Mary M Posted November 2, 2013 Report Share Posted November 2, 2013 My oldest dd, NONPANDAS,19 years of age, has had a cough for two weeks. All of a sudden in her college class on Thursday she finds she can not write for one hour. She told me this morning. No doctors available so I took her to urgent care. They said she has allergies....and prescribed cough medicine. UGH! I'm dosing antibiotics since we returned from the urgent care, at least until I can talk with a PANDAS specialist. I see no other symptoms...anyone? Mary from Michigan Link to comment Share on other sites More sharing options...
PowPow Posted November 2, 2013 Report Share Posted November 2, 2013 Mentally or physically or cognitively could not write? What was the reason: Motor skills? Spaced out? Confusion? Link to comment Share on other sites More sharing options...
Mary M Posted November 3, 2013 Author Report Share Posted November 3, 2013 Cognitively understood how to write...could not physically make her hand and arm create the act of writing. What she wrote during this hour is decidedly different in spacing, letter size, and legibility. Fully aware of her inability while it was occurring. She was concerned and made several attempts to augment the process...trying to write faster, slower, rubbed her arm, rotated her wrist, moved the pencil into other possible grips in attempts to better control the movements. Seems like some function of dysgraphia. Link to comment Share on other sites More sharing options...
EAMom Posted November 3, 2013 Report Share Posted November 3, 2013 (edited) Wow! Hopefully you saved samples of her writing. I would be interested to know what a good PANDAS doc thinks of this. With the cough, I wonder about Mycoplasma. Can you get blood work done for that? Did any other symptoms show up? It also wouldn't hurt to get a throat culture and baseline titers in case this is a situation of stealth strep. (Although the antibiotics could definitely cause a false neg on the culture.) Edited November 3, 2013 by EAMom Link to comment Share on other sites More sharing options...
Mary M Posted November 3, 2013 Author Report Share Posted November 3, 2013 I do have the writing samples. She takes copious notes and the difference is noticeable, as is the point at which she re-gained function. I thought mycoplasma pneumonia, too. She had myco-p when she was 6 years old. She was treated with abx at that time. I provided that info to Urgent Care in the H&P. They seemed nonplussed with that information. Urgent care did a rapid (negative) and was sending it in for a culture so I will have pre-abx lab results. At least they listened when I explained PANDAS. They had never heard of PANDAS before. In 2010, Dr T ordered everything he orders for PANDAS patients for all 3 of my children. This particular daughter had no history of anything that would be billable to insurance sp we paid cash for her lab work. The other 2 daughters had "billable reasons" to do the labs. So I have good baseline data-including strep titers (ASO, antiDNAse . Still no other symptoms... Link to comment Share on other sites More sharing options...
tpotter Posted November 3, 2013 Report Share Posted November 3, 2013 Very much sounds like PANS. Do you have a local doc there who you can get to run tests? PANS definitely can cause changes in handwriting, and sounds very much like my DS who suddenly couldn't speak (started as stuttering, then became difficult to move his mouth, and eventually couldn't speak for about 1 hour.) Both have to do with motor control. I would check for mycoP, strep, CPneumonia, viruses, even suspect lyme, and co-infections. But, yes, definitely get to goo doc, and get this under control immediately. She very possibly was exposed at school. Good luck. Please keep us informed. rowingmom 1 Link to comment Share on other sites More sharing options...
rowingmom Posted November 4, 2013 Report Share Posted November 4, 2013 Agree with PANS as well. In the fall of 2010, before treatment had started, DD (then 9, grade 4) forgot how to hold her pencil. She couldn't remember the grasp. I had to search the internet and find a youtube video that explained it. Only after watching this for some time was she able to reconstruct the motor movements. Motor abnormalities were a constant issue for DD. These included oral apraxia (loss of motor ability in the facial and tongue muscles resulting in loss of speech), inability to pedal a bike (one foot would pedal forward while the other insisted on pedalling backward). Some of this may have been simply age-related, but definately abnormal among her peer group. Link to comment Share on other sites More sharing options...
MMC Posted November 4, 2013 Report Share Posted November 4, 2013 This sounds similiar to what happened to the reporter, Serene Branson, when she was on the air reporting from the Grammies a couple of years ago. Its on youtube. Although, it affected her speech instead of writing. She was just speaking gibberish. They thought she had a stroke, but it was diagnosed as a complex migraine. Any migraine history with you or her? EAMom 1 Link to comment Share on other sites More sharing options...
smartyjones Posted November 4, 2013 Report Share Posted November 4, 2013 couldn't write just for the one hour and then the ability came back? has she ever had any issue with migraine headaches? it is actually a neurological issue -- doesn't always need a headache. you can google migraine with aura and hemiplegic migraine. my integrative doc believes many migraines are caused by infectious issues in the brain. hemiplegic migraine is a subset of migraines with aura and are quite rare, but people have gone to ER with hemiplegic migraine and been treated for stroke. Link to comment Share on other sites More sharing options...
smartyjones Posted November 4, 2013 Report Share Posted November 4, 2013 MMC -- that's bizarre! we were riding on the same wavelength at the same moment! Link to comment Share on other sites More sharing options...
MMC Posted November 4, 2013 Report Share Posted November 4, 2013 smartyjones, that IS bizarre...posted within 2 minutes of each other! maybe it was meant to be... Link to comment Share on other sites More sharing options...
Hopeny Posted November 5, 2013 Report Share Posted November 5, 2013 My two cents would be to consider non PANS causes as well, worth having a neuro workup. good luck Link to comment Share on other sites More sharing options...
3bmom Posted November 5, 2013 Report Share Posted November 5, 2013 Do neuro's start with bloodwork and infections? I wouldn't want to wait to find out. What did she eat before it happened? My non PANDAS son had focus issues in college and we found out his blood work matches my PANDAS son but no strep. Very high 20x normal HHV -6 and Lyme. His eating habits at the time were typical of a teenager. Dr T says a genetic marker he found in patients more than MTHFR is Parkinson's. not to be dramatic but the majority of corn in the US is patented as a pesticide and that includes soda. If she has been sick the brain barrier might not be able to do its job. Since you know Dr T I would go straight to him. He covers both worlds. Good Luck and keep us up to date. Link to comment Share on other sites More sharing options...
Mary M Posted November 8, 2013 Author Report Share Posted November 8, 2013 May I just thank you all of your amazing, intelligent, insightful responses! So much more thoughtful than those we saw in Urgent Care. Our local integrative physician has ordered multiple blood tests (immunologic for the most part). He is also retesting her Nutri-Eval. This particular dd is very food conscious...organic, low or no sugar, gluten free, dairy free...she really works at being healthy....not your typical college student. I never had headaches until the past couple of years and now they are defined as migraines. With proper endocrine support my headaches are now mild. I will honestly study all you have provided and I will let you know if the blood work identifies anything. Mary from Michigan Link to comment Share on other sites More sharing options...
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