MassMom1414

It is on the front page of Boston.com right now hopefully it stays there for a bit so more prople can see it!

I know that a few people have talked about coconut oil helping as a supplement saw this and thought maybe it could help? I know the article doesn't say that anything is proven but if it could get him to brush it could be better than not brushing at all. Neither of my kids will use anything to strongly flavored we have found success with the Toms of Maine strawberry. We have also used some of that yucky tasting stuff on my daughters nails to keep them out of her mouth and it seems to ave worked. http://www.boston.com/lifestyle/health/2012/09/04/coconut-oil-could-battle-tooth-decay/CG0NUJmQvNOgWzuvRi4IMO/story.html

Never heard of this brand but since so many people use them right thought I would share more info at the link below possible samonella contamination lot #'s and such can be found at this link http://www.fda.gov/Safety/Recalls/ucm311050.htm?source=govdelivery#.T_yyiFglVsp.facebook if the link doesn't work just go to fda.gov

Hi, My daughter and I are both allergic to Penicillin and have both successfully taken cephalexin with no allergic reactions. My daughter did have some stomach pains that we think may have been due to the dosage and length of time she was on it.

This came in our weekly school communication today from our guidance counselor, thought I would pass it along. I don't know much about NAMIMASS I know there are a few folks on here from Massachusetts so maybe someone else has had some experience with them. I know a lot of parents are looking for help understanding how they can help their children. If you go to their website it looks like there are other meeting dates and locations besides the one listed below. NAMI – “BASICS” EDUCATION PROGRAM Free for parent/caregivers of children living with mental health issues and behavioral challenges Attention Deficit Disorder and ADHD Depression and Obsessive Compulsive Disorder Conduct Disorder, Anxiety Disorder, Bipolar Disorder Oppositional Defiant Disorder and Childhood Schizophrenia The National Alliance on Mental Illness is offering a FREE 6 week class specially designed for parents/caregivers of children whose challenges were identified before the age of 13. The program will help families cope with the impact these disorders have on their child and the entire family. The course is peer lead, meaning that trained teachers are themselves parents/caregivers of children living with these disorders. The structure creates an intimacy that few programs possess and subsequently, a program now whose capacities are unparalleled. Biology, treatment protocols, problem solving, listening and communication skills, medical record keeping , methods of working with school and health systems, self care. We think you will be pleased with how much assistance the program offers. We invite you to call for more information. Classes start Tuesday, February 7th 7:00PM – 9:30 PM Concord, MA Co-Teachers Dee 978-697-3441 deefebba@comcast.net Angela 978-618-7521 angela@samuelthomas.com Registration required Classes limited to 22 persons Call early to reserve a spot! This NAMI BASICS Education Program is sponsored by NAMI Massachusetts and funded by MA Department of Mental Health www.namimass.org

Hello! I am happy to see your message and can't wait to hear other memebers thoughts on this. I have been asking myself the same question over the past few weeks. We have a very similar story except for the olive leaf extract part. She has been about 90% better with very minor symptoms for about 5 few months now. We are also about to have some food allergy testing done which could explain the minor symptoms she is having. So now I wonder the same maybe it is not PANDAS? I am happy to hear that your daughter is doing well. Also in a funny coincidence my daughters name is Hailey .

My 6 year old was recently dignosed with PANDAS and the fears that you are talking about were one of her biggest OCD type symptoms She also had the need to confess things she felt guilty about even if they had happened months prior to her telling me but that wasn't as severe. She went through 2-3 months of different fears it actually started with sparkles on her clothing she wouldn't wear or use anything with any type of glitter on it for fear it woud get in her body and make her sick. She also has had similar fears with gas and oil (at the same time) cleaners and chemicals, dirt and germs. She would insist that these things would get in her body and hurt her, we would tell her but they wont she would reply but what if they did (this was with all but the sparkles because that could happen but we deemed them safe to stop the breakdowns) the round and round questioning could go on for ever because she couldn't accept the answer that it wouldn't happen. We worked with her on thinking before she asked about the fear if she could stop and take a breath and then ask herself if what she was thinking about was really something to worry about if if it was something that would really happen or if it did would it really hurt her. Trying to reassure her that there was no way that gas and oil would not appear out of nowhere and get in her body. Being 6 this was really difficult for her but we tried realy hard to help her to switch he thought to something else that she liked to do like drawing or riding her bike just for long enough to stop the bad thought. We would ask her why she was afraid of these things happening and she would often say she doesn't know,she just is. Because we are still learning about PANDAS and have just recently recieved the diagnosis we havn't done any medication besides antibiotics when she had strep early on but she has been going to counseling weekly for a couple of months now. the mojority of those fears have gone away occasionaly they will come back in minor forms of the same thing when she isn't feeling well or is stresed. Her fears started the beginning of April and they have been minor since the end of June we did see them ramp up again just before school ended we think because of the numerous cases of strep in her class and throughout her school. Not sure if this helps at all.

We have been working with our pediatrician for a couple of months now and are realizing that he may not be the best fit for our situation. He is aware of PANDAS but hasn't ever treated a patient with it. His reccomendation is treat the strep when it happens and all symptoms will go away. Has anyone found a doc that is a bit more knowledgeable in the state? As for other doctors ( neurology etc.) I am having a hard time fidning someone that takes new patients that has been reccomeneded by other PANDAS families. Thanks for any help you can give.

I am thinking I need to study up a bit on OCD I am realizing that a lot of what she experiences falls into that category. It is really interesting that the thoughts are so specific and in your case my daughter has the same things she talks about peoples spit getting on her all the time. She has been going to therapy for anxiety but I am thinking we may need to be more OCD focused since those are the symptoms that seem to be hanging around the most.

We think this is one of our DD's PANDAS symptoms but I haven't really seem it talked about much. Our daughter seems to have these phantom like feelings that things have touched or happend that really haven't. For example just had to put ear drops in her ear due to swimmers ear. every time we do it she freaks out and screams that it went in her eye and her mouth even though it didn't and it is no where near there. She does it sometimes too about people or things touching her when they aren't really close enough to. Just curious.

sorry hit the button before I was ready. everyones replies have been so helpful even prior to posting I would read, it made me feel so much better about what we were experiencing. Today has been a good day we even managed a dinner out to celebrate the end of school tomorrow the best part, no hysterical breakdown when I sat next to my 3 year old instead of my DD. There have been so many meals where I didn't get to sit with him because of the reaction of my DD tonight he asked me to sit with him and I said yes expecting the usual reaction and there was nothing except that half way through the meal she said "mommy it's okay that your aren't sitting with me" I almost cried. I know that this has been harder on her than it has been on the rest of us I can see it in her eyes when she feels better and does normal things like hug her best friend ( instead of ask her not come in her room because she is afraid she is going to go to th bathroom in her bed- luckily we have very good friends who have been so understanding of some of the weird things she has said) I know that the happy go lucky girl we used to have is in there working hard to come back 100% but it is nice to enjoy the little victories she has. So we got her culture back from this weekend and it was negative, we have a follow up with the pediatrican next week once he hears from the neurologist. They did not do any blookwork at all just the follow my finger push my arm type of things I was actualy really disapointed I figured Boston Childrens hospital we would have a fabulous experience but I kind of left knowing what I had felt all along but not knowing what to do with it. I am still researching other doctors in the area but I am finding it very hard to get an appointment with anyone that actually refrences PANDAS in their info. We will see how much our Ped is willing to work with us next week. The sleep remedy ideas are wonderful that is the one thing we have not been able to fix she often lays in bed till 10-11 at night unable to fall asleep either due to fears nightmares or just restlessness. This isn't easy for a kindergartener to .handle We play the same cd for her every night to help he try and sleep and not have bad dreams she has hung 2 dreamcatchers above her bedand is sad that they don't work and her awful volcano coming out from under our house dream keeps happening. Sorry I am a bit longwinded sometimes. I will keep reading and update if we have any progress to report. Thanks!

Thanks for the reply she had a positive strep swab on March 26 then a negative swab on April 12th but a positive culture from that swab on the 15th of April. SHe then had a negative swab and culture end of April begininng of May that the doctor filling in for our regular one did to prove to me that it was not PANDAS related but just OCD and Anxiety. I just took her 2 days ago for a swab due to complaints of a sore throat and the knowledge that 6 kids in her classroom have had strep over the past 2 weeks and we have seen an increase in her behavioral symptoms. She has not had her strep titers done or been tested for the other triggers you mentioned. We are stll early in the diagnosing period so I will mention those to our ped when we see him next. SHe is currently seeing a LMHC that specializes in Anxiety in children but we are thinking that we may need somone a bit more knowledgeable in OCD too.We have been give some things to work on at home but with school I think that my dauhter has a hard time remembering to think about her thoughts when she is at school. I will definitly check out the link. Thanks for your help

Hello, After 3 months of pushing to get our pediatrician to listen to me we finally hav a dignosis of PANDAS for our DD6 I was convinced this is what she had in April). she has been on a 5 day zpack back at the end of March and then a 10 day of Ceflex the 2nd week of April. We had a negative rapid and culture for strep at the end of April. While many of her symptoms have gotten better - she has severe separation anxiety,nightmares,fears of things like gas, oil, paint, cleaner and sparkles getting in her body, she could no longer sit still and complained that her legs hurt. She would think that things or people had touched her when they hadn't or that someting would be on her skin that wasn't there. She became afraid of our family dying, especially me.She complains that her hands feel sticky all the time and that her stomach hurts. She is doing better but can still have some of these things ( as well as others I haven't metioned) happen but in a less severe volume. We have been taking her to counselling for about 6 weeks for the anxiety and ocd that she was originally dignosed with but we haven't seen much progress with that we are hoping the summer off will help her/us work on her coping skills. We met with a neurologist last week and they dignosed PANDAS but gave us no real plan of action our Ped is waiting on their summary of the appointment before he moves forward with any treatment. I took my DD for a strep test this weekend because it is in her classroom again and she has had some symptoms but the rapid came back negative. After all of that I guess the things I am wondering are Does she need to be on anibiotics even though she doesn't seem to have strep does it help with smptoms? Is it normal for her to still be experiencing the things at some level if she doesn't have strep and it is PANDAS? What else should we be doing to help her feel better? Should we be seeing help from the counselling? should we be looking for someone else? Not sure how long it takes to see a result Thanks for any help you can give I do read through the boards when I can and reading what everyone else has to say hea helped me feel better about what she has been going through.