u/hopejoy108

Looking for hope and guidance

My little boy just turned 5, and I am writing this with a very heavy heart because I am honestly scared and overwhelmed.
Over the last 2 years, my son had some tendon findings and swelling in a couple of fingers and around the ankle/heel area, which eventually led us to imaging. Ultrasound and MRI both showed tenosynovitis. We are waiting to see pediatric rheumatology, but the appointment is still far away.

What has scared me recently is that his ANA turned positive this year (it was negative until last September), and he also had positive anti-RNP antibodies. His inflammatory markers otherwise were mostly okay.
He has also had consistently elevated eosinophils/basophils for almost 3 years, usually ranging around 1000–1500, once or twice closer to 1700, but they usually come back down again. His doctors had mostly connected this to severe eczema/atopy. He has been on Dupixent for eczema, and honestly Dupixent gave him his life back from the skin perspective. His eczema is very well controlled now.

But now with the ANA/RNP and tendon findings, I am terrified that we are walking toward some connective tissue disease or autoimmune diagnosis. Today the orthopedic doctor who looked at the MRI sounded much more concerned than the pediatrician and even more concerned than the rheumatologist who briefly reviewed things online and told us to wait for the in-person evaluation. I am attaching his MRI here, the orthopedic told that there is synovitis in two fingers which is not expected in a kid his age.

I think what is breaking me emotionally is that he is only 5. He has already gone through so much with eczema, allergies, eye dryness/redness from Dupixent, bloodwork, imaging, appointments… and now I feel like I am watching every little thing in fear.

I don’t even know exactly what I’m asking for. Maybe just hope, perspective, or hearing from parents whose children had positive ANA/RNP or tenosynovitis early on. Did things stabilize? Did anyone’s child go on to live a full normal life even with an autoimmune diagnosis? How hard are the medications? Is life hanging in by a thread for our family? Do I need to keep looking for everything to figure out and rush if I see something wrong. I can’t see the internal organs but then what can happen? It is an unknown scary situation for me.

I keep reading things about connective tissue disease and internal organs and it is terrifying me. I know nobody can diagnose my child online. I think I just need to hear from people who have been through uncertainty like this.

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u/hopejoy108 — 20 hours ago

Looking for some hope and guidance

Looking for some hope and guidance

My baby just turned 5, and I am writing this with a very heavy heart because I am honestly scared and overwhelmed.
Over the last 2 years, my son had some tendon findings and swelling in a couple of fingers and around the ankle/heel area, which eventually led us to imaging. Ultrasound and MRI both showed tenosynovitis. We are waiting to see pediatric rheumatology, but the appointment is still far away.

What has scared me recently is that his ANA turned positive this year (it was negative until last September), and he also had positive anti-RNP antibodies. His inflammatory markers otherwise were mostly okay.
He has also had consistently elevated eosinophils/basophils for almost 3 years, usually ranging around 1000–1500, once or twice closer to 1700, but they usually come back down again. His doctors had mostly connected this to severe eczema/atopy. He has been on Dupixent for eczema, and honestly Dupixent gave him his life back from the skin perspective. His eczema is very well controlled now.

But now with the ANA/RNP and tendon findings, I am terrified that we are walking toward some connective tissue disease or autoimmune diagnosis. Today the orthopedic doctor who looked at the MRI sounded much more concerned than the pediatrician and even more concerned than the rheumatologist who briefly reviewed things online and told us to wait for the in-person evaluation. I am attaching his MRI of the fingers and ultrasound of the ankle here, the orthopedic told that there is synovitis in two fingers which is not expected in a kid his age unless there was an injury.

I think what is breaking me emotionally is that he is only 5. He has already gone through so much with eczema, allergies, eye dryness/redness from Dupixent, bloodwork, imaging, appointments… and now I feel like I am watching every little thing in fear.

I don’t even know exactly what I’m asking for. Maybe just hope, perspective, or hearing from parents whose children had positive ANA/RNP or tenosynovitis early on. Did things stabilize? Did anyone’s child go on to live a full normal life even with an autoimmune diagnosis? How hard are the medications? Is life hanging in by a thread for our family? Do I need to keep looking for everything to figure out and rush if I see something wrong. I can’t see the internal organs but then what can happen? It is an unknown scary situation for me.

I keep reading things about connective tissue disease and internal organs and it is terrifying me. I know nobody can diagnose my child online. I think I just need to hear from people who have been through uncertainty like this.

u/hopejoy108 — 21 hours ago

Dupixent - joint pain

Hi everyone, I’m looking for some guidance from people who developed joint or tendon-related symptoms while being on Dupixent long term.
Specifically, I’m hoping to hear from people who had been on Dupixent for more than a year before symptoms started. Did anyone begin developing joint pain, stiffness, tendon pain, swelling, gait changes, or tenosynovitis months or even a year+ after starting Dupixent?
If yes:
What symptoms did you develop?
How long after starting Dupixent did they appear?
Did your doctors feel Dupixent triggered or unmasked inflammation?
Did stopping Dupixent help?
If you stopped it, how long did it take for symptoms to improve?
Trying to understand others’ experiences, especially delayed-onset joint/tendon symptoms after long-term use. Thank you so much.

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u/hopejoy108 — 3 days ago
▲ 2 r/mctd

RNP antibodies trending up in 4 weeks?

Hi everyone. I am honestly just looking for some support and to hear from others who have been through something similar.
My child is very young (5) and has been on Dupixent for atopic dermatitis for about 18 months. At the 12 month mark his ANA was completely negative. Sometime after that it turned positive.
His current picture:
• Persistent swelling and stiffness in his finger for over a year
• Very mild tenosynovitis in two fingers on MRI — no other signs of inflammation or joint damage found
• Ankle tenosynovitis last year
• Skin history with photosensitive features
• Elevated eosinophils and basophils persistently over several years
His labs:
• ANA positive in April, was negative until August 2025
• Anti-RNP: 1.2 in April 2026 → 1.6 in May 2026 (normal 0.0–0.9)
• C3, C4, CH50, ferritin all normal
• Inflammatory markers normal
What worries me most:
The anti-RNP went from 1.2 to 1.6 in just about 4–5 weeks. Has anyone ever seen their levels trend upward this quickly? Is this considered a significant jump or normal fluctuation?
We have a rheumatology appointment coming up and I am also wondering whether Dupixent could be driving this through the Th2 to Th1 immune shift since his autoantibodies only appeared after starting it.
I am a worried parent just trying to understand what we are dealing with and find others who have navigated this. Any experiences or insights are welcome. Thank you. 🙏

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u/hopejoy108 — 8 days ago

Positive ANA and rising Anti-RNP in my young child — has anyone seen levels change in 4 weeks?

Hi everyone. I am honestly just looking for some support and to hear from others who have been through something similar.
My child is very young and has been on Dupixent for atopic dermatitis for about 18 months. At the 12 month mark his ANA was completely negative. Sometime after that it turned positive.
His current picture:
• Persistent swelling and stiffness in his finger for over a year
• Very mild tenosynovitis in two fingers on MRI — no other signs of inflammation or joint damage found
• Ankle tenosynovitis last year
• Skin history with photosensitive features
• Elevated eosinophils and basophils persistently over several years
His labs:
• ANA positive in April, was negative until August 2025
• Anti-RNP: 1.2 in April 2026 → 1.6 in May 2026 (normal 0.0–0.9)
• C3, C4, CH50, ferritin all normal
• Inflammatory markers normal
What worries me most:
The anti-RNP went from 1.2 to 1.6 in just about 4–5 weeks. Has anyone ever seen their levels trend upward this quickly? Is this considered a significant jump or normal fluctuation?
We have a rheumatology appointment coming up and I am also wondering whether Dupixent could be driving this through the Th2 to Th1 immune shift since his autoantibodies only appeared after starting it.
I am a worried parent just trying to understand what we are dealing with and find others who have navigated this. Any experiences or insights are welcome. Thank you. 🙏

reddit.com
u/hopejoy108 — 8 days ago

Smart 5-year-old but struggles with engagement and attunement — did this improve for your child?

My son is 5, very verbal, bright, curious, and clearly intelligent in many ways. With support and follow-through, he can do surprisingly hard things academically and understands concepts that genuinely impress me. His language is good for his age too.

But the part I struggle to understand is engagement.

He has never gone to school yet and has mostly been in ABA for almost 22 months. He can be conversational when he wants something or is interested in the topic. But socially/environmentally, he often seems “not tuned in.” For example, if someone says hi, he’ll say hi back. If they ask “how are you,” he’ll answer “good.” But after that, it’s almost like he stops registering that the person is still talking to him unless I redirect him and say, “They asked you your name,” etc.

A lot of times he seems absorbed in his own thoughts. He may give very surface-level answers, seem lost, or need repeated redirection just to attend to the interaction first. It’s not that he lacks language — it’s more like the engagement/attunement piece is missing or inconsistent.

What worries me is whether this improves naturally with age and experience, or whether it needs very intentional teaching. Has anyone had a child like this at 5 who later became more socially aware, engaged, responsive, and naturally conversational?

What actually helped increase engagement with people and the environment? Did school help? Peer exposure? Maturity? Specific therapies or strategies?

I would really appreciate positive experiences or practical advice because this feels like the one thing that could really affect him later if it doesn’t improve.

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u/hopejoy108 — 9 days ago

Finger Swelling

Has anyone here had swelling/fullness in multiple fingers where imaging eventually showed very mild tenosynovitis or tendon-related inflammation, but not clear joint inflammation/synovitis?
Especially in a child or early on, did doctors initially think about inflammatory arthritis/JIA, but later decide it was more mechanical, overuse, hypermobility-related, or something else?
I’m curious:
How long did the tendon findings stay visible?
Did the swelling persist even without a firm diagnosis?
Did it ever progress into a clearer inflammatory condition later?
Or did it remain mild/stable and never really turn into arthritis?
Also, if it was tendon-related for you, what helped in the end — rest, PT, NSAIDs, braces/splints, time, rheumatology follow-up, etc.?
Would really appreciate hearing others.

reddit.com
u/hopejoy108 — 9 days ago

Finger fullness

Has anyone here had swelling/fullness in multiple fingers where imaging eventually showed very mild tenosynovitis or tendon-related inflammation, but not clear joint inflammation/synovitis?
Especially in a child or early on, did doctors initially think about inflammatory arthritis/JIA, but later decide it was more mechanical, overuse, hypermobility-related, or something else?
I’m curious:
How long did the tendon findings stay visible?
Did the swelling persist even without a firm diagnosis?
Did it ever progress into a clearer inflammatory condition later?
Or did it remain mild/stable and never really turn into arthritis?
Also, if it was tendon-related for you, what helped in the end — rest, PT, NSAIDs, braces/splints, time, rheumatology follow-up, etc.?
Would really appreciate hearing others.

reddit.com
u/hopejoy108 — 9 days ago

Eczema and immune dysregulation treatment in Ayurveda

From what i have understood in two years is that eczema is not the problem of the skin but the immune system dysregulation. You can put anything on the skin but it keeps coming back.
My son is only 5 and he has been suffering from eczema from last three years. He was prescribed a biologic Dupixent that keeps the eczema in check by suppressing that immune activity.
I want to transition to ayurveda and am here for help and suggestions to know what can help the immunity and the gut function.
Thank you

reddit.com
u/hopejoy108 — 12 days ago

Hi everyone, I’m trying to understand whether my son’s old skin issues could possibly be related to his current tendon/finger problems, or whether these are likely separate things.
Between July 2023 and around October/November 2023 (he was around 2 years old then), he had 2–3 episodes of a widespread rash. It started as pink raised bumps/papules, spread over large parts of the trunk/body, and some lesions later merged into larger dry/scaly patches. During the fading stage, some areas looked “drop-like.” Interestingly, the trunk rash itself was not very itchy, although he did have an itchy/flaky scalp around the same time.
Those episodes resolved with steroid creams and eventually completely disappeared.
Later on, he developed a different kind of skin issue that looked much more like eczema — very itchy patches mainly on the arms/fingers/hands. After starting Dupixent, that eczema-type rash resolved really well and has stayed controlled.
Now the current issue is that he has had:
ankle tenosynovitis previously,

and now persistent swelling/fullness and functional limitation in one finger.

Recent ultrasound showed possible very subtle flexor tendon sheath/tenosynovial thickening but no Doppler hyperemia, no fluid, and otherwise normal tendons/joints. MRI is scheduled soon. Bloodwork in 2024 after the rash episodes was reassuring/normal.
I’m trying to understand:
Has anyone had a child with temporary guttate-psoriasis-like rashes that completely resolved and never returned?

Can old inflammatory skin episodes be unrelated to later tendon issues?

Has anyone had mild tendon sheath swelling/finger fullness turn out to be mechanical/hypermobility-related instead of autoimmune?

If MRI later showed no active inflammation, what explanation did doctors give for visible swelling/fullness?

Not looking for a diagnosis — just trying to understand how these kinds of stories sometimes evolve.

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u/hopejoy108 — 15 days ago

Hi everyone, trying to understand heel pain as an early sign of psoriatic arthritis.
For those who had heel pain before or around their PsA diagnosis:
• How did it start? Gradual or sudden? One heel or both?
• Did it worsen after activity or after rest? Like was it worse after a long walk, or worse getting up after sitting/sleeping?
• Morning stiffness — how long did it take to ease up after getting out of bed?
• Any swelling visible at the heel?
• How long before PsA was diagnosed? Were you told it was plantar fasciitis first?
Would really help to hear real experiences — especially if your heel pain was dismissed as mechanical for a long time before the real diagnosis came through.
Thank you

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u/hopejoy108 — 15 days ago

My 5 year old has had eosinophils and basophils 3-5x above normal for 3 years — now showing positive ANA and elevated Anti-RNP. Looking for insights from anyone with medical knowledge.

My son is 5 years old and has had persistently elevated eosinophils and basophils for the past 3 years. I am trying to understand what could be driving this and would love input from anyone with medical background or similar experience.

The Numbers:

• Eosinophils: Normal range 0–250. His have ranged between 800–1700 over 3 years

• Basophils: Normal range 0–40. His have consistently been between 90-130

His History:

• Diagnosed with atopic dermatitis around age 2

• Started Dupixent which controlled his skin symptoms well

• Elevated eosinophils and basophils were present before and after starting Dupixent

• Bloodwork has never normalized despite skin being well controlled

Recent Labs:

• ANA positive

• Anti-RNP elevated at 1.2

• Anti-dsDNA, Anti-Smith, Anti-SSA/SSB, Anti-Scl-70 all normal

• CRP, ESR, CK, organ function all normal

My Questions:

  1. Could the eosinophilia and basophilia have been early signs of an autoimmune condition developing?

  2. Does the combination of elevated eosinophils, basophils, positive ANA and anti-RNP point toward MCTD, UCTD or something else?

  3. Could Dupixent be masking an underlying systemic condition while controlling the skin?

  4. Should we be investigating Hypereosinophilic Syndrome or MCAS alongside the autoimmune workup?

  5. What additional tests would you recommend at this stage?

He has no obvious organ involvement currently and his skin is well managed on Dupixent. I am concerned that something systemic has been developing quietly for 3 years and is now starting to show in labs.

Any insights, similar experiences or guidance would be greatly appreciated. Thank you.

reddit.com
u/hopejoy108 — 21 days ago

Hi everyone, I’m looking for some guidance.

My son is 5 years old and was found to have about a 0.5 cm leg length discrepancy (left leg shorter). He’s currently using a custom orthotic with a lift and support for over-rotation, and it’s been about a month.

However, his walking still looks off, and a new physical therapist mentioned that his gait pattern itself is different. After walking for a few minutes, he sometimes complains of pain in his left heel or arch.

I’m trying to understand:

Is this something that just takes more time to correct with orthotics?

Or could there be something else going on (gait mechanics, muscle imbalance, etc.)?

Would really appreciate if anyone has seen something similar or can suggest what type of evaluation or intervention helped (e.g., gait analysis, specific therapy approaches, etc.).

Attaching a video if you could please take a look at it? Thanks

u/hopejoy108 — 25 days ago