Your input please

[bws1565]

My daughter has had a diagnoses of Pandas several years ago, with small flares here and there, which we managed pretty OK. (looking into possible lyme now.)

My duaghter and I had a long conversation last night, (rare!) in which she explained that she is having "hearing problems" . She definitely hears. She just hears a second or two after everyone else. This is causing her difficulties in school and socially. She just cannot keep along with the conversation and tunes out, making her look socially uninterested and aloof. She does not have any learning problems. Can anyone relate?? What can we do about this? Is this Pandas/Lyme related?

 

Thank you

 

[dasu]

Do you think the listening issue may be due preoccupations with OCD thoughts and mental rituals? She also may experience more pressure from teachers and students at school then at home which can bring on fears, obessions etc. For other PANDAS kid I know of, they appear to do better at school due to the same pressure but then break down at home.

 

My two kids have a lot of noise going on, although its been difficult to get them to talk about it. The issue subsides some when they are not flaring. I would love to know what goes on in their minds, if it is knowable at all. Rare...

Edited January 5, 2015 by dasu

[mommybee]

I have two thoughts. The first is whether this could this be a focus problem. Attentional difficulties are a symptom of encephalitis. The second is about auditory processing. When the subject matter being discussed is complex (i.e. a lecture about involving new information in the classroom, or about something socially challenging), people with auditory processing difficulties often need more time to process the incoming auditory information. How old is your daughter? HIgh school can be challenging for bright students who have unidentified auditory processing glitches. Fine tuned neuropsych testing may be indicated.

[911RN]

I would say this is more CAPD- central auditory processing disorder.Has nothing to do with hearing and everything to do with the brain and how it processes information it hears.

[bws1565]

Thanks for your input.

 

To clarify, DD is 15. She has been having these issues on and off since she was five years old. We realized then that this was a problem. The material is not difficult. She even responds to her name with an extra second. If her teacher would tell the kids to take out a book, she would take it out when everybody else has already done so. If the principal enters the room, she would 'realize' a second or two after everybody.

 

She is currently OK Pandas wise. No serious OCD issues.

 

She was tested with a full neuropsychological assessment about four years ago. The psychologist realized the problem, but did not think this is auditory processing disorder (I asked twice!). He did note it to be 'odd' that she answers after an extra beat.

 

I never tested her hearing or other ear related issues. Should I do that?

 

I would like to know more about auditory processing disorder. Please explain further symptoms.

[mommybee]

I'm not a speech pathologist, but the best way I can think of to explain this is to say that people process input at different rates. You can take two folks with equal vision, reading ability and general aptitude and one might be able to read (and understand) at a rate of 60 pages an hour, while the other can only read half that quickly. Given the time each needs to finish reading the material, both will be able to answer questions about what they have read with equally good results. The only difference between the two individuals would be how quickly are able to process verbal information.

 

Auditory processing works in much the same way. Some people hear and make sense sounds faster than others. However, given appropriate processing time, most everyone can understand language.

 

Processing speed is not something you can change, but there are things slow processors can do do to compensate. Recognition or the situation is often the first step. Armed with this information, a slow processor will be able to manage situations better. When asked an opinion, she will know to request a little think time before responding . When presented with a lot of verbal information all at once, she might ask for a summary or clarification. If comfortable, she might even ask the speaker to talk more slowly. In an academic setting slow processors understand the importance of advance preparation before attending a lecture to reduce the amount of new information that needs to be processed.

 

One thing I should probably add is that processing unevenly is stressful if it's not managed carefully. Acknowledging, normalizing and providing strategies will probably help your daughter to compensate. Very few people have completely flat learning styles. We all have some things we're better and faster at than others and we levy our strengths to compensate for our relative weaknesses. The sooner she can be made to feel good about this, the less worrisome it will be for her.

 

Another thing I should probably add, is that my PANDA is OK too. But throughout his life his processing speed has ebbed and flowed. In retrospect, I realize that it was probably PANDAS related. During an encephalitic episode, his executive function and processing speed drops off precipitously and the last time he had a flare-up, he couldn't read at all. Because the healing process can take months after the more obvious symptoms abate, I think many children and adolescents with PANDAS deal with these fluctuations to some extent. While certainly not as disabling as the extreme anxiety and motor tics that they live with when they are sick, this must be very confusing at a time when they are trying to figure out who they are.

 

I hope this helps.

Edited January 8, 2015 by mommybee

[ktdommer]

Mommy bee your post is amazing.

My son's processing speed is far below his IQ. He is frustrated by it as are we as parents. I'm not talking auditory processing. The doctor believes it is an effect of bartonella mostly.

If your daughter has Lyme would it be congenital? Do you remember a bite?

It gets tricky knowing what might have been despite PANS or Lyme.

K

[qannie47]

My non Pandas twin was recently tested with very similar issues, amongst others. Testing flushed out a Very Slow Processing speed. He had done Very well with elimination diet, which fixed mood issues...However, I was convinced to try Conserta to address the Slow processing speed since that is a hard wired thing as Mommybee inferred.

 

The results were instant and amazing. At home I saw increased focus, better impulse control, and no figity behavior during homework. His reading became much more fluent, and he now will take the time to sound out hard words. I see that he is more excited about reading and his comprehension has increased.

 

School has reported the same and his teacher said the difference was so remarkable that she almost started crying in class she was so happy for him....

 

Dr Swedo talks about the effective use of medication with Pandas kids. She gives the example that the Root Cause does not rule out that medication can't still be helpful. If it helps, why not use it?

She also states that in her vast profiling of Pandas kids, she sees a lot of ADHD. Co-morbid or the result of inflamation/Pandas....hard to tell I suppose. My point, I am so pleased with the results with my one twin, that if his Pandas brother tests out similar, and if med is suggested, I will be open to it.

 

I see an upswing in my one twin's life quality on med. I'll take it. He is happier and feeling more successful.

Edited January 9, 2015 by qannie47

[bws1565]

I don't remember a tick bite on her, to answer that question. I do remember that she was not this way as a very young child. Could congenital Lyme be a factor if I have several more children and none are having these issues?

 

When she was 4 weeks old, we were upstate in a country area, and I do remember my mom showing me, that the back of her head, neck, posterior fontanel area had a huge bump. This took several months to resolve. I thought nothing about this then thinking it was a birth/head molding. I always think back, if we perhaps missed something very important?