjögren's Syndrome right from the day I got sick on the 3rd August 2007 but I did not show autoantibodies (positive ANA's and Anti Ro's) until 2015. I had all the same symptoms all that time. Nothing was different. Based on these doctors assertions then I did not have Sjögren's Syndrome until the day I became positive. What ridiculous nonsense.

As your child is so young, I would not recommend a lip biopsy (another way to diagnose SS), however please continue to request ANA and ENA testing at least every year. It's heartbreaking that she has to deal with this so young.

For a bit of lighthearted reading, enter into a searchline, "When the blood work doesn't confirm the diagnosis, Sjodry and Parched" and this blog should come up.

[Rubix in reply to Megansheart]

Thank you for your reply and advice. I have made an appointment at our GP to update him with the information from the dentist and ask for a referral to look into this further.

My daughter has been so fatigued lately.. she has fallen asleep in class, in the car most afternoons and at a restaurant when we went out for dinner.. which is so unlike her. She normally is so full of energy and cartwheels everywhere! She hasn’t been wanting to go out and do anything and she said ‘I just want to sleep for the rest of my life’ 😞 So I think I need to push more for some answers.

Thank you again.

[honeybug]

Hi Rubix & daughter 🌿🦋

I’m so sorry that your daughter is so sick. Her dentist has knowledge of Sjogrens due to the dryness of the mucosal tissues. My dentist told me that my salivary ducts we’re closed. He suggested using Biotene oral gel at bedtime and the oral spray during the day to protect my teeth from cavities. I have been using them and they are sooo helpful.

As for the second opinion, it never hurts to get one. As your daughter is only seven she may be too young to show antibodies yet. 🦋💕

I was diagnosed with Sjogrens by my ENT when I had deviated septum surgery. He confirmed my condition by lip biopsy. For my severe dryness he prescribed Evoxac capsules twice daily. What a difference taking this Rx has made!!! 😊🦋😊🦋😊🦋

Please give your daughter my love and tell her I’m so sorry she has been so sick. I just prayed for her.

Best wishes for success in her diagnoses and treatments.

🌿🌸🌿🌸🌿🌸🌿🌸🌿🌸 💕🦋💕🦋💕🦋💕🦋💕🦋 🌸🌸🌸🌺🌺🌺🌸🌸🌸

😊🌸 🤗💕😘

[Rubix in reply to honeybug]

Thank you for your kind words and prayers.

The dentist put her on biotene toothpaste and mouth wash. I’ll look into the spray as well.. it could be good for when she’s at school. I’m lucky as I work at the same school she attends so her teacher sends her to me for eye drops of her eyes are bothering her in class. I could keep the spray there as well.. if it’s suitable for children.

Does the medication help with tiredness? My daughter has had no energy lately and has been falling asleep a lot through the day.

I’ve booked an appointment at her GP to follow up and request a referral.

Thank you again

[honeybug in reply to Rubix]

You’re welcome 😊

I’m glad she’s using the toothpaste and mouthwash. The gel works great while sleeping 😴.

As for the tiredness I’m sorry I can’t judge this due to having many overlapping conditions that all are plagued by severe fatigue.

Have her vitamin and thyroid levels been checked? If she is autoimmune afflicted then her thyroid could be under attack without knowledge of it as mine was. 🦋🌿🌺

I’m glad to hear that you have another GP appt soon.

I hope that you find answers soon and she gets relief ...working in her school is such a blessing for her. I’m so glad you will be able to help her as she needs it. 💗🦋

😊🌸 🤗💕😘

[Megansheart]

Hello again Rubix, although currently the American-European Consensus Criteria for Sjögren’s Syndrome requires that blood work show changes reflecting Sjögren's Syndrome (positive Anti SSA-Ro and Anti SSB-La) there are doctors researching seronegative patients and their severity.

This gives me hope that 'one day' there will be less rigidity in dismissing people, like your daughter from receiving a diagnosis and therefore treatment.

Please let us know how your daughter gets on at the GP's appointment. She is a brave girl - poor little darling!

[Rubix]

So for those following along..

My daughter saw a rheumatologist on Wednesday this week. Straight up he said he has never known anyone to have Sjogren’s and negative antibodies. I was feeling like he was just going to fob us off. He did an examination of her and he has diagnosed her with Joint Hypermobilitu Syndrome. He said that’s why she gets the joint aches, fatigue, gastrointestinal problems, headaches etc.

She starts a care plan next month with a support team (physio, podiatrist, occupational therapist).

He then examined her eyes and mouth. He was concerned that she has been on steroid eye drops for most of the last two years. He has ordered more blood tests to check a huge range of things including checking for connective tissue diseases and has asked us to go back to the ophthalmologist for her opinion on starting her on methotrexate.

I feel like we’re getting some answers and treatment options finally.