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

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

If you can't afford a neuropsych on your own, you might try to request an IEP and see if the school will provide any assessment. All schools have what is called a "child find" obligation. That means that they are obliged to find, assess and accommodate all children with disabilities. A child who suffers an illness and whose performance in school then drops might be exhibiting a medically-based disability.

It's also quite common for bright kids to be able to mask some kind of learning disability or attention problem but then fall apart in HS, when the workload and organizational expectations increase dramatically. It could be that the illness and the drop in academics are correlated but not causative.

The problem is, in 10th or 11th grade, you probably could have successfully convinced the school that they had a duty to assess. If your child is literally about to graduate, then the school can just drag it's feet, because once graduated, they have no further responsibility.

She had an illness and then had long lasting symptoms . She doesn't need a 5 k neuropsych.

A neuropsych is $4K and will more likely be covered at KKI or Chidren's especially if the kid is presenting with physical, mental health issues.

These "symptoms" have lasted two years. It coincided with a viral infection, but the OP has done dozens of medical tests with nothing to show for it. The change in behavior may have nothing to do with her kid getting sick. OP's kid may not need a neuropsych but she should have a mental health screening by a psychiatrist. A lot of mental illnesses have their onset in puberty. She may need anti-depressants.

It's weird for the OP to say that she couldn't afford a neuropsych when she could afford all these others specialists. It's disconcerting that she thinks that her daughter is in the one in denial about a "brain illness."

OP, I'm not trying to discount your impressions/instincts as a mother. There may be something undetermined and medical in nature going on, however, if whatever IT is, it's had a considerable impact academically on your kid. That's why a neuropsych may be valuable information.

Lastly, I would have her tested for celiac disease (an autoimmune disease). It shows up very differently and can trigger at any time when someone is under stress. The illness may have triggered it if your DD has the gene. It can cause fatigue and brain fog. If your DD eats wheat, she needs to keep eating it so that the blood test is accurate.

[Anonymous]

I'm not trying to be a jerk, and I'm broke so I understand the financial burden diagnosis hunting can be, BUT, if your daughter has something like encephalitis, time is of the essence. 4K is nothing when it comes to her health and life. Please get her checked out.

[Anonymous]

Anonymous wrote:I'm not trying to be a jerk, and I'm broke so I understand the financial burden diagnosis hunting can be, BUT, if your daughter has something like encephalitis, time is of the essence. 4K is nothing when it comes to her health and life. Please get her checked out.

It's been 2 years so it's probably not: http://www.webmd.com/brain/tc/encephalitis-topic-overview#1

[Anonymous]

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.

[Anonymous]

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.

I agree, it will not get a diagnosis. It will tell you where she is weak, like memory, comprehension... but you need a diagnosis.

Neurologist, that is your next step.

This sucks, I am sad for you and your daughter.

My son's friend is dealing with the same thing...cancer.... chemo can really mess with your learning.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

If you can't afford a neuropsych on your own, you might try to request an IEP and see if the school will provide any assessment. All schools have what is called a "child find" obligation. That means that they are obliged to find, assess and accommodate all children with disabilities. A child who suffers an illness and whose performance in school then drops might be exhibiting a medically-based disability.

It's also quite common for bright kids to be able to mask some kind of learning disability or attention problem but then fall apart in HS, when the workload and organizational expectations increase dramatically. It could be that the illness and the drop in academics are correlated but not causative.

The problem is, in 10th or 11th grade, you probably could have successfully convinced the school that they had a duty to assess. If your child is literally about to graduate, then the school can just drag it's feet, because once graduated, they have no further responsibility.

P.S. Why/how did you get the reduced course load? If the school just allowed you a reduced course load without an assessment of why, that would be an indication to me that it failed in its child find duty. The school has an obligation first to support students in a full course load, then consider reduced course load. I say this because my child also had an illness which has made school difficult for her over the years. Each time the school has pressured her to take a reduced course load or tried to convince us that that was the only option available. It is not, and to push a child into reduced coursework without evaluating and trying to address disability needs is to fail in the child find duty.

What?!!! Just shut up.

I don't understand why you are so hostile? What is wring with the above comments? Are you OP?

[Anonymous]

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.

+1. Neuropsych are DCUM's favorite tool, recommended for any and all special needs.

[Anonymous]

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?

[Anonymous]

The knee thing is interesting--you could try a rheumatologist, especially if she complains of other joint pain. Start by asking the doctor tomorrow if they would test for rheumatoid factor since she has a symptom and it runs in the family. Also, as I recall, in RA if an inflammatory marker is elevated it generally is ESR (also called sed rate), not CRP.

I agree that rheumatologists ones are among the best diagnosticians. But your DD is 18 and you will find it very hard to find pediatric specialists that will accept your DD. Will likely have to go to an adult specialist.

If you have good health insurance it can cover all kinds of testing and specialists, but it will almost never cover a neuropsych exam. So I can see where OP has been able to get lots of testing done but would find paying for a neuropsych a struggle.

[Anonymous]

This reminds me of people who think their kid got autism from a vaccine because their kid started showing signs of autism after getting a shot--not realizing that the age of immunization is also the age where autism tends to show up.

There might be something wrong with OP's kid related to her illness. There might be something totally different physically or psychologically wrong. Or school work got harder later in high school and OP's kid grew up and has different interests and isn't a genius.

At a certain point, and I'm not saying OP is at this point, it probably makes sense to work with the kid (now adult!) you've got.

[Anonymous]

Anonymous wrote:

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.

+1. Neuropsych are DCUM's favorite tool, recommended for any and all special needs.

Because the OP said that whatever has been going on for the last two years has been affecting her grades and interests in academics. Neuropsychs can assess for anxiety. It's possible that this kid has anxiety and nothing else going on medically. Or it's possible that it's just a different, undetermined medical condition. Or possible that it's both.

In any case, she may need accommodations for academics from this point forward. She can't get help without a neuropsych evaluation.

[Anonymous]

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??

[Anonymous]

I had meningitis. There is no way meningitis can be confused with a cold or a light illness. It is a life changing illness.

[Anonymous]

Only on DCUM is going to a less than competitive college a special need calling for multiple medical tests.

[Anonymous]

This is a typical adolescent who found friends and boys more interesting than schoolwork. It's a story as old a story time.
Puberty and hormones are a wonder.
OP has said countless times that she is interested in her friends and socialization and is getting worse grades. Which easily translates into boys boys boys and social media.
This is not rocket science and is probably quite hilarious to OP's daughter that her mother is convicted she has a brain disease.
Heck, my entire group of friends had the exact same disease from 16-18!