pathfinder

Google prednisone and you will fine easily broken bone as one of the main side effect.

Wilma 1) She needs Saccharomyces Boulardii along with reg probiotics. 2) not enough Azith or try augmentin ? 3) Nystatin should not be used at same time as charcoal. (too much charcoal) 4) Having said that, Your ds's behavior sounds like yeast problem. I would definitely try different yeast med. 5) Did you have your ds tested for Mycoplasma P,?

1) probiotics and more probiotics. We are doing Align( probiotics) from costco and sacchaaomyces boulaadii+mos from Jarrow. probiotics really helped with yeast bebavior (mean and arouse in a bad way at night or acting drunk) 2) I don't know but every single book I read and every single person I came to contact with is using fish oil ( omega 3) so we do fish oil as an insurance. ( if it does not help at least it does not harm) 3) Nystatin did not work for my son for some reason but Diflucan did so you may want to look for other yeast med if Nystatin did not deliver ( after certain time table) Diflucan made a huge difference in my son's yeast behavior( you may need something that will help yeast problem natural way but I will leave that with someone who is more experience in that area) 4) My son who is 17 and 170pounds is doing 1mg melatonin. we started with 3mg but we found that 1mg was enough. You may want to play with melatonin dose as more is not always better. 5) same thing with seroquel. I am not familiar with this med but again pandas kids do better in a low dose or no med( as per my own research and own experience) Drs tend to prescribe high dose of med to see the result asap but I(my son) had many many bad experience with high dose meds ( since I did not know better I did not question drs and that was a huge mistake. If one needed to use meds, one might as well use it effectively so I am not arguing about med being high dose)but pure and simple effectiveness of dosage prescribed by doctors as one size fits all.

My dh asked yesterday what I wanted for Christmas and this is what I said to him. I don't have any because I don't want God to be mad at me for being too greedy. I used to think life was so unfair as I watched my once beautiful son turning into an OCD monster who was lock into his own miserable world. I desperately seek for help but it would always be like one step forward and 2 steps backward, in fact he was getting worse as he grew older. We had to suffer watching all his young childhood friends going out to parties or taking AP exams or something productive or fun while our own once perfect son suffering because he could not let go of such a insignificant things in life. But everything changed when we have started pandas treatment. It was like something had lifted out of his brain and his OCD began to subside and finally almost stopped for last 5months. For some unknown reasons, my son was able to pull his peer groups math( pre calculus and trigonometry) and age group English in between his OCDing and so with decent SAT score and B average grade he is bound to college comes next Sept. But even with SAT and all that, college would not have been an option for us if he continued with OCDing. IVIG and antibiotics made that all possible for us. My fear of going back to old way is beginning disappearing everyday as well. What more can I ask? except praying that tomorrow is just like today.

Melanie Are you doing HD or LD IVIG ?

I agree with LLM. Even if he did not mean what he said, he clearly doesn't want to be alone and in itself is like crying for help. Manipulation or not, 13 is still very young age which validates his needs to be around someone.

Joan I am so sorry that your family is going through rough time. I agree with momto2pandas regarding mid teen years being worst time for pandas person. I don't know your religious background but I would also look into church school options. There are small schools (usually K-12 all mixed in) located right in the churches. google Christian schools in your area and they have home schooling options as well. The reasons I recommend these type of schools for pandas kids are 1)good portion of kids in small Christian school are drug free and nice 2) their curriculum is easy and personalized so kids always have chance to catch up with them in later yrs. ( but very limited and out dated) 3)you could choose home schooling option through these schools-- once again they are very easy (except bible) and don't tax pandas child's already suffering brain. 4) they empathize on moral and behavior stuff that pandas kids can really benefit from. 5)they are inexpensive There are many cons as well but I believe pros out weight them ( IMO) I put my son through many many schools last 12 yrs ( montessori, private school, military school, public school, boarding school ) and I found small Christian schools(his high school yrs) to be most flexible that provided understanding and compassion we so needed. The best part of all is that my son was given chances to make up for the grade ( He had so many ups and downs as most pandas kids do) And now my son has applied to 7 of 4yrs college and he stands very good chance of getting admitted to most of them . ( one more SAT test to tackle) This could not have been possible if my son went to public school. Think about it cyber hug from Diamond Bar

What state do you live?

My ds17 could not do multi-B vitamins. They gave him upset stomach. 5HTP made him agitated and made his OCD worse sometimes.

I am also kicking myself for not doing IVIG years ago. It made all the differences in my son's life.

Your best bet would be pursuing pandas/pit pathway. IMHO you could always go back to other conventional treatment but pandas have age limitation ( so I was told by very reputable pandas Dr) I see some of my son (9yrs of pandas) in your dd. My ds17 symptoms changed from one to another over the years which made me think at one time and another he had ADHD then Aspergers, bipolar, or TS but one thing and main thing he always had was OCD tendency. His brain got stuck and he suffered. We went through so many different combinations of medications but they did not work for us. Antibiotics and IVIG made a huge differences in my son's life. best wishes.

Just a thought but several days ago there was a post regarding urinary frequency topic. Somehow I cannot copy the link but it was last posted on Dec 1st by EAMom under Urinary Frequency There was a post by Erin3 Posted 24 November 2010 - 02:07 PM This was one of my son's issues before we even suspected PANDAS. Our urologist did a flow test and his internal sphincter muscle would not relax enough to empty the bladder. They ended up putting him on believe it or not, prostate medicine, which helped a lot. His was truly a physical symptom, not an OCD symptom. I don't know if there are natural ways to help relax the muscle. Maybe take her to a urologist to rule out any physical symptoms first? I have a son 17 who has urinary frequency problem so I took Erin3's post to my heart. Maybe you want to look into this as well along with other things???

I remember crying and praying as I was reading your posts. I too went through very very rough time with my ds(then 16) when you were going through one with yours. I am so very happy that your family is doing well and wish your family the best.

There is a yahoo group who believes Valtrex is helping their children ( Like we believe in antibiotics) These children are mainly Autism related but as pandas has similarity with some autism trait, it might be worthy looking into it. My ds had been on Valtrex for 3 months before we changed our course to antibiotics.

sounds just like my son except mine had high aso titer as well as high myco. p titer. My son also had some problem with toes. (could not run) He had MP for a couple of years at least ( he had been complaining about toes and that was the deciding factor for me as MP was never mentioned by any Dr I knew before this yr including 3 of my MD siblings) as if these were not enough problems, my son also has allergies to practically everything---food, trees, weeds, animals, god knows what else--, and of course gut problems. MP is something you cannot overlook if your son had shown those symptoms. For most it maybe walking pneumonia but for my son it was turning him into an alien.

My ds had an episode last winter that was caused by Mycoplasmas P. I know now strep was the cause of OCD He has had it since 8yrs old) but Mycoplasmas was something different. My son went crazy ( not like annoying OCD) with rage, swearing, and anxiety along with physical symptoms. ( headaches, respiratory illness) It was one of the most single scariest times of our lives. I would definitely go after it. IMHO Myco is even more scarier than strep. AND yes Myco P can most definitely can be epicenter of pan/pit.

My heart goes out to you too. I will pray for your son and your family tonight. One of the best thing I ever did for my son was finding this place and getting help from other pandas parents. It really changed course of our family's lives. My son is 17 yrs old and has had pandas for 9 yrs. Needless to say that my family have gone through a living ###### past 9yrs but I never gave up believing that there is a cure/treatment for my son. I could only imagine how scare and helpless you must feel but I want you to know that you are not alone.

Thank you all for your kind and caring inputs. I will take all of your advices with open heart and undying gratitudes. Two of you pandas girls who dropped by, pandas or not I think you girls are incredibly bright and caring. I know I would have been very proud if I were your mom. Raising a pandas child is like walking through a dark alley blind folded, so many unanswered questions, so many uncertainties, and so many obstacles. Thank you guys

I hope you pandas parents are having a good thanksgiving holidays. I am posting this to parents with older kids as I don't want to scare parents with young pandas. My ds17's main issue had been OCD that involved with constantly reassuring if everything was OK and he made us say sorry a million time for something so insignificant ( he could not let go) and he would find plenty of thing that bothered him ( some days I had to apologize million times for laughing because he thought I spited at him) As you can guess it was down right annoying and physically and emotionally draining to be around him. If his mom was feeling this way about him, it was no wonder that he did not have any close friends. He and his family(us) were very very hurt and sad about the rejections he used to get. It was one of the most painful issues my son had to face through out his teenage years. After 4 IVIG + Augmentin for last 6months, he no long has that annoying kind of OCD. ( once in a while he demands that I apologize for touching his books in a wrong way but it would be only for a few times and lets go in no time.) Now he has several friends and had very busy social life. In theory, I should be very happy but in reality I am very scared as I am facing a new problems. This may be all in my head but I am worried all the same. Here are my reasons for it. Even though my son has never been behind academically, because of his brain getting stuck on wrong issues he missed out a lot of normal growing up therefore making him very naive and impressive for his age. I know the boys he hags out with and they are nice kids(?) but my worries are that they are smokers and how is that going to influence my son? Do they do anything more than smoking as if smoking is not bad enough? I realized that I have been treating my 17 yrs old son as he was 7 yrs old but I hope as pandas parents you guys would understand why I am worrying about this. I just don't have confidence in my son to make the right choices. ( based on his attraction to dark movies and music and my son says they are just movies and musics but still) When would my worries over? Am I over reacting? What would you do?

My ds17 had urinary frequencies ( I am pretty sure they are not OCD but physical )after each IVIG. He would have urgency for about 2-or 3 weeks and then he goes back to himself. In MHO it is one of the side effect my son gets with IVIG, the other one being extreme fatigue.

My ds 17 takes augmentin XL 1000X2 a day. I have no idea if this form of augmentin is better than the other but regarding insurance claim my son gets angmentin XL every 15 days (30 pills) instead of every month. I pay $30x2 a month. I would go talk to your pharmacy to see if there is a way to cut cost and I would also call insurance company to ask why XL is much more expensive. They may want some documentation from your dr why it has to be XL ( which your dr and you could effectively argue as you already tried regular form.

SearchingMom Did you look into buster's new flow chart? I think he added Mycoplasma P as necessary (recommended?) blood test along with strep and I think that is something you might want to look into. Mycoplasmas P caused very bad headaches for my son and ibuprofen did not help him. (nothing did) I see a lot of my son's younger version in your son and I could tell you that I feel your pain as if it were my own. I will pray for your family and your son's recovery. pathfinder

Priscilla I am so very happy to hear your dd is doing well. It seems like only yesterday when I emailed you for Dr. Lin We both came a long way since then. My son also is doing really really well after 2nd HD IVIG. Life is good here in Southern California.( at least in Prschilla and Michelle's house holds) Cheers!!!!

I don't think pandas should be factored in to this incident of hiccup girl based on my experience with my 17 yrs old son. My son had been attracted to dark movies and musics for last 2 yrs which made us very very worried for something like this kind of incident. I know there are regular/normal teens who like scary movies but I am not going fool anybody by saying it goes same for pandas teen. I would like to point out differences between pandas kid's anger and wrong doing from that of other kids. Of course this is only my opinion from my own experience with my teen son and I don't claim to be anyone who knows anything about pandas. Again this is only my opinion. Pandas kids could become angry or become violent at something that would make anybody angry ( if anything happens under these circumstances one cannot blame pandas for outcome) but what makes pandas anger/behavior different from regular kids anger is that it comes at unexpected moments with wrong reasons. Most of times my son's unreasonable anger/behavior is related to his OCD. ( example=someone touched his arm with dirty hands not because he wanted to rub someone but did not go as planned) His anger or unreasonable behavior( murder in hiccup girls case) always comes from something he cannot help like second instinct/OCD and it is never planned. Pandas kids might threaten or display extreme violence towards others but they are alway from something totally irrelevant. As I said he plots and plans wrong doings ( lied to me that he was going to nature photo taking when he was planning to catch snakes or spiders last week) but something as extreme as murder could only come from OCD related thinking not profit taking however small amount. Pandas probably affected this girl's personality and self confidence but murder act in it self cannot be blamed directly on pandas. ( any given things could effect personality and confidence) My son is doing very well with pandas treatment and my heart goes out to those teens and adults who missed chance of pandas treatment and went on to wrong places in life. Pandas is an illness that manifests differently for every kids so anything is possible and therefore above is only my humble opinion. thank you for reading.

When my son first had OCD exacerbation at around age 8, he had severe tic ( blinking eyes, nodding his heads, and vocal humming in that order) but that went away in couple of weeks and never to be seen again for next 8 yrs, hence us missing chance to catch pandas until beginning of this year. He hums sometimes in a very low tone that only I ( mom) notice and he does it very very rarely. Over all he did not have tic for majority of 8 yrs of his illness and if one were to asked me about tic, let's say 3 yrs ago, I would have said my son did not have it and he definitely, absolutely is a pandas+ pit kid. I strongly advise you not to disregard pandas possibility for your child because of tic being absent.