Kay

A good read, thanks for posting.

Bumping Just want to make sure everyone gets a chance to see this who may not have been on the board over the weekend.

Myself and one other Connecticut mom (so far) will be meeting in Clinton CT on Thursday, March 29th. If there is anyone in the area who would like to meet with us please PM me and I will let you know the time and place. A chance to get together to chat and share, nothing formal. Hope more can join us! I know there is at least one other Connecticut mom I have spoken too about getting together and I have deleted the message by accident, if you see this I hope you will join us. Kay

Found this link dated today on the Batavian facebook http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364

I sent you a PM

norcalmom, Good for you and your son! My daughter who was being treated with Augmentin 1000 xr was doing very well, most of the OCD along with other symptoms disappeared. She still had some lingering OCD though and it was not till we added Biaxin to the mix that the final OCD left. She never had any high strep titers or strep symptoms, but her mycoplasma IGG was high on the lab test. (different scale then yours but high) Her Igm was negative. I had written to that doctor you speak about with the gulf war syndrome he did say that Igg should be treated, he was careful not to say what I should do but that positive Igg and negative Igm he would treat. We had it tested only one other time the number had dropped a bit, but was still in the high range, she had been on augmentin but not the biaxin at that time if I remember correctly, we never did check it again. I think I had written some place in here about it when we were trying to figure out whether to treat or not. Hope the new antibiotics do if for your son! It really made all the difference for her! Kay

Sometimes it just helps to write it all down and then erase. Hope you feel better!

We found out about high igg mycoplasma in December of 2009. We did not treat this until September of 2010. No doctors at the time thought we needed to. We had only high IGG, IGM was normal. We treated with Biaxin for one month and it seemed to get rid of the last of the OCD issues. My daughter was being treated with augmentin (with great results)and remained on the augmentin while taking the Biaxin.

My mom and sister recently picked this free magazine up at a local heathfood store. Natural Nutmeg (Connecticut) Inside is an article on Pandas written by Gail Szakacs, MD and Nancy O'Hara, MD (I believe I have seen Nancy O'Hara on the doctors list, they are in Wilton CT.) Nothing really new in the article only thought maybe another resource for some who had not known of these doctors and to show that the information is getting out there. Here is the link to the magazine online, the article is on page 34 and 35. http://content.yudu.com/Library/A1teka/NaturalNutmegAugust2/resources/index.htm?referrerUrl=http%3A%2F%2Fwww.yudu.com%2Fitem%2Fdetails%2F382098%2FNatural-Nutmeg-August-2011<br /> Kay

What dose on the Augmentin, maybe someone else can help but I think sometimes it depends on the does. 875 worked for us in the beginning but later it did not help at all had to go to the 1000xr. Just a thought.

We used Biaxin (Clarithromycin)

What a great post! Have a wonderful night and congrats to DS14!

Can't believe I forgot to add husbands side of the family his dad was a type II diabetic also.

My sister has diabetes and it is a gray area (whether type I or II), wasn't found till she was 37 but they think possibly she may have had at a much earlier age. She is considered though now as Type II she is insulin resistant could only use oral meds for awhile before having to go to shots of insulin. I suppose it is possible that she was insulin resistant for quite awhile before she was dx with it and started taking meds. My grandfather was Type II diabetic. My daughter is Pandas/Pitand.

We found that not until my daughter was on the antibiotic for awhile was she able to look back and see how sick she was, and it didn't happen all at once. Still there are days we talk about things that happen and she can say she didn't know or feel that at the time etc. I think not till they start some sort of healing can they come to realize how much this has taken over their life. Wanted to add that she was 19 when we got the dx of Pandas so I don't even think age makes a difference until the healing begins.

I vote for this one: "I may just be a Google MD, but my PANDAS research is more up-to-date than yours is!"

bumping - just in case others in the area or anyone new to the board and lives in the area hasn't seen.

Myself and one other Connecticut mom will be meeting in Clinton CT on Thursday, March 17th. If there is anyone in the area who would like to meet with us please pm me and I will let you know the time and place. Just a chance to get together to chat and share, nothing formal. Hope more can join us! Kay

Worried Dad I feel your pain. So glad you got through it all. I too don't think the Crohns is coincidental. Thanks for giving Emmalily hope as it is always better coming from someone other then your parent!

I am Emmalily's mother and I believe now that I had Pandas too. Mine though seem to come in my early twenties. I know someplace under my content on this board is more detail so I won't go into that. History: My dad we think had RF when he was 16 My sister had a ton of throat infections when we were growing up, I never seemed to get sick that way. At around age 18 or so I had impetigo, and somewhere in my early twenties. I became sick for about 8 years with what I now know was severe separation anxiety, ocd (checking issues, and intrusive thoughts) and anxiety. I have had step since I have felt well and do not remember it bothering me other than the sore throat. I don't remember it having any effect on Emmalily at that time either, but she was young and she said she does remember from age 4 or so that she had some ocd issues but they did not prevent her from anything always thought they were just quirks. So hard to tell if my strep may have bothered her. I feel well, I did struggle for 8 years, was well for three before becoming pregnant with Emmalily had a great pregnancy and small set back after her birth, but nothing like the first time around. Now I only see glimpses of it when I don't eat well, I clean up my diet and that seems to get me back on track. Nothing too heavy. I don't notice it when I am sick at all that I can remember.

Happy dancing here for you!!!

When I was nursing my daughter and had to have my gum disease treated they did test the bacteria to see what it was and what antibiotic would kill it and not harm her (so they say)

Here's another Staph story. Daughter had been feeling good (no previous problems that we knew of) went away to a summer program 4 days after being there was a mess. Called to come home couldn't stay, GI symptoms etc. This was well before we knew about Pandas. Once we learned what had been happening all these years, looking back she told me the girl she had been hanging out with for the past 4 days was recovering from a staph infection. Daughter seemed to rebound after that the whole summer was good and was then exposed that winter to strep that caused us the most problems.

Daughter 19 soon to be 20 dx with Pandas December 2009. Large exacerbation at 17 one that made us stand up and take notice. In researching since then we have found that she probably had issues much younger, but nothing that interfered with her life at all and did not really kick in until exposure to strep at 17. High Mycoplasma Pneumonia titer Igg. No high strep titers. Cunningham test camK 174 Also was ill after a vaccination at an early age. We are not sure where this all began can only guess. Treatment so far has been abx. Lower dose Augmentin in the beginning also tried Omnicef. Both worked well, first dose of Augmentin really cleared a lot for her. Now on Augmentin 1000xr and also just finished 28 days of Biaxin for the Myco P.

Just wanted to add our experience, my daughter who is now 19 but was 17 when she became ill. It was after exposure to strep, about 3 or 4 weeks later she fell ill with severe separation anxiety among other things. We did not get a dx or start treatment until she was 19, this past December. We do feel now also that with all the history we have had to give that she did have some tendencies way back around the age of 5 but nothing that she experienced throughout that time 5 –17 kept her from living her life, so her biggest exacerbation was at 17. We have been treating with antibiotics since December. She continues to improve. She did not show high strep titers but did have high mycoplasma pneumoniae Igg. She has been on augmetin different strengths and also omnicef. All were helpful for her, the first augmentin she said was like she just woke up finally. She is currently on augmentin xr 1000 2 x day along with 28 days of Biaxin, she will discontinue the Biaxin once the 28 days are up and remain on augmentin for now. She has also seen improvement since adding in the Biaxin. It really seems to be individual at what works for who. So far we have not done IVIG or steroids. Hoping that the antibiotics will do it for us. The other thing I will mention and dcmom mentioned this, time really seems to be a factor. My daughter has not been in school for the last 4 years. After the strep exposure which was in January, by April she was out of school, rested that spring and summer and attempted senior year for a couple of weeks before getting a cold and everything came back and made it hard for her to be in school, she did school from home online. Again in the fall ready for college and had a vaccination and seemed to spiral again, took medical leave and this year we just decided to postpone this year as she seems to be doing pretty good and really want her to heal. Please note she did not have dx or treatment until after taking medical leave last fall...so all her attempts were while she was untreated. Just our experience, hope you can pull something from here to help your daughter.