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Mary M

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Everything posted by Mary M

  1. 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.
  2. Bump--this event will take place tomorrow..all are welcome...PM me for details
  3. 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
  4. 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
  5. 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
  6. 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 order
  7. 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.
  8. 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
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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
  14. 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
  15. 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 con
  16. 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
  17. PANDAS/PANS/PITAND all accepted in the study. Any known or unknown etiology accepted. Mary
  18. 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.
  19. 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
  20. 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
  21. 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.
  22. 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.
  23. I love when our kids can "label and define" the feelings associated with PANDAS. It helps us all "put it in perspective".
  24. 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.
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