Borderline ASC but could be dyspraxia

[Lydiasmum]

I've just received dx that DD8 'does not meet the threshold for ASC at this time'. She has many traits but is only borderline, however it would be prudent to reassess around 10/11 years old when symptoms will have either lessened or be more obvious. Having just had SEN annual review with school nurse etc. it is now suggested dyspraxia may better explain her issues - main ones being anxiety, dysfluent speech, processing problems and motor delay, struggles with maths and understanding multi-step instructions, clumsy gait, terribly disorganised and untidy, can never find things, long-term memory great, short-term memory poor.

 

Just wondered if anyone can relate? We know without a doubt that her second layer is PANDAS.

 

 

[mama2alex]

Is ASC an acronym for autism? In the U.S. we refer to it as ASD (autism spectrum disorder), so that may be why no one has replied. I know there are at least a few parents on this forum dealing with full-blown autism, but anyone familiar with autism knows that PANDAS/PANS is related in some way. Many of the biomed treatments for autism are helpful for PANDAS/PANS and visa versa - diet, supplementation, chelation, addressing methylation, and IVIG come immediately to mind.

[rowingmom]

it is now suggested dyspraxia may better explain her issues - main ones being anxiety, dysfluent speech, processing problems and motor delay, struggles with maths and understanding multi-step instructions, clumsy gait, terribly disorganised and untidy, can never find things, long-term memory great, short-term memory poor.

 

Just wondered if anyone can relate? We know without a doubt that her second layer is PANDAS.

 

 

 

These were many of DD14's symptoms exactly.

 

Every single one of them resolved with treatment for the lyme coinfections bartonella (with antibiotics) and babesia (with herbs only), speech therapy, OT and PT. Her long term memory remains exceptional.

 

In our case each of these symptoms were medical issues associated with her infections. None were "psychiatric" or related to "autism", although she did have a diagnosis of Asperger's at one point.

 

DD's anxiety and panic attacks were caused by bartonella, and resolved pretty much immediately with antibiotics specific for that infection.

 

Her oral apraxia and motor delays started with her 15 month MMR and required several years of speech therapy (PROMPT method which retrains muscle awareness), PT and OT (for hand writing and other fine motor skills) to overcome.

 

Loss of motor function is one of the symptoms of PANS/PANDAS and DD lost obvious writing/drawing skills with flares of her infections.

 

Her inability to follow simple instructions (let alone multistep ones) was due to brain inflammation which produced her symptoms of encephalitis (light, sound, touch sensitivities, ADHD, stiff neck, headaches). Treatment for bartonella helped here, but it wasn't until we included babesia herbs that her executive function blatantly improved.

 

Because of her ADHD symptoms she was highly distractible by any and everything, and problem solving and especially math was an issue. Every night I sat with her and we would review the next days math - that way I could introduce new concepts and if she was too distracted in class to comprehend, at least she would remember some of it from the night before. She had an IEP with accommodations for extra time, fewer test questions, removal from class with supervision to keep her on task. She sat behind a screen so that she wouldn't be visually distracted and wore ear buds to decrease sound distractions. From JK - Grade 1 she wore a weighted vest.

 

She was extremely disorganised. I had to go to school every day (Grades 2-5) to clean up her desk and collect homework, find out what was on the agenda for the next day as well so I could introduce new concepts to her.

 

I had to dress her and brush her teeth daily because she was too distracted to do so herself. No amount of reminding would work. She had no concept of time and would need someone to take her to the bathroom at school and remind her to go back to class. She had to eat lunch with the remedial class because she would forget to eat.

 

It was a hard, hard time and I know exactly what you are going though. I am not the same person I used to be and I continually worry that she will relapse although she has been asymptomatic for a couple of years now.

 

I spend entirely too much time on the computer reading alternative medical sites and have little time/patience for frivolities any more.

 

Take care.

 

Louise

Edited February 26, 2016 by rowingmom