18 y.o. DD's mysterious brain ailment, advice please

[Anonymous]

Anonymous wrote:There isn't always a trigger or reason for depression OP.

Her mysterious brain ailment may be depression -- which can, however, be mysterious to the patient and those around him or her.

Agree she still needs to be seeing a psychologist. Fine to rule out things like PANDAS though.

Yeah - and sometimes people just throw mind numbing drugs at something that isn't simply depression and you miss what is really going on.

[Anonymous]

I'm not understanding. What are her symptoms right now?

[Anonymous]

I don't have time to read all the replies but I agree with all Pandas/Lyme statements. Testing is SO unreliable and infectious disease doctors do not generally believe in those diseases or their effects. We are dealing with Lyme and it is exacerbated by mold, EBV and other diseases. Plus Lyme late stage is almost always a combo of infections, not one.

With your DD's symptoms, it is unlikely she would show up positive on testing even though she may be infected. You may find she relapses because she hasn't been treated. THese things can wax and wane but come back and are often more severe/new and crazy symptoms as time passes.

One way to see if it's a bacterial infection is to notice what happens if she ever has to take a broad spectrum antibiotic. Often kids will all the sudden be "well" again or they will crash and burn as the sudden die-off of large numbers of organisms occur and their bodies can't process debris out fast enough.

Look here for more info. http://www.childrenslymenetwork.org/children-pans-pandas/

Good luck and keep at it. It's likely she's not out of the woods yet but fingers crossed it was viral and it's calmed down. I highly recommend like you suggest she take it easy or take a lighter load, start at community college etc.

[Anonymous]

Is it possible that she experienced a traumatic event that just happened to coincide with the initial illness?

[Anonymous]

Anonymous wrote:Is it possible that she experienced a traumatic event that just happened to coincide with the initial illness?

+1

Drugs

social issues

I would look to those as well

[Anonymous]

Anonymous wrote:I don't have time to read all the replies but I agree with all Pandas/Lyme statements. Testing is SO unreliable and infectious disease doctors do not generally believe in those diseases or their effects. We are dealing with Lyme and it is exacerbated by mold, EBV and other diseases. Plus Lyme late stage is almost always a combo of infections, not one.

With your DD's symptoms, it is unlikely she would show up positive on testing even though she may be infected. You may find she relapses because she hasn't been treated. THese things can wax and wane but come back and are often more severe/new and crazy symptoms as time passes.

One way to see if it's a bacterial infection is to notice what happens if she ever has to take a broad spectrum antibiotic. Often kids will all the sudden be "well" again or they will crash and burn as the sudden die-off of large numbers of organisms occur and their bodies can't process debris out fast enough.

Look here for more info. http://www.childrenslymenetwork.org/children-pans-pandas/

Good luck and keep at it. It's likely she's not out of the woods yet but fingers crossed it was viral and it's calmed down. I highly recommend like you suggest she take it easy or take a lighter load, start at community college etc.

And there's a reason for that. Science does not support the existence of these so called diseases. (Not Lyme itself, this chronic Lyme phenomenon)

[Anonymous]

Does she have any other physical symptoms? There are a number of post-viral (sometimes post-bacterial) syndromes. Could POTS be a possibility? Can be accompanied by depression/anxiety.

Any family history of autoimmune type illnesses? This is anecdotal, but two of the three young women I know with Crohn's underwent a period of depression before the actual illness evidenced itself. Apparently, not so uncommon.

Also, has she been checked for basic deficiencies--Vitamin D, Vitamin B12, low iron? Would also recommend thyroid tests. At the same time, have the doctor run tests for inflammatory markers, CRP and ESR (do both). If one or both or these are elevated, it could point to an ongoing disorder. While you are at it do an ANA. These are all routine tests her doctor should be more than willing to run.

FWIW I had a DD that had a persistently high CRP that the doctors ignored. If it had been investigated when it first showed up, we would have figured out her autoimmune condition three years earlier.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is it possible that she experienced a traumatic event that just happened to coincide with the initial illness?

+1

Drugs

social issues

I would look to those as well

Or maybe it was mono. Or it's depression or anxiety that can often start during the teen years.

OP, it sounds like you're looking under every rock for the more unlikely causes. Not sure why seeking out all these medical professionals and tests ended up being less expensive than doing a neuropsych evaluation from the get go. You may need a second screening for depression or other mental health issue.

Also your kid's therapist isn't supposed to tell you why when child is 16-18 years old. Patient privacy. So the therapist may know "why" and is not sharing this with you.

[Anonymous]

Please recheck for Lyme disease, sometimes it comes back negative if you test too soon after the bite. Good luck no matter what it is, you are a great mom for making sure she gets all the help she needs.

[Anonymous]

Did she have headaches during the fever? It could have been viral meningitis. It happened to me. See a neurologist.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I don't have time to read all the replies but I agree with all Pandas/Lyme statements. Testing is SO unreliable and infectious disease doctors do not generally believe in those diseases or their effects. We are dealing with Lyme and it is exacerbated by mold, EBV and other diseases. Plus Lyme late stage is almost always a combo of infections, not one.

With your DD's symptoms, it is unlikely she would show up positive on testing even though she may be infected. You may find she relapses because she hasn't been treated. THese things can wax and wane but come back and are often more severe/new and crazy symptoms as time passes.

One way to see if it's a bacterial infection is to notice what happens if she ever has to take a broad spectrum antibiotic. Often kids will all the sudden be "well" again or they will crash and burn as the sudden die-off of large numbers of organisms occur and their bodies can't process debris out fast enough.

Look here for more info. http://www.childrenslymenetwork.org/children-pans-pandas/

Good luck and keep at it. It's likely she's not out of the woods yet but fingers crossed it was viral and it's calmed down. I highly recommend like you suggest she take it easy or take a lighter load, start at community college etc.

And there's a reason for that. Science does not support the existence of these so called diseases. (Not Lyme itself, this chronic Lyme phenomenon)

I am the pp who just posted to recheck for Lyme. I haven't been diagnosed for 3 years, and after that even infectious disease Dr. told me I am clear of it. Yet, I have no other explanation for even now having fog in my brain feeling, losing my perfect vision, being fatigued beyond anything I evre experienced. I got 21 days of antibiotics and they claim I am clear and all of these are side effects and me getting old. I am on array of medication of back pain, joint pain, migraines, allergies, all I know if that it all started after tick bit me and I didn't notice or got treated for three years. No viral infection goes without me getting really sick. My symptoms sound a lot like what OP is describing and yet doctors are making me sound insane. I am from Europe and going there this summer and many Drs there consider that treatment must take at least 6 months or more, so I will seek advice there, as I am getting nowhere here.

[Anonymous]

You mentioned sports, did she have a concussion at any point?

[Anonymous]

I just read something about encephalitis yesterday, sounds a lot like this! Don't ignore it. http://www.businessinsider.com/rare-disease-body-attacks-brain-2017-5

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don't have time to read all the replies but I agree with all Pandas/Lyme statements. Testing is SO unreliable and infectious disease doctors do not generally believe in those diseases or their effects. We are dealing with Lyme and it is exacerbated by mold, EBV and other diseases. Plus Lyme late stage is almost always a combo of infections, not one.

With your DD's symptoms, it is unlikely she would show up positive on testing even though she may be infected. You may find she relapses because she hasn't been treated. THese things can wax and wane but come back and are often more severe/new and crazy symptoms as time passes.

One way to see if it's a bacterial infection is to notice what happens if she ever has to take a broad spectrum antibiotic. Often kids will all the sudden be "well" again or they will crash and burn as the sudden die-off of large numbers of organisms occur and their bodies can't process debris out fast enough.

Look here for more info. http://www.childrenslymenetwork.org/children-pans-pandas/

Good luck and keep at it. It's likely she's not out of the woods yet but fingers crossed it was viral and it's calmed down. I highly recommend like you suggest she take it easy or take a lighter load, start at community college etc.

And there's a reason for that. Science does not support the existence of these so called diseases. (Not Lyme itself, this chronic Lyme phenomenon)

I am the pp who just posted to recheck for Lyme. I haven't been diagnosed for 3 years, and after that even infectious disease Dr. told me I am clear of it. Yet, I have no other explanation for even now having fog in my brain feeling, losing my perfect vision, being fatigued beyond anything I evre experienced. I got 21 days of antibiotics and they claim I am clear and all of these are side effects and me getting old. I am on array of medication of back pain, joint pain, migraines, allergies, all I know if that it all started after tick bit me and I didn't notice or got treated for three years. No viral infection goes without me getting really sick. My symptoms sound a lot like what OP is describing and yet doctors are making me sound insane. I am from Europe and going there this summer and many Drs there consider that treatment must take at least 6 months or more, so I will seek advice there, as I am getting nowhere here.

Were you asymptomatic for three years, and then your symptoms flared?

[Anonymous]

What you are describing sounds a lot like autoimmune encephalitis, which is basically when a person's immune system attacks the brain. Symptoms usually begin after an illness of some kind. It can come on quickly and dramatically (changes in behavior, seizures, hallucinations) or take months or even years to progress. It's only been recently "discovered" so most doctors know very little about it. Go here for more info:

https://aealliance.org

And here for doctors in your area.
https://aealliance.org/clinicians/

It needs to be treated quickly (usually high dose steroids are first line treatment). The sooner you start treatment, the better the outcomes.