Chronic Nausea/Headache/Extreme Exhaustion in 13 Year Old Male

@mbmama - I’m so sorry to hear about your son’s illness!
It is a tough age for a child to be away from school and friends too.
My son also missed a lot of school in 6th and 8th grade to mystery illnesses- probably viral
You mentioned your son was tested for Mono with Monospot- was he also tested for EBV? Epstein Barr Virus definitely can cause illness like the one your son has- enlarged lymph nodes too.
The consistently low WBC points to a chronic viral infection.
There are medicines for chronic nausea- such as Zofran. Check with your pediatrician, or he has to wait to see the gastroenterologist.
Having been through similar with my son years ago, I can also suggest that your pediatrician could consult with an Infectious Disease Specialist - even Pediatric one if you are close to a University Medical Center.
I’m surprised in a way that the hematologist dismissed you. Was this a Pediatric Hematologist?
Even if some viral illnesses seem to have to run their course, having a diagnosis is valuable.

Hello @mbmama and welcome to Mayo Clinic Connect. This has to be so difficult to watch your son feeling like this. It sounds like you are certainly pursing a diagnosis but coming up against some speed bumps to getting the answers you (both) need.

@astaingegerdm has graciously joined you to share her experiences. What do you feel is your next step and are you looking for options for second opinions?

Thanks for your insight @astaingegerdm. How old is your son now, and is he better?

We actually did see ID at the beginning of June. She thinks there is likely something non-infectious happening. We had a follow-up yesterday and they are going to do some investigation and get back to us. The most important thing right now is symptom management - he is in constant pain and discomfort and so far we have not been able to lessen any of it. She wants to see if the post Covid clinic or post Lyme clinic will see him to assist with symptom management as what he is experiencing is very similar to both of these.

I do not think they tested for EBV . We are in Canada and not much gets ordered outside of the norm. I really had to push for the Lyme test.

GI did see us the other day and gave a diagnosis of post infectious IBS. I am not convinced as he does not fit the diagnostic criteria. The only symptom he has is nausea. He mentioned we have seen a lot of people and at some point you just have to stop and draw the line. I kind of feel that he was just throwing a diagnosis at us that was kind of benign. He said treatment was reassurance, peppermint oil pills, regular bowel movements and mindfulness.

We are waiting on results of a stool sample we did through a naturopath that tests for viruses, bacteria, and parasites.

Next steps are waiting for our rheumatology appointment and trying to have a “normal ish” summer.

@mbmama -
GI gave you a no- acute- illness diagnosis. Who is he/she to say when you are stopping looking for answers?
I grew up in Sweden with similar health care system. My daughter moved there and she is now struggling to get answers for herself. It’s like hitting your head against a wall.
Have you heard of nausea bands? They are elastic wrist bands with a plastic ball that when placed correctly will act like acupuncture pressure. They really work. One can find them in pharmacies- or online.
My son is an adult now- he is basically healthy.
His illness in 8 th grade started with GI virus symptoms and then continued with exhaustion and body pain. He was eventually diagnosed with Fibromyalgia- unusual in boys. The viral illness triggered it. His sister had been diagnosed at 15. Both saw a Pediatric Rheumatologist. They were taught healthy sleep habits as well as meditation- similar to mindfulness, I guess.
Your ID doctor’s idea to be seen in a post Covid or post Lyme clinic for symptom management is excellent.
Anyway, keep asking questions.
I would appreciate it very much if you give us follow up posts, especially after the visit with the Rheumatologist.

@astaingegerdm I have heard of nausea bands. So far nothing has worked for the nausea including typical nausea relief. I wondered about fibromyalgia for my son as well. What happened with your son sounds very similar. I will continue to update. Thanks for listening!

Try the nausea bands. They take the edge off the nausea.
The most reliable is prescription Zofran ( ondansetron).

I am so sorry you and your son are going through this. It's painful to watch them struggle through the day when they should be energetic kids. My 11 year old daughter has some similarities. Any exhaustion or stress puts her in bed for days with nausea, headaches, chills, extreme fatigue. No appetite at all. She has done extensive bloodwork and finally has the chronic fatigue diagnosis. I am taking her to the Mayo clinic in Minnesota in 2 months for a full week evaluation and treatment plan. I'm not sure if any of this helps but feel free to reach out or even complain when you're feeling down.
Mmunden28@yahoo.com

Were they able to help her? My grandaughter - same symptoms for about six months now. Nausea and fatigue daily. She takes anti nausea meds, they help some. Hasn't been to school in months. Has seen the gaunt of doctors, the next will be an inner ear specialist. She is positive for EBV, negative for Lyme. She has had covid twice prior to all of this. but symptomless both times, we would not have known except she had to get tested due to others in close proximity with it. I am debating finding a way to go to Mayo if they can help I will do about anything.

Was the rheumatologist helpful?