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

[Anonymous]

Adding my voice to a kid diagnosed (and being treated for) autoimmune encephalitis. Have been to a ton of doctors, including a week of testing at the Mayo Clinic, and this is the diagnosis they gave us. I'd be happy to chat with any of the other posters upthread dealing with autoimmune encephalitis

[Anonymous]

Anonymous wrote:I think OP's child is experiencing autoimmune encephalitis. Unfortunately, I'm way too familiar with this, as DS has had it. We had close to a dozen different diagnoses (and were told he was just suffering anxiety, tics, etc.) before getting to the bottom of it (Dr. Latimer was a HUGE lifesaver initially and now he sees a doctor in a different state). A mother knows when something is off with her child. OP- Don't give up on this until you find out what's happening.

I, too, thought of this. A close friend's child had this as a teen. However, she was much more physically ill and hospitalized, but I think it can be much milder. The personality, executive functioning and other changes sound very similar.

I definitely think she should go on to college in the fall if she wants to, especially if her grades are Bs.

[Anonymous]

Anonymous wrote:

Anonymous wrote: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.

OP here.
No, DDs symptoms sound nothing like the symptoms described in that link you posted.

But, what's similar, I think, is that something, a virus or some other infection, attacked her brain.

The infectious disease specialist told us we'd never know what attacked her brain. And her symptoms are very subtle. She appears totally normal. DH and I are the only ones who notice that something's different about DD.

I am wondering whether steroids might help DD??

A friend had a mysterious ailment that landed him in the hospital with severe symptoms (confusion, difficulty walking). His doctors thought it was meningitis, but tests were negative. They finally gave him steroids, and he recovered. His doctors still don't know what caused his illness.

I wonder if DD had a milder version of something like that??

Since she's still not really herself, there could be traces of the original infection, in which case steroids would help. And I second the pp who suggested seeing a rheumatologist if you suspect any type of infection, since they are the experts in inflammation.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It definitely sounds like a form of an autoimmune neurological disorder, probably not PANDAS, but similar. Have you read Brain on Fire? I'd make an appointment with Dr. Beth Latimer. She's your best bet locally.

OP.
Thanks. No, I have not read Brain on Fire. I will get it.
I've not heard the term autoimmune neurological disorder. DD has no typical PANDAS symptoms.
One of the therapists we consulted believes DDs issues are PANDAS or similar, and she referred us to Beth Latimer. But Dr Latimer's fees are too high, and she does not accept our insurance.
Do you have any other pediatric neuro suggestions?

Dr Wells at Children's National in DC.

[Anonymous]

Anonymous wrote:I think OP's child is experiencing autoimmune encephalitis. Unfortunately, I'm way too familiar with this, as DS has had it. We had close to a dozen different diagnoses (and were told he was just suffering anxiety, tics, etc.) before getting to the bottom of it (Dr. Latimer was a HUGE lifesaver initially and now he sees a doctor in a different state). A mother knows when something is off with her child. OP- Don't give up on this until you find out what's happening.

Me, too. A sudden and rapid change in behavior has nothing to do with being an adolescent. That's absurd. And I bet those who are saying, wtf?, have never experienced what the OP is describing. You get it when you get it. Good luck OP. don't give up.

[Anonymous]

<<Dr Wells at Children's National in DC.>>

I have a child treated by Dr. Wells. I'd love to connect with others who see her...

[Anonymous]

I'd be extremely leery of steroids at this point because they can do tremendous damage is she has certain infections you haven't figured out yet. It will destroy her immune system. Steroids are immunosuppressive. Do your research and resist until you know more. Also, those symptom lists don't mean you have every symptom. DK has 4+ infections and probably 1/8 of the symptoms on the lists for the infections. Some reveal themselves over time as the infection grows.

[Anonymous]

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?



No, I had symptoms but they were so out of place and I didn't know about Lyme disease, I thought people were exaggerating the dangers. I had a rash, they gave me some cream for it, then I started getting headaches and eye floaters(like a lot non stop), then I started getting foggy brain, muscle aches and pains, increased migraines, constant congestion and sinus infection, I thought my allergies are flaring.. I went to eye doctors, I went to ENT, I went to Orthopedic, pulmonologist, I went to allergy Dr. I thought I was having the flu, sinus infection and I was... My fatigue was attributed to breathing problems and allergies. So all the issues I had occasionally before were multiplied. I was on prednisone, etc...I went from not never being a person who can fall asleep and sleep for a long time to a non stop sleeping, going to bed at 10pm and waking up after 11am on the weekends, being a zombie during the work week. After all these doctors, I asked my nurse practitioner to test to Lyme, she didn't think of it, and came back positive in over 5 strands. They gave me 21 days of doxycycline and said I was fine now, and I was much better for a while, and now I am not, I know that any time I get too much work, too tired, I will get sick. I am having a really hard time with how fast I deteriorated from a very active and healthy person to fatigued, every single bigger task is possibly going to make me very sick person.


To this poster, lots of experience with late stage Lyme and you are definitely still having issues. See Jemsek Clinic in DC for help.

[Anonymous]

<<I think OP's child is experiencing autoimmune encephalitis. Unfortunately, I'm way too familiar with this, as DS has had it. We had close to a dozen different diagnoses (and were told he was just suffering anxiety, tics, etc.) before getting to the bottom of it (Dr. Latimer was a HUGE lifesaver initially and now he sees a doctor in a different state). A mother knows when something is off with her child. OP- Don't give up on this until you find out what's happening.>>

Who is the out of state doctor?

[Anonymous]

Anonymous wrote:Have you had an MRI done at least?

Yes. MRI was normal.

[Anonymous]

Anonymous wrote:Have you had an MRI done at least?

Yes. MRI was normal.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I think OP's child is experiencing autoimmune encephalitis. Unfortunately, I'm way too familiar with this, as DS has had it. We had close to a dozen different diagnoses (and were told he was just suffering anxiety, tics, etc.) before getting to the bottom of it (Dr. Latimer was a HUGE lifesaver initially and now he sees a doctor in a different state). A mother knows when something is off with her child. OP- Don't give up on this until you find out what's happening.

I, too, thought of this. A close friend's child had this as a teen. However, she was much more physically ill and hospitalized, but I think it can be much milder. The personality, executive functioning and other changes sound very similar.

I definitely think she should go on to college in the fall if she wants to, especially if her grades are Bs.

OP. I looked through the symptoms, and they are pretty severe. DD has a knee that gets sore every once in a while (she says it burns), but otherwise has no physical symptoms, no depression or anxiety (checked thoroughly by a psychologist), no sleep problems. She says it takes her a lot longer to do schoolwork, she can't remember as much information as she used to be able to remember, and she's forgetful, loses track of things. She was never like this before. She works very hard, but only gets Bs, even with help from me, constant reminders, and she's on a reduced schedule.

PP, do you know of anyone diagnosed with autoimmune encephalitis who had almost no physical symptoms, just cognitive ones?

[Anonymous]

<<PP, do you know of anyone diagnosed with autoimmune encephalitis who had almost no physical symptoms, just cognitive ones?>>

Yes. Many.

If I were you, I'd contact a Dr. with the Autoimmune Encehalitis Alliance. Dr. Wells is one. Explain the situation. There is antibody testing that they can do. The gold standard testing is through the Mayo Clinic, other doctors do this testing. Some children have rare antibodies. My child is one who does.

[Anonymous]

Sore knee is classic of late stage Lyme as is the brain fog. I do think you should further pursue this angle. See www.lymedisease.org for more information. Sometimes knee will swell, sometimes just pain for many.

Lyme testing is less than 50% reliable so you can't really go by the blood test - it's reprehensible but the way it is. Clinical diagnosis by a LLMD is what you'd need but rule out everything else you can first. If you work with an LLMD you will know pretty quickly once on antibiotics if that's what you are dealing with. There are usually several infections involved by the time you get to late stage. Lyme past the first stage moves throughout the body and suppresses the immune system (like HIV), causes inflammation and exactly the symptoms your DD is describing. Many get a flu like illness in the weeks after bitten and no bullseye. Has she ever complained of a sudden stiff neck? That's another common symptom in kids as is headache(s).

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP what does your daughter say about why she stopped doing activities that she was previously involved with? Does she agree with you that this illness caused some kind of change in her? You have not mentioned her point of view in your previous posts and given that she is nearly an adult, it seems very relevant whether she perceives herself as ill, or just growing up and changing.

Excellent question.

DD knows she's fallen apart academically, and she's accepted that something has happened to her physically. At first she was in deep denial, but when she started getting F's, she realized that something was wrong and started accepting help.

As far as dropping her activities, I think she's in denial that her brain illness has caused her to quit everything. She says she's not interested in the things that used to interest her. She still has a lot of friends and likes to socialize with them. And she's cheerful and funny. She used to care intensely about her grades, but now she's OK with Bs because that's the best she can do.

I think her brain can't handle more than school and socializing. She takes fitness classes occasionally when a friend suggests it, but she has no initiative. I'm torn between wondering if she's still in denial or if part of what's wrong with her brain is that she can't see herself very clearly.

I'm not the pp. did she perhaps fall and hit her head? (Which could have caused a brain injury.)Or perhaps it could be anxiety?

Don't have her miss a year of school. That will give her more time to be depressed.