Y'all are my favorite health consultants, so I would love your advice...pretty please :)

[Ann.without.an.e]

First of all, I haven't been here in so so long and for that I'm sorry. Life has just been pretty busy.

With several of my kids' health issues in the past, we could go from doctor to doctor but y'all would be the ones to steer me in the right direction and usually find the problem which would then prod me to ask for the right tests or ask the right questions and get our issues solved. So I would love to lean into your collective knowledge and intuition with my youngest DS. 

He recently turned 15 (how did that even happen?). A few years ago he was having some issues that I thought might be Hashimoto's (my girls were diagnosed at 13 and 15), but his thyroid and antibodies were fine. We moved on but his exhaustion kept getting worse and worse. Fatigue, a harder time thinking through things, muscle weakness, etc. He was also losing vision in one eye and losing balance. I finally decided that the pediatrician was of no help and I scheduled him with my DR who pulled a vitamin panel and it turned out he was extremely low on vitamin B. He is dairy free and beef free but eats eggs and other meats. It really didn't make sense for someone who eats a very healthy diet to tank in B to the point that we were seeing damage, but we just accepted it and moved on. High doses of B solved his issues but it took about 6 months of supplementation for him to feel fully recovered. 

Fast forward, About 6 months ago, the tiredness started again. Deep exhaustion and fatigue. We literally had to ask for exemptions for his last 3-4 weeks of online classes because his vision in the bad eye (other eye is fine) took a huge dive again. New glasses helped with the reading issues but he is still struggling with exhaustion and he has been saying for months that he "feels like his brain is deteriorating". He is very very bright but it is like he is having a hard time putting together thoughts at times and he is battling brain fog. This is not his normal at all. He's a very smart, logical, academically gifted kiddo so this is very discouraging and frustrating for him, as you can imagine.

Here are his other symptoms...

He drinks a crazy amount of water. If not then he feels like he is drying out from the inside out. He feels parched. He finishes a 40 ounce bottle of water about every 60-90 minutes. He also uses the bathroom a lot, understandably. I have asked him to try to cut back but he says it feels like he is dehydrated if he does. 

When he was younger, he was extremely coordinated and athletic. He still struggles some with coordination. I've chalked the coordination up to the loss of vision in one eye. Even with glasses, this can cause things to feel wonky, or so I have heard. 

He is holding some weight right in his middle. He is embarrassed about this and hates it. ALL of his weight is in his middle too. He is very toned and thin in the arms and legs and face. His middle is far too large in proportion for the rest of his body, especially for a kid who eats very very healthy. He is GF, DF, doesn't eat much sugar, doesn't drink soda, we don't eat fast food, etc. He doesn't eat huge portions. You can tell the weight gain bothers him. 

He will sometimes go through periods where his sinuses are super inflamed. Not the typical allergy symptoms like watery eyes or itchy eyes or runny nose. It is just like they are swollen and stuffed and he can't breathe but it comes and goes. 

The eye doctor always comments on how he needs eye drops since his eyes are dry. 

It is almost impossible to pull labs on him. They always have to go find a supervisor or someone with more experience and it is always a big, dramatic ordeal where he gets poked and prodded a bazillion times. To clarify, he isn't dramatic about it but the person drawing his blood usually gets pretty frustrated. They always resort to using his hands. They always say he must not drink any water and must be dehydrated and tell him to "please make sure to drinks 16 ounces of water an hour before you have blood drawn next time". Hydration is not the issue. 

We saw a pediatrician in May and he said it was teen fatigue. He talked to him about more sleep. The kids sleeps 10-12 hours a night and is still so tired most days. He talked to him about eating healthier. He already eats so so healthy! I hate feeling like I'm speaking but not being listened to here. 

I pulled the card that I hate to pull and I made an appt for him with my Dr and she will see him at the end of the month. She doesn't usually see new patients or under 18 but she made this exception for me last time and she did find the issue unlike the ped. 

Here is what the pediatrician pulled for labs...

CBC, CMP, ESR, A1C, Urine test, B and D, thyroid panel and thyroid antibodies

Urine test was clean, no issues there

 

His lymphocytes were low and his neutrophils were high but the ped didn't say anything about it. I guess he wasn't concerned but everything I read says that one being low and the other high is not good.   

His ESR is slightly elevated. 

His ALT is slightly elevated but not concerning. 

Platelets are slightly elevated. 

His Vitamin D was good

Vitamin B12 was really high. 2,261 (reference range being normal over 180)

Thyroid and antibodies are good

A1C was normal 

So here are my rambling thoughts if you're still following me lol

Is the Vitamin B too high? Is this our issue now and he should stop taking it? Or is he not uptaking it on a cellular level somehow? I don't know how it works really and am not sure. 

I have celiac and Hashimoto's, both of my girls have Hashimoto's and younger dd has something else going on that causes her to have to take a ridiculous amount of iron or she is anemic, Older DS has crohns and a rare autoimmune liver condition. We really pulled the short straw on autoimmunity.

 I have questioned Sjogrens for awhile with him. But that is almost always secondary to another autoimmune disease. He's my first kid to make it to 15 without another diagnosis but he doesn't have one so far. 

I want to talk to my doctor and have some ideas for anything specific I want to check but I'm not even sure. Should we be screening for other autoimmune issues and possible Sjrogrens? Should I be worried any anything neurological?

 

I'm sorry for the length. I would really love any ideas on what I should be requesting tests for? I know she will do it if I ask. 

Thank you all so much ❤️ 

Edited to Add A1C

Edited July 11 by Ann.without.an.e

[freesia]

You haven’t mentioned diabetes. Has he had an A1C done? That would fit with the exhaustion and thirst. I would ask for a referral to an endocrinologist if possible. I’m so sorry. That sounds so frustrating and sad for him. 

[Ann.without.an.e]

Just now, freesia said:

You haven’t mentioned diabetes. Has he had an A1C done? That would fit with the exhaustion and thirst. I would ask for a referral to an endocrinologist if possible. I’m so sorry. That sounds so frustrating and sad for him. 

So sorry, I forgot to note that. His A1C was normal. It was high end of normal, but still in normal range. 

Thanks for asking about that. 

[prairiewindmomma]

On the vision front, is it just a refractive change in his eye? Pressures are normal, vessels and structures look fine? Is his eye teaming ok? I ask because ds had a refractive change in one eye and his brain was actually shutting off images from that eye.  He was functioning one-eyed, but didn't realize it, because his brain processed the change so efficiently. Side effects were exhaustion (from the brain working so hard) and balance and coordination issues.  Did solving the refractive change lessen any of the balance/coordination issues?

Is your ds moving enough to maintain core body strength and stamina? It's super hard when you're exhausted, but it becomes a compounding problem.

I don't think my thoughts cover all of the issues, but that's a bit on a thing that popped out to me.

How are his iron levels, including ferritin? Usually a CMP and CBC don't catch ferritin, but it's been a cause of overwhelming fatigue and brain fog here also.

[Ann.without.an.e]

4 minutes ago, prairiewindmomma said:

On the vision front, is it just a refractive change in his eye? Pressures are normal, vessels and structures look fine? Is his eye teaming ok? I ask because ds had a refractive change in one eye and his brain was actually shutting off images from that eye.  He was functioning one-eyed, but didn't realize it, because his brain processed the change so efficiently. Side effects were exhaustion (from the brain working so hard) and balance and coordination issues.  Did solving the refractive change lessen any of the balance/coordination issues?

Is your ds moving enough to maintain core body strength and stamina? It's super hard when you're exhausted, but it becomes a compounding problem.

I don't think my thoughts cover all of the issues, but that's a bit on a thing that popped out to me.

How are his iron levels, including ferritin? Usually a CMP and CBC don't catch ferritin, but it's been a cause of overwhelming fatigue and brain fog here also.

His eye pressure and other tests are always good. He did some vision therapy to help his eyes work together and he had regressed some a little so now he is doing brock string exercises daily to make sure his eyes are working together. ETA: his eyes not working together is why they think he lost the vision in one eye. 

They didn't test ferritin. Hemoglobin was good though. I think my doctor will test it but I can ask just in case.

Thanks for your thoughts on the eyes ❤️ 

Edited July 11 by Ann.without.an.e

[Arcadia]

No idea about the medical issues. Is his middle weight gain fat or bloat? I have middle age tummy fat but I also have bloat. The tummy fat part unfortunately comes down to targeted exercise when diet is already clean. My bloat has been helped by eating more yoghurt.

As for blood draw, what helps is warm compress on my forearm, followed by a pressure cuff, then a vein scanner. Unfortunately, not all departments have a vein scanner but the labs for blood draw probably does have one. 

[Pawz4me]

36 minutes ago, Ann.without.an.e said:

 

 I have questioned Sjogrens for awhile with him.

Sjogren's was the first thing that popped in my mind while I was reading your post.

[freesia]

28 minutes ago, Ann.without.an.e said:

So sorry, I forgot to note that. His A1C was normal. It was high end of normal, but still in normal range. 

Thanks for asking about that. 

You might consider asking for a glucose challenge just in case. The middle fat matches, too. 

[KSera]

I'm sorry, that sounds very frustrating and doesn't sound like his dr has been super helpful. Diabetes was the first thing I was thinking to be ruled out, but sounds like that part has been done. (though I see Freesia just posted about a glucose challenge--that sounds like a good idea also) Other than that and Sjogrens, I'm surprised (but not suprised) that long covid hasn't come up. I almost snorted when you said the pediatrician called it "teen fatigue" 🙄. He has a lot of symptoms that are commonly seen with people post covid: fatigue, brain fog and other cognitive dysfunction, vision problems, unexpected weight gain, thirst. His labs have findings that are pretty common in long covid also (high esr, low lymphocytes, high neutrophils). The vitamin B level is likely because he is supplementing. You would have to have him go off the B12 for a period of time before the blood draw to get a more accurate one. Unfortunately, there's not a "long covid" test yet. It's a diagnosis of exclusion if everything else has been ruled out and the symptoms line up. Sometimes it's a little more clear with its timing onset than others (it can begin immediately or slowly and not be evident for many months after the acute illness has resolved).

Does he only drink water most of the time? Drinking tons of water can flush electrolytes and make one continue to feel thirsty. It would be worth seeing if drinking an electrolyte drink would help him feel less thirsty.

Hopefully your doctor will be able to figure something out and he gets back on a path to feeling well.

[LifeLovePassion]

Run a cortisol test and ACTH panel at 8am. 

[kbutton]

1 hour ago, Ann.without.an.e said:

Is the Vitamin B too high? Is this our issue now and he should stop taking it? Or is he not uptaking it on a cellular level somehow? I don't know how it works really and am not sure. 

It is my understanding (not super strong) that this can be true if you have malabsorption issues or an autoimmune condition called pernicious anemia. People with PA require shots to get B12 to absorb because they don’t make intrinsic factor. Other clues are high MMA levels and/or high homocysteine.

It is not easy to find consensus information on pernicious anemia.

I think folate issues can also cause B12 problems too.

1 hour ago, Ann.without.an.e said:

So sorry, I forgot to note that. His A1C was normal. It was high end of normal, but still in normal range. 

A high normal A1C is not reassuring in a healthy teenager.

1 hour ago, Ann.without.an.e said:

His eye pressure and other tests are always good. He did some vision therapy to help his eyes work together and he had regressed some a little so now he is doing brock string exercises daily to make sure his eyes are working together. ETA: his eyes not working together is why they think he lost the vision in one eye. 

I hope this is the cause and that therapy helps. Otherwise, eye issues can be how MS presents.

48 minutes ago, freesia said:

You might consider asking for a glucose challenge just in case. The middle fat matches, too. 

I agree. And if they think Type 2 diabetes with those results, I would definitely push to have antibody testing. A fair number of people diagnosed with Type 2 that have overlapping symptoms with Type 1 actually have late-onset type one (LADA or Type 1.5 are some ways this is referred to).

You don’t have to be overweight for this. 

[LifeLovePassion]

How is his sodium level and does he crave salt?

[Katy]

I’d have your doctor look at pernicious anemia and do the glucose challenge test too. 

[Kanin]

2 hours ago, Ann.without.an.e said:

His A1C was normal. It was high end of normal, but still in normal range. 

This would concern me greatly. Perhaps it's a sign of developing diabetes (but hopefully not!). The extreme thirst/peeing is a classic sign, as you know. I'm surprised the doctor wasn't concerned by that. It sounds like you made the right call making an appointment with your doctor.

[prairiewindmomma]

With a $25 monitor and pack of test strips from Stuffmart, you can just be checking his blood sugar throughout the day...morning numbers, 2 hours after his normal meal, etc. A 50g glucola bottle is the same as 28 jelly beans for a one hour challenge.  I don't recommend doing the interpretation yourself....I'm just saying you can get a fair bit of data on your own before you head in if you are needing to narrow down concern lists....

DD had diabetes insipidus, which has nothing to do with how your pancreas functions, but has a lot to do with the hormone ADH. It's rare, and weird, and not what I think is likely going on....but I just wanted to point out that high thirst/high urination can have other things driving it rather than diabetes.  I do think a closer look at blood sugars beyond the A1C is wise....

[Forget-Me-Not]

Has anyone checked him for diabetes insipidus? It’s not related to d. mellitus, and I believe it can’t be ruled out with an A1C. 

[prairiewindmomma]

28 minutes ago, Forget-Me-Not said:

Has anyone checked him for diabetes insipidus? It’s not related to d. mellitus, and I believe it can’t be ruled out with an A1C. 

DI has nothing to do with a A1C. DI testing initially is a 24h urine catch, they want a certain volume compared to body weight for diagnosis. Dd’s was neoplastic, but there are nephrogenic and other versions of DI. The differential happens after the confirmation of polyuria.

[Ann.without.an.e]

2 hours ago, KSera said:

 Other than that and Sjogrens, I'm surprised (but not suprised) that long covid hasn't come up. I almost snorted when you said the pediatrician called it "teen fatigue" 🙄.

Does he only drink water most of the time? Drinking tons of water can flush electrolytes and make one continue to feel thirsty. It would be worth seeing if drinking an electrolyte drink would help him feel less thirsty.

Hopefully your doctor will be able to figure something out and he gets back on a path to feeling well.

 

I've never thought of long covid. I don't know why this hasn't occurred to me except that I felt like things have been a little weird since his B tanked which I believe was before he had covid? I can't remember, I need to find records. 

 

He drinks only water, except for some hot tea in the morning. He loves plain hot tea with breakfast. I have wondered if he's simply drinking too much water but he has tried to cut back some without a lot of success. 

 

28 minutes ago, Forget-Me-Not said:

Has anyone checked him for diabetes insipidus? It’s not related to d. mellitus, and I believe it can’t be ruled out with an A1C. 

 

35 minutes ago, prairiewindmomma said:

With a $25 monitor and pack of test strips from Stuffmart, you can just be checking his blood sugar throughout the day...morning numbers, 2 hours after his normal meal, etc. A 50g glucola bottle is the same as 28 jelly beans for a one hour challenge.  I don't recommend doing the interpretation yourself....I'm just saying you can get a fair bit of data on your own before you head in if you are needing to narrow down concern lists....

DD had diabetes insipidus, which has nothing to do with how your pancreas functions, but has a lot to do with the hormone ADH. It's rare, and weird, and not what I think is likely going on....but I just wanted to point out that high thirst/high urination can have other things driving it rather than diabetes.  I do think a closer look at blood sugars beyond the A1C is wise....

 

Diabetes insipidus is definitely another thing that has crossed my mind. 

 

1 hour ago, Katy said:

I’d have your doctor look at pernicious anemia and do the glucose challenge test too. 

 

I will look into a glucose challenge

 

1 hour ago, LifeLovePassion said:

How is his sodium level and does he crave salt?

 

Sodium levels are normal which is surprising with the amount of water he drinks. It doesn't seem to be diluting his sodium. He doesn't crave salt that I can see or consume it in excess. 

 

1 hour ago, kbutton said:

It is my understanding (not super strong) that this can be true if you have malabsorption issues or an autoimmune condition called pernicious anemia. People with PA require shots to get B12 to absorb because they don’t make intrinsic factor. Other clues are high MMA levels and/or high homocysteine.

It is not easy to find consensus information on pernicious anemia.

I think folate issues can also cause B12 problems too.

A high normal A1C is not reassuring in a healthy teenager.

I hope this is the cause and that therapy helps. Otherwise, eye issues can be how MS presents.

I agree. And if they think Type 2 diabetes with those results, I would definitely push to have antibody testing. A fair number of people diagnosed with Type 2 that have overlapping symptoms with Type 1 actually have late-onset type one (LADA or Type 1.5 are some ways this is referred to).

You don’t have to be overweight for this. 

This is all very good to know, thank you. 

[Ann.without.an.e]

Here is the sodium potassium, etc. I think Potassium is barely normal but everything is normal except for calculated osmolality. 

 

Would DI make the sodium off balance? I need to look into that more. 

 

Edited July 11 by Ann.without.an.e

[ktgrok]

Had he been tested for Celiac since this started?

[Ann.without.an.e]

28 minutes ago, ktgrok said:

Had he been tested for Celiac since this started?

No, he's been gluten free for so long and he's miserable when he eats gluten so the test simply isn't worth it for him. He never eats it. 

 

ETA: his miserable isn't stomach issues at all. He feels like he's burning up inside. He also says it feels like someone has dumped sand in his eyes and they hurt and burn so bad. Not really celiac symptoms at all. 

Edited July 11 by Ann.without.an.e

[prairiewindmomma]

What eye drops, gels, and/or ointments are he using and how often is he using them? Is his lid hygiene good? Is he doing hot compresses also?

Was the dr concerned enough that they did the eye moisture tests like tear break up time and the schirmer’s (they would have put pieces of paper on his cheeks under his eyes and had him close them for 5 min)? 
 

 

[prairiewindmomma]

DI would usually make serum osmolality higher, not lower. 

3 off from the norm range isnt a very significant deviation either—totally explainable as a kid who is drinking a lot.

[Ann.without.an.e]

37 minutes ago, prairiewindmomma said:

What eye drops, gels, and/or ointments are he using and how often is he using them? Is his lid hygiene good? Is he doing hot compresses also?

Was the dr concerned enough that they did the eye moisture tests like tear break up time and the schirmer’s (they would have put pieces of paper on his cheeks under his eyes and had him close them for 5 min)? 
 

 

 

They always just assumed it was eye allergies and didn't really test further. The hard thing about kids and autoimmune stuff is that everything is assumed to be something else since they are "too young". I was told multiple times that my younger dd was too young and thin for Hashimoto's and when I finally told them to humor me and draw the labs, her antibodies were sky high and so was her TSH. 

 

 

30 minutes ago, prairiewindmomma said:

DI would usually make serum osmolality higher, not lower. 

3 off from the norm range isnt a very significant deviation either—totally explainable as a kid who is drinking a lot.

 

This was my thought too. I wasn't worried about the slight deviation in osmolality and figured it was due to so much water intake. That's why I didn't even list it in the first message. 

 

 

[BeachGal]

The dry mouth sounds like sicca which could be affecting his eyes, too.

Dry eyes can sometimes be helped by increasing omega 3s.

To increase his potassium, would he be willing to drink some coconut water? Costco’s Kirkland brand has no added sugar and has about 600 mg of potassium. A serving per day or so could help bring his numbers up.

A fasting insulin test might also offer some clues. Insulin can be high for years before blood glucose numbers look unhealthy.

I am also wondering if your son has a form of long Covid. The Covid virus, or inflammatory remnants of it, appear to be able to linger long after the initial infection goes away.

Dr. Seheult, quadruple board certified and one of the MedCram doctors, has quite a few videos about Covid including this one where he discusses using near infrared light to tamp down the pro-inflammatory effects of Covid spike proteins.

Seheult discusses how near infrared light was used in the study. It’s not difficult or dangerous (it is not UV light). A red/near infrared light belt costs about $100 on Amazon and can be done at home.

This is the study Seheult discusses in the video above:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451450/pdf/KCIB_14_1965718.pdf

MedCram has other videos about Covid and red/infrared light therapy (photobiomodulation) as well.

 

[ktgrok]

2 hours ago, Ann.without.an.e said:

No, he's been gluten free for so long and he's miserable when he eats gluten so the test simply isn't worth it for him. He never eats it. 

 

ETA: his miserable isn't stomach issues at all. He feels like he's burning up inside. He also says it feels like someone has dumped sand in his eyes and they hurt and burn so bad. Not really celiac symptoms at all. 

Gotcha. I will say, Celiac can cause all sorts of things, from anxiety to joint pain, doesn't have to be GI pain/issues. Some never really have noticable GI discomfort. My main reason for asking was the low vitamin B for no real reason, and bloated belly. 

Is he definitely reading labels and being careful of cross contamination for gluten? At 15 I imagine he's eating with other people more now, and could be getting glutened that way? 

That doesn't mean not to check for other AI issues that are indicated in dry eyes. As you know, when you have one, you are more likely to have another, so celiac and another would be common. In other words, I didn't mean Celiac could cause the eye issues, but might explain some of the other issues. But only if he is actually getting gluten in some form. 

 

[prairiewindmomma]

My kids eyes are autoimmune driven.  I am totally happy to backchannel discuss with you via pm, but the tests I mention above are the definitive ones for dry eye.  The dry eye would show up in your basic slit lamp exam. 

I'll toss this up here: https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/dry-eye and I'll also toss up some other stuff that would be on my radar around this: 

https://my.clevelandclinic.org/health/diseases/meibomian-gland-dysfunction

https://www.college-optometrists.org/clinical-guidance/clinical-management-guidelines/ocularrosacea

https://www.healthline.com/health/keratoconjunctivitis#types

As far as over the counter stuff goes:

1. Hot compresses, twice a day, for at least 5 minutes

2. After the morning hot compress, lid scrub routine: these are easiest: https://www.amazon.com/OCuSOFT-Scrub-Count-Inflation-Buster/dp/B0C9F5GMF2/ref=sr_1_1_sspa?crid=28H258116C9YD&dib=eyJ2IjoiMSJ9.SaFr7WKI9ZyOBNQVM6ArfJpyYspa-3LicbEePj50ZEeJlEPDzoB8kEkZ01nOqkXQBP7V53UMfPwhRQKNLWaPE5RQgd5-gYcbEWNJ0_gOs1nFo3NrkXyQ57Vh8a6Ei_LNCZBXC7jV7djUowwNQpyuqjaC9Lyt3lAdDsNgvI3eYHmD-JZku0QGEJQDQiuLpSX1MiPf6qoQL7CavIUPxrNNSzJ9qP3bHMBlHyirlcVNP8qex4AwE-A_MYVqSfdwXmaDwkgmdwcf76Nng2FkU6NjKuANTVUIYKMVylGBk-zApa8.BxWltLz9YgCbMVBDXTMAeI_MZEPqU8HuNnirmJgNAxU&dib_tag=se&keywords=ocusoft+lid+scrub+plus+wipes&qid=1720740152&sprefix=ocusoft%2Caps%2C142&sr=8-1-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1

3. pazeo/pataday .7% allergy drops, if he has known allergies

4. artificial tears: my kid likes the systane ultra lubricant eye drops--they do the big bottle in the morning, and carry around individual tubes of it to use as needed through the day

5. After the evening eye compress, an overnight ointment like this: https://www.amazon.com/Systane-Nighttime-Lubricant-Ointment-3-5g/dp/B001G0ML14/ref=asc_df_B001G0ML14/?tag=hyprod-20&linkCode=df0&hvadid=693428517731&hvpos=&hvnetw=g&hvrand=9876369675907517702&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9032905&hvtargid=pla-1641230059826&psc=1&mcid=7895056edf0e3663a37510c22270e4b3&gad_source=1

We ended up having to do Rx things beyond that, but this is the basic daily routine for two of mine.

[Ausmumof3]

I think this is probably not right given Vit B worked the first time but does he have the gene that makes people not process Vit B Correctly?

My first thought was also diabetes (increased likelihood post Covid) or long Covid. My teen is also stupidly tired at the moment and has constantly dry lips. I want to take him to a dr but he’s resistant.

[KSera]

7 hours ago, Ann.without.an.e said:

The eye doctor always comments on how he needs eye drops since his eyes are dry. 

Has he been to an ophthalmologist or just an optometrist? An ophthalmologist might have ideas for you. Sounds like multiple options for what could have set off the eye part of things, but from what I’ve seen, ophthalmologists have seemed a little more clued in to post Covid complications than primary care doctors. 
Just in case any of these resonate or have good solutions for symptoms (people have some various drops/gels that have worked for them):

r/covidlonghaulers/ Dry Eyes

[Ann.without.an.e]

1 hour ago, ktgrok said:

Gotcha. I will say, Celiac can cause all sorts of things, from anxiety to joint pain, doesn't have to be GI pain/issues. Some never really have noticable GI discomfort. My main reason for asking was the low vitamin B for no real reason, and bloated belly. 

Is he definitely reading labels and being careful of cross contamination for gluten? At 15 I imagine he's eating with other people more now, and could be getting glutened that way? 

That doesn't mean not to check for other AI issues that are indicated in dry eyes. As you know, when you have one, you are more likely to have another, so celiac and another would be common. In other words, I didn't mean Celiac could cause the eye issues, but might explain some of the other issues. But only if he is actually getting gluten in some form. 

 

 

No, he is super careful and he won't eat anything he isn't sure about. Since I also cannot use shared fryers, etc we rarely eat out and are super picky about where we eat. My older DS totally ditched all dietary restrictions around this age and didn't care about the consequences but this DS is super careful and cares. It is very uncomfortable for him so he has his own motivation. 

[Ann.without.an.e]

12 minutes ago, KSera said:

Has he been to an ophthalmologist or just an optometrist? An ophthalmologist might have ideas for you. Sounds like multiple options for what could have set off the eye part of things, but from what I’ve seen, ophthalmologists have seemed a little more clued in to post Covid complications than primary care doctors. 
Just in case any of these resonate or have good solutions for symptoms (people have some various drops/gels that have worked for them):

r/covidlonghaulers/ Dry Eyes

Optometrist but a very skilled one, not like Walmart lol. I thought the only difference between the two was that ophthalmologists perform surgery?

[Elizabeth86]

No idea. I just wanted to say welcome back. 
Also, this group is amazing for health related things and so much more. I think the world would be a better place if the folks here were running things. 

[KSera]

25 minutes ago, Ann.without.an.e said:

Optometrist but a very skilled one, not like Walmart lol. I thought the only difference between the two was that ophthalmologists perform surgery?

That might be just as good then. An ophthalmologist is a medical doctor while an optometrist is a doctor of optometry. You’re right that probably the biggest difference is the ability to do surgery. We’ve tended ourselves to go to an ophthalmologist if we had some thing more serious going on with our eyes. My family member with dry eyes just sees his optometrist for it though.

 

[Shelydon]

Testing for Sjogrens would definitely be high on my list. The doctor can do an autoimmune panel

[Ann.without.an.e]

2 hours ago, Elizabeth86 said:

No idea. I just wanted to say welcome back. 
Also, this group is amazing for health related things and so much more. I think the world would be a better place if the folks here were running things. 

 

That reminds me of something my sister sent me on instagram 🤣 

 

https://www.instagram.com/reel/C8ZeHCbsqFq/?igsh=cmQ0M280bnQ4a21x

 

 

[Arcadia]

12 hours ago, Ann.without.an.e said:

The eye doctor always comments on how he needs eye drops since his eyes are dry. 

My eyes tend to get dry. I don’t know the name of the tear test my eye specialist for strabismus did but the conclusion was that my tear ducts were actually very sensitive which means I basically run out of tears fast because any irritant would cause my eyes to tear. I think it would be good for your son to do the tests @prairiewindmomma suggested for dry eyes.

[ktgrok]

Just saw something about Thyroid Eye Disease on my Facebook feed and it reminded me of this thread. I’d never heard of it before. https://www.thyroideyes.com/about-thyroid-eye-disease/

[Ann.without.an.e]

She had a cancellation yesterday so she was able to see him sooner. She is pulling a good bit of labs and retesting his CBC. Hopefully this will give us some answers. 

I've attached the list. 

Hopefully this is a starting point. 

Thank you all for so much help 🙂 

 

 

[popmom]

I hope this round of labs will give y’all the answers you need. Gosh. I’m so sorry he doesn’t feel well. 
 

I have Sjogren’s—primary—so that’s immediately what I thought of. 
 

eta: if the ANA is positive but the SS-A/ SS-B is negative and you still suspect Sjogren’s, there is an “early Sjogren’s panel” that can be ordered. Not everyone with a Sjogren’s dx has a positive SS-a/SS-b.

Edited July 20 by popmom

[KidsHappen]

Vitamin B12 levels that high can cause all of the same symptoms as low Vitamin B12 levels. This is really one that has to be in the target range. My hubby had basically the same thing happen to him. His levels were so low as to cause symptoms so they had him taking high doses of B12 and things got better for awhile and then he started having symptoms again so they retested and his levels were too high. There is much less information out there but levels that high can cause all the same issues. 

Also I know you were off the board for awhile so I don't know if you were around for my severe neurological crash due to extremely low levels of B12 but my case was so severe and I waited way too long to get in to the dr that I suffered some permanent neurological damage. My symptoms sometimes improve and then I have a relapse. Has he had an MRI to check for neuro damage? Also they could check for MS with the same MRI. Many of the symptoms are the same. I have probably had 5 MRIs in the last 3 years and the only thing they have figured out so far is that they are pretty sure I don't have MS. They are currently trying to eliminate other AI disorders.

[Elizabeth86]

On 7/11/2024 at 11:04 PM, Ann.without.an.e said:

 

That reminds me of something my sister sent me on instagram 🤣 

 

https://www.instagram.com/reel/C8ZeHCbsqFq/?igsh=cmQ0M280bnQ4a21x

 

 

So true!