Mary M

Parents of children with PANDAS/PANS/LYME will meet Sat, Feb 21, 2015 from 4pm-9pm in Livonia, Michigan. All are welcome! Please PM for specific location.

Bump--this event will take place tomorrow..all are welcome...PM me for details

Great Lakes Area Families to gather in Livonia, Michigan Sunday July 13 at 3:00 PM PM me for details All are welcome-PANDAS/PANS/Lyme/Coinfections Mary from Michigan

Dd has been debilitated for many months. She stopped taking augmentin and all supplements Dec 17, 2013 as per her "they were not working". Had IVIg #3 Aug 8/9, never improved, only got worse. Has a dental cleaning appt scheduled for Tuesday so started on Clindamycin 3 days ago and I am seeing definite positive changes in function. Vocal tics are non existent, they were continuous, even during sleep. She was able to do school work on Friday. Engaged in social interaction with family and friends Friday night and Saturday night. Has anyone used clindamycin long term? Our ped was concerned about using it for the dental cleaning but the pediatric dentist suggested it. So I am wondering....do we risk C. diff for function? Mary from Michigan

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

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...

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.

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

I had a PANDAS parent report to me that her teen dd appeared in remission from PANDAS until each menstrual cycle...an integrative MD evaluated the teen's hormone status and discovered her hormone levels to be "menopausal". Appropriate supplementation has improved her function significantly.

We have not ever been prescribed clinda but did have a negative response when a cephalosporin was added to replace augmentin (local Dr thought it would be good to vary the abx to "see if another abx could kill any rouge infectious agents). It was a disaster, setting us back weeks... I will also add that we have had 2 IVIgs (1.5 g/kg) and both had a "worse before better" effect. Additionally, every time a flare erupts ANY decrease in abx yields an increase in symptoms/dysfunction.

I have two children currently in college and neither required proof of vaccination...however, neither elected to live on campus in a dorm so that may be an important consideration.

This was very much our experience. It can be painful to relive the symptoms...however, it is reassuring to know that the IVIg is working.

PANDAS dd/my dh is a mechanical engineer.

Your PM box was unable to accept more messages so I will post this here: I am currently a volunteer data collector for a study that states "the purpose of the study is to understand the meaning of the PANDAS experience through a study of the language and metaphors used to describe the lived experience". Should you require further information you may contact me at mmcrombez@gmail.com Mary Crombez

Thanks to everyone who has been interviewed thus far...and, to those who do not have an appointment yet, thank you for waiting patiently. As you know, the more data we have, the better the research so we are grateful to everyone participating and will try to get each and every one who has responded into the calendar. Mary Crombez

My dd still suffers at times from the "difficult waking". She is now 15 and in a very functional place in terms of her PANDAS. She describes her morning feeling as the most difficult time of her day. She is disoriented upon waking. She struggles to enliven. The only medication she takes is augmentin, prophylactically. She also takes various vitamin supplements but she does not take a sleep aid like melatonin. Her arousal level is extremely low. She must be alerted numerous times each day to wake up. Now, many would say this is typical for a teen but she herself describes it as not being in control of her waking. She attempts to wake and can not. There are times she does not even recall when or who attempted to wake her. She feels angry and frustrated upon waking. What remains of the OCD challenges her during waking and preparing to move on with the rest of the day. She has reported that this part of her day is unlike any other part of her day. I'd love an answer to this...

Thank you all who have responded to participate. We are working hard to make contact with convenient days/times. We have added more data collectors to help expedite the process. Mary

PANDAS/PANS/PITAND all accepted in the study. Any known or unknown etiology accepted. Mary

My dd felt alone was better than with others. There was nothing we could have done to change the sleep pattern until the healing reached a point that such a change could occur. You do the best you can under the circumstances you are in....this is not a disorder for the faint of heart.

Girl/boy...doesn't matter...it's the PANDAS that we all share. But to answer your question....yes, the symptoms have pretty much subsided which makes me think this was a crisis healing event/herxing. We will see the homeopath next week but will not take another dose. The doses for homeopathy are so diluted it is hard for me to wrap my mind around it being such a significant reaction. We have used homeopathy for illness in the past (colds, fevers, even warts). The homeopathy would seem to decrease the symptom severity but I would not say that in the past we saw such a marked change...from one dose...for so many days. When we used it for warts, it took weeks for the warts to begin to change and months for them to be gone. This was such an overnight event. But for our dd PANDAS was overnight...so perhaps the constitutional method made her react this way. I might also add that the homeopath was concerned about finding just the right constitutional remedy. She really researched my dd, her symptoms, spoke with both of us at great length, had both of us fill our numerous documents, surveys, interviewed us for hours. She did her homework but with the complexity that is PANDAS...she came up with 3 separate remedies to try at very slow intervals over the course of the next 3-6 months, one at a time. Perhaps we started with the wrong remedy. Perhaps the healing crisis is not to be avoided...in any case, this time of year is probably not the best time to tinker with anything if she is functional.

Thanks so much for responding. I did believe it to be a herx of sort but this forum always reassures me, that's why I posted. The homeopath we are using works in our integrative/biomedical doctor's practice. She is collaborating all homeopathic care with the main Dr. I sent her an email. She is out of town at a conference but advised us stop using the remedy (dd was to take 3 pellets once per week for a month). We will not give another dose until we see the homeopath again per her suggestion. I guess I'd be more willing to experience a "healing crisis" when school is out for the summer and there are fewer exposures to illness. This is a not a good time to mess with her system as she had been pretty much in "remission". I do want to support her body with the remedies but perhaps there is a better time of year to proceed. I truly appreciate your wisdom in this regard. Thank you for responding to my post!

Dd has been doing great. Very functional. Saw a homeopath to ensure proper immune system function so that we could proactively keep the immune system in check. Gave one dose of prescribed homeopathic remedy and now dd is suffering from restrictive eating, OCD, emotional lability...is this to be expected? Did we just screw up everything we've worked so hard to repair? I will call homeopath tomorrow but I thought perhaps someone here may have some insights. Thanks in advance for your expertise.

My dd was among the "unwashables". Improvement is slow post IVIg but it comes...the suggestion above about going somewhere with a swimming pool...it worked for my dd. She wouldn't bath or shower but a pool was perfectly acceptable...we chose salt water pools as chlorine can be an issue for my children.

I love when our kids can "label and define" the feelings associated with PANDAS. It helps us all "put it in perspective".

BCBS helped cover our dd's two IVIgs for encephalitis/encephalopathy with Dr K. The dilemma is that each insurance plan covers different types of medical care and treatment so what may be covered can vary widely even with the same insurance provider.