MomtoJake

My son's PANDAS doc said nosebleeds can be due to strep or other bacteria colonized in the nose. His turned out to be MRSA. He is having nosebleeds again so we are going to the pediatrician to have swabs done again. He is having one every other day, sometimes multiple times. Am going to look into the sups that llm mentioned!!

There are some snps on SNPedia. For some reason I can't post the link but if you search Mannose Binding Lectin Deficiency a few snps come up. We did 23 and me and not all of these snps come up.

My son (who also has PANDAS) has a severe/profound MBL deficiency (he has almost none) that was discovered during an immunological workup. The immunologist said that usually the immune system compensates by the age of 5 for this in terms of fighting infection. However I have discovered in my own research that people with profound deficiencies often have co-occuring auto-immune issues or other immune issues: http://www.jacionline.org/article/S0091-6749%2811%2902317-7/fulltext Also here is an article that warns that there should be caution despite the fact that most research shows that M

Hello and sorry that you are in this "club". Just a thought on the thyroid numbers. I know several PANDAS/PANS families that have found out their kids (who has out of whack thyroid numbers) have Hashimotos Encephelitis (differerent from Hash. Thyroiditis) They are being treated at Duke Autoimmine Encephalitis program. You might want to explore that.

Hello, if you are located anywhere near Valdosta, GA there is a doctor who does believe in PANDAS if that helps. I was visiting family there and my PANDAS DS got sick and I took him to Dr. Jonathan Parrot (Info below). My DS was his first PANDAS kid and he ran a strep test for me and kept me there an hour asking questions about PANDAS. He has diagnosed and maybe treated a Syndeham Chorea patient before. So while not a Pandas doc, perhaps he would be a resource for you in the area. And he may know other PANDAS friendly docs in the area. BTW I grew up in Jasper FL, where are you in NFL/ GA? PM m

My pans ds developed and eye widening tic after dilation. It did go away after about a week.

Glad he is walking again! Regarding the Omnicef- when my son was 2 he was on Omnicef for an ear infection. He stopped walking. It turns out that the Omnicef had depleted most of his Carnitine-necessary in the production of energy in the mitochondria- Doc said he probably already had low Carnitine and this bottomed it out. I would have his Carnitine levels checked. May need supplementation.

My DS has a very severe dust mite allergy- the worst the allergest had seen. We sanitized, covered everything with appropriate covers and wash frequently. Also, he is on zyrtec. We have only done the Zyrtec, but it did give us many months of PANS symptoms relief until DS got Myco P. Worth looking into IMHO. Don't forget the to cover the pillows or buy dust mite proof ones and sanitize blankets and sheets frequently.

I second momoftwinsplus1 please contact NIMH again. Swedo said that it would not be study dependent. Even if you were turned down before, please call. This will not be a part of that study. She was very specific about life threatening cases.

Maria Mako-- I received you PM but I am also replying here just to make sure you see it. Everyone's journey is different but here is a little of mine that hopefully might give you some insight" What I have learned during this last 18 mos with my son is that he flares with mainly the following issues: (His initial trigger was Strep/Scarlet fever) 1. Allergic reactions-- he has a lot of allergies and when pollen etc is bad his meds don't cut it. 2. Viruses colds etc-- ANY illness causes a flare a mild cold, a stomach virus etc. 3. Exposure to someone else with strep 4. Strep 5. M

Also wanted to say that we use Magnesium Oxide and Ibuprofen during flares and that helps tremendously. When he is not in a flare there is no hyperactivity.

Yes, we do see these exact behaviors during exacerbations. My DS started school, 1st grade this year with a Myco P infection so he was really off. Once I got the teacher educated on his 504 and helped her to understand that putting him on red did nothing to help him things got better. We developed some visuals on his desk that she could point to to get him to calm without calling him out in front of the other children. Also she allowed him to stand to do his work and move around some if he needed to. She also had a loudness visual to let the whole class know whether they should have No talking

Yes!! I was just commenting this on a Facebook group- However I did use the word "Idiot" vs "A$$" !! Either one or both works. If they had to quote him at least they used one that succinctly tells the story of who he is.

Sorry you are going through this, we had this issue as well! It sounds like to me that you son is having intrusive thoughts and that he is telling you what they are vs. just having agressive/innapropriate OCD talk. My son would have a physical jolt reaction to intrusive thoughts and I encouraged him to tell me what they were no matter how bad. He would say "Goofy Face (his name for his OCD/intrusive thoughts) is telling me to tell you to wreck the car, but I don't want you to) I wanted him to share them with me so we could talk about them. I also cautioned him from telling others because they

I struggled with this too. My immuno really wanted it too because my DS has a complement deficiency (mannose binding lectin) and they thought SAD on top of it would warrant some other treatments. I ended up doing it. I waited until he was stable and I saw no adverse reaction. He did have a strong positive response to the vaccine. He had the vaccine the first week of January and had been flare free since. We will still refrain from other vaccines such as MMR, Chicken Pox, Dtap etc. I just don't want to risk it. It was a really tough decision, but in our case, no harm done that I can see.