Dr. Hive: Why would 12 yo girls fingers be swelling?

[ksr5377]

UPDATE:  Her fingers are still swollen, but seem to be holding where they are and not getting worse.

Bloodwork was called in by the dermatologist, who was wonderful, but agreed that is was not a skin issue.  He thinks we need an endocrinologist, not a rheumatologist, but also admitted that he really had no idea.  He ordered every test he though might help out and literally said "We're going fishing for answers."  The pediatrician is on vacation this week.  😞

Bloodwork is back and the following are flagged as low:  Absolute Lymphocytes, Anion Gap, Aspartate Amino Transfer, Cholesterol/HDL ratio and Free Thyroxine.

My pediatrician as a kid always told me that it's good to be medically boring.  I feel like DD is not going to fit in that category. 😞

 

This started last Saturday and has been getting consistently worse each day.  Very slowly, but a noticeable increase in swelling each day.  It began very small in her fingernail bed.  We went to the pediatrician on Tuesday morning.  She decided to refer us to a dermatologist?  DD has not complained about anything else.  She doesn't have a fever, hasn't been sick, still has feeling in all her fingers, the skin does not have a rash, doesn't itch etc.  We see the dermatologist tomorrow but I don't expect to get any answers there since she has no other skin irritating symptoms.  Has anyone else had this happen?

I'm becoming more and more concerned as it keeps increasing  AND today it's finally to the point where she said that movement is somewhat uncomfortable due to the size of her fingers.

Edited January 25, 2021 by ksr5377

[fairfarmhand]

Did they do bloodwork or urinalyses? I'd make another appointment with general practitioner/ped. because something is causing her to retain water, which is different than a skin condition.

Does she have periods yet? I retain water in the week before I start.

Is she staying hydrated? Drinking too many soft drinks? Eating high sodium processed food?

[Lori D.]

Maybe developing an allergy to something? Has she handled something with that hand that could be reacting?
Did she get hit in the hand with a baseball, or otherwise strike/hit her hand? That can cause swelling.
Did she get bit/stung by a spider/bug? That could cause swelling, although normally you also see the bite/sting spot as well.

Otherwise, it seems like swelling in the fingers/hands are all symptoms of not-good things:
an internal infection
fluid retention due to lymphs not draining properly
developing an immune system issue, such as arthritis or lupus
and other nasty life-long ailments 😵
 

[Drama Llama]

Are her fingers swollen the whole length (like a sausage), or at the tip (like a club)?  

 

[JFSinIL]

Does the skin there feel at all warmer than the rest of the hand? I am thinking of celluitis. 

[ktgrok]

34 minutes ago, JFSinIL said:

Does the skin there feel at all warmer than the rest of the hand? I am thinking of celluitis. 

I am thinking the same. Could easily start with a small infection in her nail bed, from a torn cuticle - something so small you don't see/notice it. And then it spreads - happened in my toes. Any tenderness, redness, heat? If so, go to urgent care and get her on antibiotics asap. 

[PeterPan]

Does it improve if you soak in epsom salts or table salt?

I hope the dermatologist gives you a better referral. 

[ksr5377]

We have soaked them a few times and she said they felt more comfortable and the experience was relaxing, but I did not see a noticeable difference in the swelling.  It may have helped a little?

The pediatrician did no tests.  She thought we needed to see a rheumatologist and was going to call them to see if we should make an appointment or do blood work first.  Apparently the rheumatologist did NOT think they were the right doctor and said neither, it didn't sound like their specialty.  So then we were referred to a dermatologist to rule out any skin issues.  

Her fingers are slowly swelling like sausages, not just at the tip.  It is not just on the top of her fingers but all the way around.  She has had no injuries.  She is on her period this week.  The swelling began about 3 days before her period.  Wouldn't this be all over and not just fingers though?  Her toes are not the same way.   After the second day I made sure to lower the amount of salt in all of our meals.  Other than one snack of cheese and crackers this week, everything has been homemade and low-salt and the swelling is still increasing.  And her fingers are always ice cold.  That has not changed.  There is no noticeable temperature difference anywhere on her hands.

[ktgrok]

3 minutes ago, ksr5377 said:

We have soaked them a few times and she said they felt more comfortable and the experience was relaxing, but I did not see a noticeable difference in the swelling.  It may have helped a little?

The pediatrician did no tests.  She thought we needed to see a rheumatologist and was going to call them to see if we should make an appointment or do blood work first.  Apparently the rheumatologist did NOT think they were the right doctor and said neither, it didn't sound like their specialty.  So then we were referred to a dermatologist to rule out any skin issues.  

Her fingers are slowly swelling like sausages, not just at the tip.  It is not just on the top of her fingers but all the way around.  She has had no injuries.  She is on her period this week.  The swelling began about 3 days before her period.  Wouldn't this be all over and not just fingers though?  Her toes are not the same way.   After the second day I made sure to lower the amount of salt in all of our meals.  Other than one snack of cheese and crackers this week, everything has been homemade and low-salt and the swelling is still increasing.  And her fingers are always ice cold.  That has not changed.  There is no noticeable temperature difference anywhere on her hands.

are the fingers red or tender?

[ktgrok]

Sounds like they are thinking Psoriatic arthritis maybe? https://www.healthline.com/health/rheumatoid-arthritis/dactylitis#causes

 

[ksr5377]

There is no discoloration and they have not felt tender to the touch.   Just today she said she thinks they are kind of sore when she bends them.  After talking to her more about it I think it's that they feel tight and more difficult to move since they're more swollen today.  

[Drama Llama]

10 minutes ago, ksr5377 said:

We have soaked them a few times and she said they felt more comfortable and the experience was relaxing, but I did not see a noticeable difference in the swelling.  It may have helped a little?

The pediatrician did no tests.  She thought we needed to see a rheumatologist and was going to call them to see if we should make an appointment or do blood work first.  Apparently the rheumatologist did NOT think they were the right doctor and said neither, it didn't sound like their specialty.  So then we were referred to a dermatologist to rule out any skin issues.  

Her fingers are slowly swelling like sausages, not just at the tip.  It is not just on the top of her fingers but all the way around.  She has had no injuries.  She is on her period this week.  The swelling began about 3 days before her period.  Wouldn't this be all over and not just fingers though?  Her toes are not the same way.   After the second day I made sure to lower the amount of salt in all of our meals.  Other than one snack of cheese and crackers this week, everything has been homemade and low-salt and the swelling is still increasing.  And her fingers are always ice cold.  That has not changed.  There is no noticeable temperature difference anywhere on her hands.

I don't have any help to offer, other than to say that this is a good thing.  

I hope you get answers at the dermatologist.  

[TechWife]

Keep this in your sights: Henoch-Schonlein purpura (HSP)

Ask for a referral to a rheumatologist. Dermatologist makes no sense to me.

Take pictures every day. It may take some time to get into a rheumatologist and the pictures will help them figure out what is happening. Be sure to date & time them.

My son had this. His first symptom was joint swelling, first in fingers, then ankles, then all joints. The rash came some days later. He was much older than the typical patient with it as he was in college, so don't let them tell you she's out of the age range. Left unchecked and untreated it can cause kidney damage. It took my son about a year to fully recover and nephrology followed him for three years after that.

https://www.webmd.com/skin-problems-and-treatments/henoch-schonlein-purpura-causes-symptoms-treatment#1

 

Did the pediatrician do a urinalysis? That's how my son's kidney damage showed up - as excessive protein in urine.

Edited January 17, 2021 by TechWife

[kbutton]

Is it both hands? I have had one leg swell a little after sitting on the floor, and it happened several times in a row, but it stopped after changing chiropractors. I think something was pinched and caused tissue swelling.

An overuse injury? A strain type of injury could cause swelling, and sometimes the right manipulation can make it go away. 

[ksr5377]

It is in both hands.  The pediatrician kept asking about injuries and finally DD said "I think I would remember hurting all 8 fingers at the same time."

Her thumbs don't seem to be swelling.

The pediatrician ordered no tests.  I was OK with that at first as she was calling the rheumatologist, but now I'm getting upset, especially as it's getting worse.  

[ktgrok]

Did the link I shared about psoriatic arthritis/sausage fingers seem right? If so, I'd call the Rheumatologist office back - explain and use the technical term of dactylitis. That's an Rheum thing, as far as I understand. Derms treat psoriasis, but not psoriatic arthritis I don't think. 

[Ditto]

I am at a loss as to why rheumatology seemed to think this wasn't their area.  It certainly is where I would encourage you to start.   I hope that you are able to get solid answers soon.  It is very concerning.

[Drama Llama]

21 hours ago, ksr5377 said:

It is in both hands.  The pediatrician kept asking about injuries and finally DD said "I think I would remember hurting all 8 fingers at the same time."

Her thumbs don't seem to be swelling.

The pediatrician ordered no tests.  I was OK with that at first as she was calling the rheumatologist, but now I'm getting upset, especially as it's getting worse.  

I hope the dermatologist has either answers or a plan to find answers.  I am surprised the rheumatologist didn’t at least suggest bloodwork for the pediatrician to order.

[Tap]

Hopefully the derm will either have an idea what is going on, or can offer some clarification. If the derm thinks you should go to a rhum, then ask them to include the reason why in the notes. Having the proper clinical terms can help get a referral. In the beginning post, mentioning the nail issue, makes it seem possible that it was derm related. But if it is in both hands, I would skip that as a possible source. 

Don't hesitate to ask for a new referral to rhum if the derm doesn't have a suggestion. At the time the doctor tried to put in the referral, you only had a few days of history. Now you have over a week and a significant symptom that is getting worse with time. 

[BeachGal]

The swelling sounds like dactylitis which they are seeing occasionally in cases of Covid. Any chance she might have Covid?

You might want to monitor her kidney function because the damage can lead to later health problems. Earlier treatment is better.

ETA They are usually seeing redness along with swelling but even without redness, Covid could possibly be behind it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7744858/

4.10. Acral erythema and dactylitis

In one study, 20% of cases had dactylitis presenting as erythematous inflamed digits. Both fingers and toes were involved with females being slightly more affected (female to male ratio of 3:2). 28

Edited January 18, 2021 by BeachGal

[prairiewindmomma]

I think the magical words that I would start using are "bilateral, symmetrical swelling of the fingers on both hands".  That rings a different set of mental bells. 

My .02, having met a ton of rheumatologists over the years, is that most of them have major patient backlogs and try to punt off whatever they can to other specialists.  Then, if you do get in, you've got to convince them that whatever is going on is worth putting the patient on the heavy hitting drugs that they have, which are not without consequence.  It's not that they are all Asshats, but a good chunk of them are....kind of like neurologists.  They don't necessarily know how to share the toys in the sandbox and play nicely with others.

Keep at it until you get answers.  One of my first thoughts was also along the lines of BeachGal. I'd get a covid test and some basic comprehensive metabolic panels if you haven't gotten them yet, just to start with the easy rule-outs.

[alisoncooks]

Also, if your insurance is good/you can afford this: sometimes (not always) you can get seen by specialists quicker if you go the emergency room route. So if her fingers get worse or you're concerned about waiting, and if you have a good ER nearby (especially one connected to a good children's hospital), I'd try that. 

[Tanaqui]

Any good news?

[ksr5377]

Update in first post.

[prairiewindmomma]

Deal with the thyroid issue first.  Did they run the full thyroid panel, including the antibodies test?  Hashimoto's would be most likely at her age, especially if thyroid issues run along the female lines in your family.

Get that sorted, and after 6 weeks on meds, get her labs run again. It might take a bit to get her meds sorted out.  Once thyroid is stable, then assess the rest. Her metabolic panel issues could all be explained by thyroid being off, fwiw. But there may be more going on.

[prairiewindmomma]

Forgot to add---seriously, make sure they run the antibodies tests. Hashimoto's is correlated to fertility and other issues.  She needs to know if she has the autoimmune variety of thyroid issues or not.  If she has Hashimoto's and she becomes pregnant, she will need to have bloodwork done at the 5-6 week gestation mark in the future or she may have recurrent miscarriages.

[ktgrok]

Did they run ANA, etc?

[ksr5377]

I see nothing listed as antibodies on her test and I'm not sure what ANA is?  I'm so medically challenged.  I will ask next week at the pediatrician's appointment.  DD's thyroid showed as low last year, but when her tests were sent to 3 different endocrinologists they said she was fine.  The ped had run some bloodwork then because DD was complaining about mild depression.  If this is all related I will be so frustrated!

[ktgrok]

4 minutes ago, ksr5377 said:

I see nothing listed as antibodies on her test and I'm not sure what ANA is?  I'm so medically challenged.  I will ask next week at the pediatrician's appointment.  DD's thyroid showed as low last year, but when her tests were sent to 3 different endocrinologists they said she was fine.  The ped had run some bloodwork then because DD was complaining about mild depression.  If this is all related I will be so frustrated!

ANA is a common test run looking for autoimmune issues. Also Rheumatoid factor, and others. 

[ksr5377]

I'll ask about that next week as well.  There are tests that still show as pending: Lupus Anticoagulant APTT, DRVTT Screen Ratio and Interpretation.

Thank you everyone for all the input!

[ktgrok]

Just now, ksr5377 said:

I'll ask about that next week as well.  There are tests that still show as pending: Lupus Anticoagulant APTT, DRVTT Screen Ratio and Interpretation.

Thank you everyone for all the input!

Ok, if she ran that, she ran the normal autoimmune stuff. Sounds like she did the right stuff. 

[Tanaqui]

Sound like your dermatologist is at least making a solid effort even if, of course, this isn't his specialty. Do you strictly *need* a referral from your pediatrician? Or could you just make an appointment with an endocrinologist on your own?

[ksr5377]

1 hour ago, Tanaqui said:

Sound like your dermatologist is at least making a solid effort even if, of course, this isn't his specialty. Do you strictly *need* a referral from your pediatrician? Or could you just make an appointment with an endocrinologist on your own?

I can just make an appointment.  I just wasn't sure which direction to go.  And yes, so far I have found the dermatologist to be more helpful out of everyone.  Also, we live in the middle of nowhere so none of these specialists are local.  I'm also trying to find out which children's hospital system would be the best to get in to.  

[Tanaqui]

Honestly, I like your dermatologist, so go back and ask if he has any recommendations on an endocrinologist and on which hospital system. Even if he doesn't, he may be able to point you to the people who do.

And while I think it's probably a good sign that her fingers have stopped getting worse, nothing about this sounds normal to me. I mean, it could be okay, I'm not a doctor - but I don't think that a weird symptom that nobody has any ideas about is something you should delay. The best hospital, the best doctor? Sometimes, the best is the one you can see the soonest.

[prairiewindmomma]

2 hours ago, ksr5377 said:

I'll ask about that next week as well.  There are tests that still show as pending: Lupus Anticoagulant APTT, DRVTT Screen Ratio and Interpretation.

Thank you everyone for all the input!

Those specific panels are lupus panels.

You're looking for TPO(thyroid peroxidase), thyrotropin receptor antibody TRAb (in the case of hyperthyroidism and graves' disease) and possibly TAA and TSI for the thyroid antibody stuff....

ETA: I agree endocrinology is the next step. Endocrinology is who sent me over to rheumatology eventually---but endocrinology is the first set of things to address because it affects so many systems.

Edited January 25, 2021 by prairiewindmomma

[Jean in Newcastle]

31 minutes ago, ksr5377 said:

I can just make an appointment.  I just wasn't sure which direction to go.  And yes, so far I have found the dermatologist to be more helpful out of everyone.  Also, we live in the middle of nowhere so none of these specialists are local.  I'm also trying to find out which children's hospital system would be the best to get in to.  

Even if your insurance doesn't require a referral, my experience with our local children's hospital is that they do require a referral. 

[TravelingChris]

On 1/17/2021 at 4:58 PM, ktgrok said:

Did the link I shared about psoriatic arthritis/sausage fingers seem right? If so, I'd call the Rheumatologist office back - explain and use the technical term of dactylitis. That's an Rheum thing, as far as I understand. Derms treat psoriasis, but not psoriatic arthritis I don't think. 

Yes, absolutely.    And look up the doctor too.  And don't let anyone tell you that children can't get rheumatological diseases.  I know mine started definitely by around 15.  One of my dd's had her first symptoms at age 5.  Lots of people I know through Facebook groups concerning my rheumatological diseases also say their symptoms started way before adulthood.

[TravelingChris]

Having read about the test results- I can tell you that thyroid issues were one of the possible things mentioned when I had dual swollen lower legs and feet in October, Nov.   Having issues with your thyroid can mean that fluids can;t move right.  I would also be monitoring her legs and feet.  Generally, you can swell quite a bit before it really becomes noticeable.

[Ditto]

I'm glad the dermatologist was so receptive in helping you.   I hope you are able to find a good endocrinologist who will give you a definitive diagnosis and treatment plan.