"My body hurts so I can't play" (age 3) update pg3

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amother

↑ OP ↓

Thu, Jul 04 2024, 10:08 pm

I was coming back to post this and then I remembered that I already had.

I can't believe it's been going on for so long.

He still complains that his body hurts him. He won't play in the park. It's been less noticeable over the whole winter, and in playgroup he went along with his friends, but he won't use his scooter and he's always in the stroller.

Tonight he told me that his stomach hurts. Not like a stomachache, like he said "my whole body hurts" and I asked where and he said inside his stomach.

I can do more bloodwork again... I don't know where to go for a second opinion, our pediatrician is excellent, I can always go to someone random but like why.

All the typical things look fine - I just did a well visit.

He also says that his eyes hurt but I have an appointment with an opthalmologist coming up in a week or two to check that out.

Sleep - he falls asleep fine, wakes up in night and comes into my husband's bed and then sleeps until morning. This doesn't seem crazy in and of itself, for his age.

Not related to recent MMR or other.

He's also been having terrible sugar cravings lately (as in, since this started) abnormal appetite for sugar and sweet things and carbs and refusing to eat real food. I was thinking to do a parasite cleanse which is crunchy even for me but I feel at a loss.

amother

Freesia

Thu, Jul 04 2024, 10:13 pm

Check for mycoplasma, celiac

Optione

Thu, Jul 04 2024, 10:13 pm

Perhaps test for celiac.

amother

Tulip ↓

Thu, Jul 04 2024, 10:18 pm

Hi also just want to mention that blood tests to detect lyme can actually be quite poor in their sensitivity. So would consider retesting.
I would also perhaps see a rheumatologist and infectious disease doctor.
Hatzlocha I really hope you get to the bottom of this!

amother

↑ Tulip

Thu, Jul 04 2024, 10:21 pm

Also just want to add that even if you think your pediatrician is good this has been going on for far too long. You must branch out and see some specialists who can guide you to do more specific testing.

amother

Carnation

Thu, Jul 04 2024, 10:22 pm

Hugs to you- it’s really hard to see your child suffering and not know how to help them.

amother

↑ OP ↓

Thu, Jul 04 2024, 10:25 pm

amother Tulip wrote:

I agree. I was honestly shocked to realize when I pulled this thread up.

You know how it is - busy with kids kah and life, and you just think maybe it's this or this benign thing, and then he's quiet for a few weeks, and even when he complains he seems fine, so you forget about it until the next complaint...

(okay maybe just me. but I'm going to tackle it now)

amother

Mintcream ↓

Thu, Jul 04 2024, 10:26 pm

Did they do thyroid testing?

Refua sheleima. Please advocate for him- but also remember we can’t heal our kids only hashem can send us the right shlichim, we have to just try try try.

MarthaS

Thu, Jul 04 2024, 10:27 pm

These symptoms are classics for Celiac disease.

flmommy

Thu, Jul 04 2024, 10:28 pm

Arthritis?

amother

Lightcyan

Thu, Jul 04 2024, 10:29 pm

Has he had any scans? Like a spine or brain scan?
CV that is it but should be ruled out.
I would also do bloodworm again. I know someone whose kid had leukemia but it didn't show on first set of labs... mom knew something was wrong but it was "too early" to tell.

amother

Arcticblue

Thu, Jul 04 2024, 10:29 pm

Did they do a celiac panel when they did blood work? When my 7 year old was 3 1/2 she was constantly complaining that her stomach hurt and she was very lethargic. It was ended up being celiac….

amother

Poinsettia

Thu, Jul 04 2024, 10:39 pm

I just found out the hard way that regular labs cant detect lyme disease you need a specialized lab to get results. Maybe it pays to try that.

amother

Tiffanyblue ↓

Thu, Jul 04 2024, 10:42 pm

amother Tulip wrote:

I agree. As moms we're all trying to do our best, but sometimes we really have to go above and beyond, and unfortunately second guess experts if our kid isn't being helped. Maybe start a new thread with your location and asking specifically for a pediatrician who has been helpful in detecting obscure things or who won't just let things stand where they are?

By the way, I also had Lyme disease as a kid and it was initially missed. I had to really push my parents to get me checked more and an infectious disease specialist sent my bloods across the country for extra sensitive testing, and that's how they found my Lyme.

Wishing your little boy a refuah sheleima.

shachachti

Thu, Jul 04 2024, 10:46 pm

Its so sad that he has this pain for so long but its remarkable that he expreses himself so well.

Something is definitely going on.
Don't take no for an answer. Kids don't make up pain. He'd rather run in the park.

ra_mom

Thu, Jul 04 2024, 10:46 pm

That sounds really worrisome.
I would make an appointment with an infectious disease doctor associated with your local hospital.
Refuah Shelaima!

amother

Honeysuckle

Thu, Jul 04 2024, 10:51 pm

Please get his blood sugar checked.

amother

Hibiscus ↓

Thu, Jul 04 2024, 10:51 pm

As others have said sounds like celiac but I really think after all this time you need to be more aggressive take him to specialists get to the bottom of it. This isnt normal. Find a doctor who will take you seriously. Call echo, chaim medical, refuah any of them let them help you. Refuah shelayma

amother

Bisque

Thu, Jul 04 2024, 11:50 pm

Gaucher disease.

amother

Caramel

Fri, Jul 05 2024, 12:42 am

Agree he needs to see a specialist.
Rheumatologist is one.
Neurologist is another.

If no one can find anything, I would turn to alternative medicine (and I am NOT crunchy at all). Something is not ok with your son and your instinct knows this.

(A former coworker of mine had babesiosis as a teenager -a lesser known tick born illness- was in and out of the hospital for months, high fevers, extreme weakness, lost a ton of weight, etc. Standard medicine could not figure out what was going on with her and her parents finally turned to alternative medicine and they figured it out. So if one thing doesn't work, go to the next option).

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