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

[Anonymous]

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]

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?

IMO, OP, you have two tracks you should be pursuing: 1) diagnosis and treatment for underlying cause of brain function deterioration and 2) identification of current cognitive strengths/weaknesses and creating supports so DD can be as successful as possible. IMO, you need to pursue both tracks simultaneously.

You have gotten a lot of advice on track 1.

But, on Track 2, all of the bold screams for a neuropsych exam. IMO, you cannot ask your DD to put her life on hold while she/you pursues diagnosis and treatment, imagining some time when she will be all better. She may have gotten Bs with help from you, and that may not be what you think she's capable of. You may think she could have gotten into a better college. But, she is where she is now. A neuropsych will identify and describe cognitive weaknesses and strengths and describe accommodations. With a neuropsych exam and doctor-recommended accommodations, your child can go to the college disability/learning center and get access to 1) written class notes 2) extra time 3) preferential seating 4) tutoring support and 5) waiver of course load or time to completion requirements (similar to being on a reduced schedule). All of these typically help a child with the deficits you describe.

Many, many kids who are B students, even with support from parents, go on to do well at college. They spend less time in class, so they have more time to study. They typically can sign up for classes in their area of strengths, which helps them a lot. Your child can do some college classes and still pursue diagnosis ad treatment, and then if she gets better, transfer if she wants.

Colleges have no obligation to pay for a neuropsych. High schools do. Ask for it now before your child graduates. If declined because she is graduating, argue that the school failed its child find obligation when it failed to do a proper assessment before offering the full range of possible accommodations when she first fell ill and went on the reduced schedule.

[Anonymous]

A long shot here, but has she had a sleep deprived EEG? There is such a thing as post-viral epilepsy. If one of those 30 minute daytime EEGs is offered, don't bother IMO. People are often not aware when they have seizures.

[Anonymous]

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.

Wait, wait, wait. You are concerned because she doesn't do extracurricular activities? Because she isn't as studious as she was when she was younger? Why don't you just spend some time accepting the daughter that you have vs the one you want?

[Anonymous]

NP here -

OP I just want to commend you for looking for answers for your daughter and ask you to skip over all of the negative posters who are trying to say this is just a girl being a teenager.

When I was a junior in high school I underwent a similar personality change along with the drop in grades and depression. There was no trauma, drugs, and I remember just wondering what had happened to me and why. I was briefly sick around the time that it started but it was January and I figured it was just a cold. Finally a blood test indicated that it might have been caused by EBV, but we never did get any conclusive answers as to what exactly caused it. I ended up choosing to defer college and take a gap year and during the first couple years of college I had to struggle some with my expectations of myself and depression but on the whole I feel like I got mostly better by the time I was 20 or 21 and I've been fine since.

One experience of mine to consider with respect to your daughter's situation is that my ambition and drive were never the same afterwards. I still attended a top university, but I went from being a kid who thought there was nothing that I couldn't do if I just tried hard enough to someone who wanted to stick to things that I knew I could do well and not push myself too hard. My self confidence took a major beating and it's never recovered. It's wonderful that your daughter's friends stuck with her through being depressed - that was not my experience, though I was very lucky with my friends in college and I feel like life has turned out very well for me.

[Anonymous]

I understand where PP is coming from. Many kids in high school over time turn more and more of their attention to socializing and less to school work and extracurriculars.

But, If OP has conveyed this correctly, the issue here is a very sudden and noticeable decline in academic ability and the wherewithal to sustain extracurriculars immediately following an illness. It is the suddenness of an immediate very sharp decline that can be a marker of the autoimmune encephalopathies.

FWIW I have a child with PANDAS and have firsthand experienced kissing a normal child goodbye in the morning and coming home to a child who seemed possessed. It may be harder to imagine if you've never experienced it.

[Anonymous]

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?

PP who posted above here. We ruled out cancer and rheumatoid arthritis for DK but had begged pediatrician for testing several times - I told them DK has some sort of blood infection, DK was getting sick every month with fevers etc. DK had what turn out to be pretty classic physical with some neuro starting (upper body tics) symptoms of Lyme and many symptoms of tick co-infections (breathing etc) OP's daughter (if she had Lyme or tick infections) has more neuro symptoms - depression/brain fog, loss of intellect (some kids lose ability to read! Luckily it comes back with treatment). OP's daughter went downhill after a virus or infection and it started off something which she hasn't been able to pinpoint but is very real. I hope she can find some answers. Gotta run but will post a doctor's name who may be of help who is a neuro who knows how to deal and figure out neuro stuff - so OP if you are still checking here, look again later today.

[Anonymous]

Dr. Colleen Blanchfield in Reston, VA, neuropsych
http://www.cblanchfieldmd.com/

[Anonymous]

IMHO, I wouldn't trust the judgement of a mainstream infectious disease doc. They just don't know the state of the art testing. You may want to see Beth Latimer to rule out PANDAS, or have one of the docs at NIHA do specialized testing

[Anonymous]

OP, did you ever get any answers?

[Anonymous]

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]

ESR is also called the sed rate. It's a very common test. In some autoimmune diseases one or the other of ESR or CRP tends to be elevated. I think for RA it's ESR. Of course there are many with autoimmune diseases who do not have an elevated ESR or CRP; it's not required for diagnosis but elevated levels can be suggestive of an autoimmune disorder if you are otherwise not ill.

The mysteriously swelling knee together with a strong family history of autoimmune disease could suggest juvenile idiopathic arthritis. I do think it would be worth your while to see a rheumatologist.

[Anonymous]

Hi OP, I would love to hear how your DD is doing now. Were you able to get help from a rheumatologist? I hope you were able to find answers.