Missmom

Hate to sound skeptical, but wonder who they are planning on having speak on behalf of pandas. Just by the way it is phrased as a pandas "hypothesis" scares me. It did not show a list of keynote speakers. If anyone hears any more on this please post.

Can you get steroids? If the ivig worked initially then steroids may calm him down at least temporarily. Good luck.

Me too, the flagyl is rough stuff. I go back to the dr. Thursday for a retest. It is certantly worth a simple stool test to find out.

Yes, I was just diagnosed with c diff myself after a colon scope and stool sample came back positive for c diff. I was not having a lot of diarreah but more like irritable bowel symptoms. I never would have guessed c diff. Now taking flagyl to try clear it up.

Do you mean 2000 mg. daily? If so then many here have been on that dose without any issues, but always check with your doctor.

Sac. B is in florestor, culturelle has lactobacillus gg.. Either of those are good.

Also streptococcus thermophilus has started being called by another name in some probiotics as well, I just can't recall the article where it discusses this. Maybe someone else can chime in.

I PM'd you.

I am so thankful to all of you for sharing your vast amount of knowledge and expertise. There have been desperate times when this was the only place to turn. As I sit here this Christmas, I am just thinking about all of you and praying for a great year ahead. I am still a regular on this forum and I will probably be around for a while, but I promise to you one day when my son is 100% I will share my story of success, and offer as much advice as I can to those still struggling. Thank you to those of you who still check in and post updates even though your children are well on their way. It is encouraging to all of us. Take care and merry Christmas.

Why is he in the bathroom? Is he nauseous? Or is it his OCD? Did he sleep at all? First I would try Motrin full dose 4x a day. Just until you can get on phone and get more abx. So sorry you are dealing with this on Christmas.

Hi philamom, Have you had any issues with c diff, or is this just what you are doing to prevent gut issues? My dd11 had c-diff three times. First time at age 5 she was treated with Flagyl. Eight months later it returned or she got a new infection. She was then treated with Vanomycin. Three years ago she got another infection that was treated with Flagyl. I then started her on high dose probiotics and haven't had any problems since (with clostridia anyhow) - knock on wood. Hi philamom, I was just told after a colonoscopy I had c diff and am on flagyl. I read all the info and panicked. Here I have a son on abx for months and now he is susceptible to all do this. I have asked him about his bowel movements lately and he said they have been pretty soft. I don't know as he is 12 and I don't see what he does in the bathroom. I am worried he may be exposed to it and highly susceptible. I have been keeping up the probiotics but don't want to add too much too soon and have that cause upset stomach as well. Is your daughter on any abx at this time? I hope this all gets better soon. This flagyl is rough, it is making me feel nauseous all the time.

Hi philamom, Have you had any issues with c diff, or is this just what you are doing to prevent gut issues?

Thank you for coming back and updating all of us. So happy to hear your report. I wish more people would come back with their success stories. As you know it gives us all hope. Wishing you the best Christmas yet.

It is scary to give a pandas kid Tamiflu, because it lists as possible side effects in children neurological issues. That said, my son got the flu this year and was given Tamiflu right away. I immediately called his neurologist to ask her about giving it and she said definitely. I am glad I did. He was better in a day and did much better than my daughter (non pandas) who refused to go to the dr.

Here is the background info. I have always had irritable bowel type symptoms and this past week had a colonoscopy just to check it all out. I was worried because several of the symptoms of ibs mimic those of other serious diseases such as colon cancer, etc..... So after the colon scope, dr says all went ok but that he has run stool tests etc. So, I get a call today saying i am positive for c diff. I have not been in the hospital or had any antibiotics in quite a long time and other than stress have been feeling ok. I have had some mild stomach upset, but just really thought it was stress related. He started me on 14 days of flagyl, but now I have been reading about how extremely contagious and dangerous this is. I don't have any idea how I could have gotten this because I am somewhat of a germ-a-phone, or how long I have been positive for it. I am now worried about my ds12. He has been on augmentin now for about six months and I have been giving him one culturelle a day as well. I just don't want him to get this. Do any of you know any more about how I can protect him from this. As I understand it is extremely hard to get rid of. I will probably have a bleach party in my house tomorrow, but again just don't know if I have already transmitted anything. Thanks for any advice.

Have you had a full panel of bloodwork done. That fever could have been anything, but maybe if you get the titers run on strep, myco, etc.... You might find some answers. My son tested positive for flu in oct, and the urgent care prescribed Tamiflu. I was also nervous about the possible neuro side effects, so I immediately called our neurologist and she said to go ahead with it. She said if he would have a reaction to it then I would know pretty quickly and just stop. She said side effects would be short lived.

Thanks for your input. Our pandas doc. who is treating my son is a pediatric neurologist. She believes and has been the only person we have been able to find to help us. She is about two hours away, so I will have to call and try get an appt. thanks.

My ds12 Pandas has been doing pretty well lately. I would say he is about 90-95% on any given day. He is doing well at school and handwriting has greatly improved. The only medication he is taking is augmentin 500mg/2x per day. I realize this is a lower dose in the pandas world, but it seems to be helping him so I don't want to increase it if I don't have to. He has been taking this dose since July. He is also taking a probiotic once daily. That is all. I have noticed a slight shaking of his hands lately as he is holding his pencil or fork, etc.... He was at McDonald's the other day and the employee behind the counter asked him why he was shaking when he handed her some money. I seem to remember reading about Sammy (saving Sammy) shaking. If i remember correctly, the doctor was concerned, but if I recall that was a result of an SSRI. Should I worry about this? Anyone else noticed this? Could it be a tic? I cant imagine what else could be causing this as he is not on any other medications. Our next doctors appt. is not till May. Don't want to go to the hassle of traveling to the clinic if it is not necessary. Any thoughts are appreciated.

Yes, there was a huge thread on here a few months ago you should either search the site, or go to google and search camels milk ACN. Sometimes this search engine does not work really well for me and I have to go through google. It is worth reading everyone's comments if you have not already.

I agree, go to the doctor. Have you tried steroids? Sometimes steroids help with weight gain. 70ish pounds is definitely too thin for a 12 1/2 yo boy. My son is the same age and about 5'2". And he is around 110 lbs. Boys at that age should be in the pattern of gaining weight, then spurting up, etc.... I agree with the suggestions of just leaving food out and available all day. Pack extra snacks in his lunch. Lots of variety. Just stay away from the emergency room, and call a doctor who knows you that you can trust. Good luck.

Hi sosudden, I just want to say that if it were not for moms like you, I would not have a clue what happened to my son. About a week after my sons second episode, I happened to pick up a local newspaper ( which I never have time to do ) and started reading an article written by another pandas mom about pandas.... It was my ah-ha.... moment! I realized based on her description of her son, I could have written that article myself. The problem was, by the time I read the article my son had taken biaxin for a strep infection and had gone into almost complete remission except with a little bit of lingering OCD. I went to several doctors at that time with the article in hand and told them about it, they all looked at me like I was crazy.... So I folded the article and kept it in my wallet for two years. That was when the next more severe episode hit... This time I was armed for battle. I insisted on strep tests, bloodwork, etc... Until I finally got someone to hear me. My point is that if you have been given the gift of being a good writer and dont mind telling your story, you will probably be helping countless people like myself and my son. I don't know how to get in touch with the mom who wrote that article to our local paper, back in June of 2010, but if I could I would buy her lunch and thank her immensely. Also, in return, I will thank all of you who have shared your stories in every way possible. We are all creating awareness in our own little way. Thanks Linda

We use vistaril for anxiety. It is a antihistamine that has to be prescribed, but it is non-addictive, and has been proven over time to reduce anxiety.

You are a good writer, and you should consider writing that book. I can't wait to read the rest of your story......

I asked our ped. Neurologist about once a day Motrin and she said that was fine long term. I have since stopped giving it once a day, but just wanted to let you know that I did specifically mention to her that at our last visit. I am sure others will chime in though.

Sorry to sound ignorant, but what is mb 12?