What medically is going on with DS1

[hillview]

DS1 is 16. Healthy, no medical issues — on occasion over 10 years has had a bad cold that developed into asthma for a very short period (weeks). 3 days ago I noticed he was pale looking. Yesterday he was still pale, he said he was short of breath doing simple things, and light headed when he stands up. He almost looks jaundice to me. He went to the doc today and they did a simple standard neuro exam and checked reflexes and blood pressure all normal. they did blood tests (not yet in and I don’t know what bloods were drawn). Other info
- I am anemic but it is assumed due to my very heavy periods
- he fainted (?) in the bathroom last year and spend 24 hrs in the ER and had 3 cardio grams that showed nothing as well as a follow up with a cardio expert and it was all fine/nothing
- in the last 7 days he had 3 AP and 1 SAT test
- he skipped lacrosse playoff game today which he would never normally do
- he has been tested for covid 5 times in the last week (DH had covid 14 days ago) and has been negative, he is double vaccined and has never been positive for covid, he had no symptoms of a cold/covid
- he says he doesn’t feel well and symptoms are light headed and short of breath carrying his backpack around school but no other symptoms.

If his blood work comes back fine what would you suggest? He is for sure not “well” but I cannot figure out what to do next.

[KpbS]

I'm sorry your DS isn't feeling well! I wonder maybe mono or perhaps dysautonomia or POTS. https://childrensnational.org/visit/...nomia-and-pots

[MSWR0319]

I'm sorry your DS isn't feeling well! I wonder maybe mono or perhaps dysautonomia or POTS. https://childrensnational.org/visit/...nomia-and-pots

I was going to suggest POTS. DS got diagnosed about a year ago after he passed out standing up. When he stands up quickly does he gets dizzy? See black? Feel nauseous? You can take
His blood pressure and heart rate laying down and then stand him up and take it again heart rate should go up, blood pressure should go down. Have he remain standing for up to 10 minutes and continue to check blood pressure and heart rate every 2 minutes. It flares with growth spurts, stress, weather changes, etc for DS. Since diagnosis I’ve learned about a lot of boys we know that have had issues but we’re never diagnosed because they’re doctor told them it was just growth and hormones and they’d outgrow it. DS had a similar experience when the neurologist asked him if he ever sees black when he stands up. The doctor said he sees it a lot in teen boys because their blood volume hasn’t caught up with growth and symptoms would eventually get better in the next few years. Symptoms got worse and we got a formal diagnosis. Fluid, salt, and meds have really helped but he’s home this morning because he has a horrible headache from it.

ETA: I reread your post and see that he is lightheaded when he stands up. This is definitely a POTS symptom, as is chest pain and feeling out of breath. You can have him drink a bunch of electrolytes (Pedialyte works best for DS and see if that helps him at all)

[Melbel]

I suggest testing for tick-borne infections, preferably with a more sensitive lab such as IGeneX. Babesia in particular causes SOB and hemolytic anemia.

Lyme/Bartonella/Babesia can cause dysautonomia such as POTS. You can do a "poor man's" tilt table test at home, testing BP and HR lying/sitting/standing waiting 5-10 minutes. Avoid testing after eating. An increase of 30-40 bpm may indicate dysautonomia such as POTS. Note that POTS is a label diagnosis for symptoms, and does not address the root cause. Dysautonomia is very common with Lyme/Bartonella/Babesia. 3/4 of us with these infections have POTS in my own family. Hydration, electrolytes (Nuun, Liquid IV), and compression socks may help. Treating the root cause (infections) has helped immensely.

Given Vx status, I would also be concerned about possible myocarditis. Cardiac MRI and Troponin levels would need to be checked.

[hillview]

Thank you all. Doctor called at 9 pm last night, DS1 has a hemoglobin count of 8 and has large cells (?). He is getting more tests done today and being referred to a hematologist. I have a history of anemia however we believe it is due to my very heavy periods — no other causes has been identified. DS of course does not have this …. Hoping for more answers soon. Thank you all for your feedback I will also look into some of these.

[chlobo]

Thank you all. Doctor called at 9 pm last night, DS1 has a hemoglobin count of 8 and has large cells (?). He is getting more tests done today and being referred to a hematologist. I have a history of anemia however we believe it is due to my very heavy periods — no other causes has been identified. DS of course does not have this …. Hoping for more answers soon. Thank you all for your feedback I will also look into some of these.

Hmm. I'm seeing this could be a b-12 deficiency. Hopefully, it is something simple like that and easy to address. Definitely look for a root cause.

[Melbel]

Thank you all. Doctor called at 9 pm last night, DS1 has a hemoglobin count of 8 and has large cells (?). He is getting more tests done today and being referred to a hematologist. I have a history of anemia however we believe it is due to my very heavy periods — no other causes has been identified. DS of course does not have this …. Hoping for more answers soon. Thank you all for your feedback I will also look into some of these.

My anemia was also blamed on periods, but persisted after uterine ablation. My hemoglobin levels are now perfect after treating Bartonella and Babesia (both cause hemolytic anemia -- destruction of red blood cells).

The large red blood cells is call macrocytosis. B12/folate deficiency is another listed cause. Seeking Health has a combination better absorbed product that we have used to decrease homocysteine levels.

[georgiegirl]

Doctors LOVE to blame heavy periods for anemia. I am often anemic and my doctor blamed heavy periods even though I told her on several occasions that I don’t have heavy periods (just one moderately heavy day and then light the rest, which is within the range Of normal ), and I had to get pretty aggressive to get it taken out of my chart as the cause. My boys have a hemoglobin abnormality that was found on their newborn screening, and that can cause low iron stores and anemia (I assume I have it as well, but you need some sort of special sequencing to determine it.)

I hope you find some answers soon, and I hope he starts to feel better.

[nfceagles]

POTS is the first thing that came to my mind too, but I would continue looking into anemia and even COVID despite the negative tests given DHs status. Were any of the tests PCR tests?


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[essnce629]

Thank you all. Doctor called at 9 pm last night, DS1 has a hemoglobin count of 8 and has large cells (?). He is getting more tests done today and being referred to a hematologist. I have a history of anemia however we believe it is due to my very heavy periods — no other causes has been identified. DS of course does not have this …. Hoping for more answers soon. Thank you all for your feedback I will also look into some of these.

I'd ask them to test for celiac disease. It can cause anemia and did so when my FIL was diagnosed way back in his 20s. Celiac disease causes you to not be able to absorb the nutrients from your food. It's a simple blood test to check for antibodies.

Has he had any GI symptoms? DS1 has ulcerative colitis and had low hemoglobin when he was diagnosed. But this was after months of bloody stool and cramping.

Anemia alone can cause the paleness, rapid heart rate, out of breathness, and dizziness. This all happened to my best friend's DD who had a hemoglobin of 6 and needed 2 blood transfusions.

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