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

[Anonymous]

Anonymous wrote:I'm really out of my personal comfort zone here, but my husband is a pediatric rheumatologist and he sees lots of kids who have autoimmune flares after viruses. It seems to me that a single viral infection can set off an autoimmune disease. I wasn't going to even weigh in until you mentioned occasional joint swelling as well. This all sounds like something my husband deals with on a daily basis. It might be worth getting a referral.

I would also disagree with the poster who said rheumatologists are only good in their narrow field. That might be the case in some fields, but pediatric rheumatologists are like the Dr. House's of the profession. Don't know what's wrong with a patient? Send them to rheumatology because rheumatologists deal with inflammation anywhere in the body: bones, brain, eyes, muscles, skin, etc. They also deal frequently with diseases that cross over between the physical and mental - like pain disorders.

Good luck and trust your gut.

Thank you! This is a very helpful post.

We do have autoimmune diseases on both sides of our family, so you might be onto something.

I will find a pediatric rheumatologist (even though DD is now 18, this started when she was 17). It certainly can't hurt to explore this avenue. I would never have thought of this!

[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??

A good friend had a brain illness that everybody thought was a mental breakdown. At his wit's end, he finally had a spinal tap and found that it was West Nile. Your daughter probably doesn't have West Nile, but stumped doctors have a tendency to give up on people and to blame the patient --if you feel in your gut that this is something external impacting your kid, please keep looking.
Also, my own husband has been horribly sick with Lyme for two years. Doctors will tell you that 6 weeks of antibiotics does the trick, but if someone is diagnosed long after the fact he or she may need antibiotics for YEARS. Doctors don't understand Lyme disease either, sadly. One way to tell is if your kid has a physical reaction to the antibiotics -- my husband felt like he was having a heart attack from them, so he stopped for a while, but it was actually the medicine working and nobody told him it would feel like that. He also has strong reactions to garlic, oregano and vitamin c. You could harmlessly experiment with those, crazy as it sounds. I'm sorry you are going through this.

[Anonymous]

Was she tested for other tickborne diseases like babesia?

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Was she tested for other tickborne diseases like babesia?

Yes. All negative.

[Anonymous]

Anonymous wrote:

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??

A good friend had a brain illness that everybody thought was a mental breakdown. At his wit's end, he finally had a spinal tap and found that it was West Nile. Your daughter probably doesn't have West Nile, but stumped doctors have a tendency to give up on people and to blame the patient --if you feel in your gut that this is something external impacting your kid, please keep looking.
Also, my own husband has been horribly sick with Lyme for two years. Doctors will tell you that 6 weeks of antibiotics does the trick, but if someone is diagnosed long after the fact he or she may need antibiotics for YEARS. Doctors don't understand Lyme disease either, sadly. One way to tell is if your kid has a physical reaction to the antibiotics -- my husband felt like he was having a heart attack from them, so he stopped for a while, but it was actually the medicine working and nobody told him it would feel like that. He also has strong reactions to garlic, oregano and vitamin c. You could harmlessly experiment with those, crazy as it sounds. I'm sorry you are going through this.

She was definitely NOT tested for West Nile. I'm going to see her doctor tomorrow, so we can ask about that. Hmmmm. So many things to think about.

I was really despairing when I posted last night, but you've all given me so many ideas to explore. Thank you!!

[Anonymous]

Anonymous wrote:

Anonymous wrote:I'd go to a neurologist. I would not take a year off. She may not want to go back. Let her and give support her.

What would the neurologist test for? The exec functioning coach thought there was NOTHING wrong with DD. That's what's so confusing. My gut says my DD is not the same kid intellectually, but what's the matter? And how to fix it?

FWIW, an executive functioning coach isn't qualified to say "nothing is wrong with DD". Frankly, without a full neuropsych, no legitimate executive functioning coach should make a judgment like that. It is quite common for kids to have strengths and weaknesses that mask each other so the child appears to function more or less "normally" but would be able to function at a much higher level or different way if the weaknesses were supported.


It's a major red flag to me that you are working with an executive functioning coach that is not really knowledgeable about brain-based disorders. I would never say this about a client. That is a determination to be made by a neurologist and/or a neuropsychologist.

I would say to a parent that a client is having is performing on an average level or is or is not having difficulty with material that is typical in my experience. But, that is quite different than saying "nothing is wrong."

[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.

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.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:Did she have headaches during the fever? It could have been viral meningitis. It happened to me. See a neurologist.

This.
Meningitis or encephalitis.
The Lyme stuff is not relevant to this girl.

[Anonymous]

I would see a pediatric neurologist. We like Dr. DiFaxio at children's in Rockville. I think an MRI and/or an EEG would be helpful to see if there is any swelling in the brain or seizure activity.

[Anonymous]

Meant DiFazio

[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.

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.

[Anonymous]

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.

[Anonymous]

I'm still confused. What are her symptoms right now?