18 y.o. DD's mysterious brain ailment, advice please
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Anonymous
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. |
Anonymous
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
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? |
Anonymous
OP. Thanks. I think this could be the right approach. But, test her for what? She's been tested for all sorts of infections, and every single test came back normal. (Thyroid, Lyme, strep titers, vitamin levels, mono, a whole bunch of other things.) What would a rheumatologist test her for? She has no aches and pains. No OCD symptoms, which are typical of PANDAS. She's been cleared by a therapist. She is not depressed or anxious. Her diet at home is good, but that's an area that may need more work. |
Anonymous
I would recommend seeing a doctor at NIHA in Friendship Heights. We love Dr. Bradley. Did the previous doctors do a simple lyme test or a full Western blot test? |
Anonymous
OP. Thanks. No, I have not read Brain on Fire. I will get it. I've not heard the term autoimmune neurological disorder. DD has no typical PANDAS symptoms. One of the therapists we consulted believes DDs issues are PANDAS or similar, and she referred us to Beth Latimer. But Dr Latimer's fees are too high, and she does not accept our insurance. Do you have any other pediatric neuro suggestions? |
Anonymous
Interesting idea. No lake swimming. Yuck, though. Ewwwww. |
Anonymous
Thank you for this link. Very interesting. DD's personality is back to normal (she's cheerful, funny, sociable), but her activity level and drive and grades are very different than they were before her brief illness (a cold, basically) triggered something last year. We took DD to an infectious disease specialist who tested her for many things (can't remember them all, but a LOT of tests). All were normal. I'm wondering if a neurologist might be the next step? The infectious disease guy (very experienced), said he's seen people have neuro issues after a brief illness. He said it's usually caused by a virus, which is long gone, but has damaged the brain. But he's not a neurologist, and he wasn't very clear on what we should do next, except get an exec functioning coach, which we did. |
Anonymous
Neuropsych is out of our budget. We have no out of network coverage, and can't swing the $3K for the test. I've tried, believe me. Neurology, tests, MDs are covered, but not psychologists. We've asked about drug testing. All the therapists said, it's not drugs. DD has no money, so I don't know how she'd buy drugs. Her friends are very clean and nice. Drugs seems extremely unlikely. |
Anonymous
Thanks for this post. 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
I am wondering about meningitis/encephalitis after reading the link a PP posted. I'm wondering if you can have a very mild case?? I can't even remember DDs symptoms. She might have had headaches. She missed a few days of school. I wouldn't have thought twice about it if she hadn't suddenly gotten depressed, like overnight, and become unable to study for very long. It was very sudden. Only later did I link it to her illness. |
Anonymous
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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. |
Anonymous
| PP here. Also, get a referral to a peds rheumatologist. They deal more frequently with these kinds of issues whereas adult rheumatologists have to spend a lot of time dealing with arthritis and old-people kind of problems. |
Anonymous
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?? |
Anonymous
| 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. |