Anonymous wrote:

Anonymous wrote: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.

Thanks for this post.

New poster here and I hadn't even finished reading all of the replies but when I read that her knee gets swollen that triggered me. I had "lyme or a Lyme similar infection back in 2009. I have never tested positive but I had all the symptoms. Joint pain, brain fog, low energy etc. I also have a knee that was swelling up with fluid about every 3 months. I was treated with antibiotics and got my symptoms almost back to normal but the knee issue still remains. I now see a rheumatologist who prescribes sulfazalazine to keep the joint inflammation under control. I also have attention issues/brain fog.

DD doesn't have any physical symptoms. No tics, OCD, aches, headaches, she sleeps well. That's why this is such a mystery!

Oh, she has one physical symptom: Her knee gets swollen and sore every once in a while, but we thought it was from sports, all of which she's dropped.

She's just SLOWER, mentally. Her short-term memory, focus, organization are not what they were during her first two years of high school, when she got all As and was very sharp and pulled together.

DD had a lot of these tests. All were negative. She had a borderline Lyme test, so was treated with antibiotics for six weeks, with no change whatsoever in her condition (this was a year ago). We took her to a Lyme specialist, who ruled out Lyme pretty definitively. The infectious disease specialist concurred. It's not Lyme, we're pretty certain.

We do have a family history of autoimmune illnesses (lupus, RA), which makes me wonder if a rheumatologist might help? I'm in completely new territory here.

CRP was normal, vitamins, thyroid, all normal. I have not heard of ESR. I'll ask about that. ANA I think was done and normal too.

Crohn's? No digestive issues whatsoever.

Thanks again for all these posts. They are really helping me think about what could be going on with DD.

Anonymous wrote:

Anonymous wrote: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).

Not OP, but what are the things that your ruled out?

Anonymous wrote:

Anonymous wrote:Depression and anxiety can cause all sorts of brain fog and disconnects
What does she want to do?
Is it Possible she's ever dealt with an eating disorder or sexual abuse?
You are focusing on a cold, but could an event have triggered issues?

OP.
No, we took her to three therapists. All agreed there was no trauma, abuse, drug use. That's what's so mysterious. She had zillions of blood tests, CT scan, etc. She was checked a few months ago for anxiety and depression. Therapist said she's all clear, no need for therapy. She is not depressed. Seems fine, just academically not the kid she used to be. And she doesn't do much besides school and socialize. Before this brief illness, she was involved in many things. Now, almost nothing.

Anonymous wrote:

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 wrote: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).