My DC was initially diagnosed with anxiety / executive function issues seven with some physical symptoms. Lab work was always perfect. Later diagnosed with serious autoimmune that only showed up very clearly on pathology / scopes - but not the usual labs, though doctors do see this in some cases. (Physical symptoms, however had progressed significantly)

Your DD may or may not have autoimmune. But many autoimmune are difficult to diagnose especially in early stages.

Most autoimmune do improve with diet so it maybe worth doing some of the protocol and see if improvement - but don't go real strict. Our specialist has advised that for another child who is showing some symptoms but tests don't point to clear diagnosis

There is no harm in trying unless you go extreme on elimination. But your DD, has to be motivated to do it

Anonymous wrote:

Anonymous wrote:

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?

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.

PP, Lyme is much harder to treat when you're after the initial exposure period. My dad had Lyme disease a decade ago and still deals with flare-ups and repercussions. A 3 week course of antibiotics is really not enough! You need to find a doctor that knows about Lyme disease!

Have you had an MRI done at least?

Anonymous wrote:I don't understand what a neuropsych exam would do. We just had one done for my son. It tests things like processing speed and math computational skills. I don't think it would help OP figure out what is going on with her daughter, especially if they didn't have a baseline test to compare it to.

Here are some ways in which a neuropsych can help:

1) As you can see upthread, a lot of PPs doubt the mom's assessment of the child as being worse off cognitively. These PPs think that the Mom has an overinflated sense of what the child should be able to accomplish or achieve. Even the executive functioning coach said, "nothing is wrong." A neuropsych can provide concrete pieces of data that show ability and achievement. The ability is shown by IQ. The achievement is shown by various WIAT or WJ tests in reading, math, writing, listening comprehension, etc. When ability and IQ are discordant, it raises a red flag that something is wrong. That something could be -- learning disability, brain damage from illness or injury or attention problems. On the other hand, when ability and achievement are within a similar range, the implication is that the child is functioning normally. For example, my DD had a concussion, several years later, cognitive testing showed clear deficits in attention. Although she was a very high functioning child academically, these deficits were causing problems and stress at school. From the school's perspective, nothing was wrong because DD was an A/B student in all advanced classes. From my perspective, I knew that she continued to struggle in ways that she had not before the concussion. We would not have known this without cognitive testing.

2) Cognitive testing can identify areas of weakness across cognitive functions, and thus provide clues as to where dysfunction lies in the brain. This data can provide clues to different types of illness or disorder. For example, in older persons, speech and language assessment can often differentiate between different kinds of dementia. To be overly simplistic: if you have memory problems the diagnosis is likely to be Alzheimers but if you have word-finding difficulty with good memory, the diagnosis is likely to be logopenic aphasia. Different diagnosis have different treatments or compensations.

3) Baseline is helpful but not necessary for a couple of reasons. First, assessments are usually done on standardized normed instruments, so you have a number that represents performance in comparison to population and you usually also have an ability number to compare to. Second, in certain situations early performance in school can be used as a proxy for comparison. If my child had done well on state exams but now was performing poorly in math achievement, it would raise questions, even if the data is not an apples to apples comparison.

4) Finally, neuropsych assessment can quantify a number of "softer" diagnoses, like attention, anxiety or depression/mood disorders. Again, these symptoms can often be dismissed as just "over worrying" when there is nothing really wrong, or they can be diagnoses that are provided while the real problem goes untreated. This happened with my DD, whom many teachers criticized during concussion recovery as being dramatic, or moody, or anxious, when she was suffering from real, physical symptoms of brain injury. Neuropsych helped by giving us concrete evidence of cognitive problems and ruling out anxiety and depression.

Did ID check for CMV? Mono symptoms are most of caused by EBV, but can also be caused by another common virus called cytomegalovirus CMV. It can cause the same long lasting (chronic) fatigue after the obvious illness as can EBV. I don't know why, but doctors often fail to test for it - even after ruling out EBV. I think it is overlooked because it most often causes no symptoms or at most cold-like symptoms in most healthy people. In some cases, though, it presents as flu-like or even mono (which is really just a group of symptoms)... Might be worth asking - it is an easy blood test. Though, as with EBV, recovery often just takes time - the energy level can be very slow to recover...

Thyroid

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don't understand how OP has determined her daughter has a brain illness. Or an illness at all. She lost interest in some things. That's not an illness. You say she's accepted that something happened to her physically. Is that because you convinced her of that?

+1
I asked twice what the symptoms are. No response. But DCUM has diagnosed her with everything from lake borne brain parasites to west Nile to Ebola. What are the child's symptoms other than losing interest in activities and falling grades and brain fog??

In fairness to the OP, this isn't a court of law and this thread has stretched several pages. In fairness to DCUM, the OP did ask for help in diagnosing a mysterious brain illness.

In the end, it may not be the kid with the brain illness.

Is this really necessary?

This is the SN forum. Usually Jeff deletes the nasty posts.

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.

OP.

I've returned. The posts this morning were nice, but they've gotten a bit rough.

I really appreciate the posters who suggested possible explanations for what's wrong with DD. As I mentioned before, her symptoms are subtle.

I will try to find a neurologist and a rheumatologist to see her. There may be something we've missed.

Anonymous wrote:

Anonymous wrote:I don't understand how OP has determined her daughter has a brain illness. Or an illness at all. She lost interest in some things. That's not an illness. You say she's accepted that something happened to her physically. Is that because you convinced her of that?

+1
I asked twice what the symptoms are. No response. But DCUM has diagnosed her with everything from lake borne brain parasites to west Nile to Ebola. What are the child's symptoms other than losing interest in activities and falling grades and brain fog??

Seriously, this is the craziest thread ever. Maybe op's kid just got more imterested iin her social life than academics.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I don't understand how OP has determined her daughter has a brain illness. Or an illness at all. She lost interest in some things. That's not an illness. You say she's accepted that something happened to her physically. Is that because you convinced her of that?

+1
I asked twice what the symptoms are. No response. But DCUM has diagnosed her with everything from lake borne brain parasites to west Nile to Ebola. What are the child's symptoms other than losing interest in activities and falling grades and brain fog??

OP has said she gets "B"s and got into a less than stellar college.

I want to see her Instagram, Snapchat, Facebook, Kik, and Timblr accounts in lieu of a neuropsych eval

Is this the modern day ink blot test?

Anonymous wrote:

Anonymous wrote:I don't understand how OP has determined her daughter has a brain illness. Or an illness at all. She lost interest in some things. That's not an illness. You say she's accepted that something happened to her physically. Is that because you convinced her of that?

+1
I asked twice what the symptoms are. No response. But DCUM has diagnosed her with everything from lake borne brain parasites to west Nile to Ebola. What are the child's symptoms other than losing interest in activities and falling grades and brain fog??

In fairness to the OP, this isn't a court of law and this thread has stretched several pages. In fairness to DCUM, the OP did ask for help in diagnosing a mysterious brain illness.

In the end, it may not be the kid with the brain illness.

I would take a closer look at her thyroid. People can have autoimmune thyroid disease that doesn't show up clearly in thyroid testing. Have them test her free t3, free T4 and thyroid antibodies. That will tell a lot more than a TSH test that is in the normal range.

Test for west Nile.

Anonymous wrote:

Anonymous wrote:I don't understand how OP has determined her daughter has a brain illness. Or an illness at all. She lost interest in some things. That's not an illness. You say she's accepted that something happened to her physically. Is that because you convinced her of that?

+1
I asked twice what the symptoms are. No response. But DCUM has diagnosed her with everything from lake borne brain parasites to west Nile to Ebola. What are the child's symptoms other than losing interest in activities and falling grades and brain fog??

OP has said she gets "B"s and got into a less than stellar college.

I want to see her Instagram, Snapchat, Facebook, Kik, and Timblr accounts in lieu of a neuropsych eval