Megan

Thanks so much! That helps a lot. By the way, if your son has lyme....we have done many protocols (abx with Dr. J in CT, then Cowden protocol, which was better than abx, and finally the Dr. K (seattle) lyme cocktail, which works more effectively and faster than anything. Dr. K is a genius. You can find a practitioner that follows his protocols and they can help with PANS as well.

Hi all, My son has improved a lot with parasite treatment (I will post a more detailed update later on both him and my daughter who are much improved through natural treatments) but recently came down with a terrible sore throat and a rash on his cheeks and chest. I did a throat swab and it was clearly positive for strep. I have a month of keflex on the shelf that I never had to use for my daughter and am going to start it since the infection is so bad. Can you all share what dose of keflex your child has been on for active strep throat infections and how many times it was given per day? My daughter was given it 4 times/day but I wonder if 3 times/day would work? I have read that it can even be given twice/day. My son is 67 lbs. Thanks, Megan

I would start with a check for lyme, as it can cause tics. You should try to find a LLMD (lyme literate MD). You can research a bit on www.lymenet.org go to the flash discussion and you can post to see what others think. It is the best lyme site in my opinion. Do you have any other symptoms such as fatigue or migrating muscle pains or headaches or sleep issues? It can be subtle.

Dedee - thanks so much for the great info. So glad to hear it has helped your daughter! How much did you start with per day in the beginning? Thanks, Megan

thanks so much - will check it out!!

I read some positive info on camel's milk and how it can heal the gut and the immune system. Has anyone tried it? If so, did it help and where did you get it? Thanks!

Thank so much - I will look into that Enhansa product. Have you tried it or know of others who have? Can ibuprofen actually end a flare without using abx if the flare is caused by a virus? My son's tourrettes has gradually worsened over the past 3 months as he became sicker and sicker with what we think is mono from CMV. Wondering if I should try to keep him on the ibuprofen or if it will evenutally stop working if that is what helped us in the beginning. My daughter has had virus flares for the past two years - I only now realize it must have been PANDAS or PANS. She would have good days between but now the good days don't seem to be happening much. She has good periods in the day but the tantrums happen almost every night. I wonder if ibuprogen or the enhansa might help her. Her stomach is sensitive to abx after having them for so long when we first treated lyme years aso. Thanks.

dcmom - how did you get a handle on it? Would love to hear protocols that have helped.

THanks all so much for your replies. I will respond again later when I have more time but wanted to ask how long your child's mono virus lasted? My son has had it for 3 months now. Which antivirals do you find helpful? Do you need to use them full time? Do you give abx too if the cause is viral? Philamom - would love the name of the ENT! Also - we saw some improvement recently with parasite treatment in my son. He was much worse when on the treatment, then made improvements after. Has anyone experienced this? THanks!

Hi, I gave my son ibuprofen for a fever over the weekend and the next day he was so much better - his tourrettes was much less. I am wondering if this was just coincidence because I have read it can help. If it helps, how long does it last for you? Do you give it daily? If it does reduce inflammation in the brain, are there natural alternatives that can work? Has anyone looked into this? Thanks so much.

I wonder if there are many of you whose child had gradual onset of symptoms and think their case may be from PANS rather than PANDAS? My son has been battling a bad viral infection for the past 3 months which we think is mono after having very high titers of CMV and HHV-6. He is still dizzy, nauseous, weak, fatigued and cannot focus. He also developed tourettes type behaviors and is extremely emtional. When he is upset, he says terrible violent things and when he is not he says inappropriate things like, "poo" over and over. He is also not listening as well as he used to and refuses to do what he is told more often. He did have scarlet fever last year so he has also had strep in the past but not many positive throat swabs and blood work is normal for ASO. We have been getting him to school about 3 days/week but he is a mess when he gets home. I am considering trying home-bound for a month or two to see if he heals faster. I am hoping that as he recovers from the mono, his tourettes will go away. Has anyone had this experience? If the cause is viral, has anyone taken antiviral meds with some success? Thanks.

I have two children I feel have PANS or PANDAS. My DD (6) primarily has severe, violent tantrums when she doesn't get what she wants and my son (8) has tourrettes behaviors saying violent things especially when he is agitated like, "I am going to kill you" or "I hate my family". They have other symptoms as well but these are the most prominent. My son is battling a bad case of a mono-like virus which I feel brought this on. I am waiting to get in to see Dr. Latimer next month but do not feel comfortable with IVIG for my kids due to their past history of lyme/coinfections and my concern that they could be reinfected through the blood supply. Does anyone know if she recommends PEX? Which doctors recommend this treatment now? I know it is much less common than IVIG. Thanks, Megan

Beeskneesmommy- thanks for your reply. I have been calling about Dr. Elia and they still don't have a date. Yes, we are on the mainline. I may call you sometime soon. My daughter's tantrums are worsening lately. Thanks, Megan

Hi all, I'm still waiting to get my child into DR. L and DR. E but was wondering whether it is essential to get the symptoms down prior to trying either IVIG or PEX? My daughter is reallly struggling with tantrums and now multiple personalities. It normally happens in the evening but can be set off during the day if she doesn't get what she wants. Two different antibiotics didn't help much and now she has stomach pain so I am worried she cannot tolerate more abx. If your child had symptoms going into these treatments, did the treatments work? Thanks so much, Megan

LLM- thanks for the lysine tip....she has been taking it for a month and actually her ANA was normal this past week which, according to our practitioner, is a sign that the EBV is going down. It's nice to have the confirmation from you that it helped. Thanks all for the info about the tantrums....I was actually wondering if it was some sort of ritual because it normally happens in the evening as we try to get her up to bed. At around 7 pm, we try to head it off by letting her watch a movie on the DVD player in her bed. We thought we had done so last night be she wasn't tired enough when it ended and she came back downstairs and started to run around acting like she was a horse and grabbing her brothers stuffed animals and harassing him. I had to physically carry her upstairs to her room screaming, which woke up her other brother, because she was messing up the house. When I carry her she claims I am hurting her because her skin is so sensitive from the neuro issues. Once the tantrum ends, she has to spit a lot of mucous. I feel so sad right now because her stomach is hurting too so I feel helpless...I feel the abx are too hard on her stomach. Thanks, Megan