P_Mom

Lisa, I would highly suggest (being symptoms came on suddenly and dramatically, and the recurrent ear infections), that you get blood work done and check titers for ASO titer, antiDNAase B titer, Mycoplasma, and Epstein Barr. If any of the levels are elevated, it would be very likely that this is the cause of these tics and behaviors. Antibiotics should dramatically lessen these if this is the case. (there are also other treatments if antibiotics don't work.) It can't hurt to get these tests done, atleast if you do you can know what you are dealing with. (pandas or Pitands) Then, you can go from there. Get the tests done ASAP while she is symptomatic, because if you wait too long, the titers can become normal and you can miss the diagnosis. check out www.webpediatrics.com, click on PANDAS/PITANDS. Kelly

You know, I guess I was fortunate with the pill swallowing thing. I have an 8 yr. old and a 5 yr. old. I just gave them a pill one day and said, "let's see if you guys are big guys and can swallow this." I kinda made it like a challenge thing. I told them to get a decent amount of liquid in their mouths, and then just swallow it all, including the pill. To my amazement, they BOTH did it easily, looking at me like "what's the big deal." I made a big deal out of it after they did it. I don't know, I guess it just worked out for us, hope you have the same experience. Yes, I agree, it sure helps to be able to "talk" to people who understand! I pray your son continues to do well!!!

I'm sorry, I forgot to mention. Can your son swallow pills? I got my just turned 5 year old to do it, and he did it easily. I just make sure I give him the smaller 250 mg pills, and if he would need to take a 500 mg does, I would ask for double the prescription at 250 mg per pill, and then give him two, do you follow? Anyway, I did this to avoid all the colors etc. in the liquids because I feel they are a trigger too. Kelly

Hope, My husband is also allergic to Penicillin drugs, so, when he needs an antibiotic, the doctors will generally give him Zithromax. He has also taken Cipro, but, that is a stronger, wider spectrum antibiotic. If his throat is bothering him even more on a couple days of the antibiotic, I know I would most likely switch, especially with the PANDAS and everything. Take care, let us know how he does. Kelly

Thanks for your post regarding IVIG. I did not state that it was without risk, because, there are certaintly risks involved, and every parent would be made well aware of them if they considered this route. It is generally considered a "safe" procedure, as in, lets say a tonsilectomy. (just to give a reference, not that they are the same) Yes, both carry risks, but, both are considered routine and generally safe procedures, but, both can sometimes have a negative outcome. I would not consider this as first line treatment either, but, we would consider it if the other treatments failed and my child was suffering. I do not believe there is any chance a parent could even get IVIG for their child without being completely informed by their physician on the risks it involves... no physician would administer this treatment without the parents being completely aware of everything and then consenting. It is widely used and can really benefit a PANDAS child when the situation warrants it, and, I believe we should all be aware that this treatment does exist for your child if all else fails.... making parents aware of the possibility was my intention. Kelly

Sure, we decided to do it prophylactically because with more strep., the more chance of symptoms becoming worse and lasting longer and harder to manage, not to mention the risk of some symptoms possibly becoming permanent. I spoke with Dr. Swedo's assistant from the NIMH, and she suggested prophylactic antibiotic, stating "it works very well." I also read an article by Susan Swedo stating, "the bottom line is this, prevent strep and prevent future exacerbations, etc." something to that effect, it is not a direct quote, I just know it is important to prevent strep. Although we do get increase of symptoms with other illness, they are mainly mild, we just know we had a BAD experience with strep. Also, in weighing the pros and cons to prophylactic or not, the risk of more strep and the damage it can cause far outweighs the risk of the prophylactic. Our Dr. even said that it is "a no brainer" to him, and that the prophylactic is definitely safer as opposed to what strep can do. Let me know if you have any more questions, I am happy to help, I know how it is!! Kelly

ad-ccl, What great news and I will be praying your son indeed is coming out of this long tunnel, it provides so much hope to hear stories such as yours. Emma, I agree with ad-ccl, it really depends on the condition of your daughter. In our case, we will do the same, up the antibiotics IF we feel the symptoms warrant such action, even with a viral or whatever. I might try upping the Pen Vk if symptoms were significant enough, or just may let it ride, but, if the symptoms were really significant (strep, mycoplasma),we would use a different antibiotic with more immune-modulating effect, such as Zithromax. Let us know how she does and what you decide to do. Kellys

He is in Chicago, and , yes, I would say your flu and his increase of symptoms are related.

Yes, IVIG. There are several documented cases where IVIG has resulted in lasting resolution of symptoms. I spoke to a MOM whose son had IVIG after first episode of PANDAS, 6 months later, when titers seemed to just stop coming down. They opted for IVIG (Dr. K), and now 2 years later he is still symptom free, has had No flairs, even with illness and exposure to strep SEVERAL times. The NIMH even used IVIG with great success and stated these kids had lasting benefits, I really don't understand why it is not more widely recognized and used. I posed this question to the NIMH nad have not received an answer, yet, when I asked other questions, they either called or e-mailed me. I believe that since this is "new" and controversial (why, I don't know), doctors are afraid or not quite sure what to do. Yet, IVIG is safe and widely used for other immune disregulation illnesses every day. I have looked into everything and many doctors, and, if need be, (and I pray not), Dr. Kovacevic will be the doctor we go to next. Dr. Murphy is definitely a good bet, but, from what I have heard and I have "talked" to her via e-mail, she only uses antibiotics, and, some kids need more than that. It also seems to me that if your kid has a negative strep titer, she automatically rules out PANDAS. By the time my kids got their titers ran, their symptoms were almost gone, and their tests were negative, but, they are still PANDAS. The titers need to be drawn when they are in active episode, otherwise, the titers are not much help. Also, Dr. K realizes this, and he also acknowledges that other illnesses and viruses can cause PANDAS, (PITANDS), and he checks for these titers as well, which I believe is highly important. PANDAS is not so cut and dry, check for strep titers, and if negative, no PANDAS. The diagnosis involves much more and several other factors and illnesses. Kelly

I have been in touch with Dr. K NUMEROUS times, and have had phone consults with him. I really do believe he is the best at dealing with PANDAS. Dr. Murphy is also well respected, but, I don't believe she goes further than antibiotics. I do know of cases where (I spoke to one Mom personally), he has cured, yes, I said it, PANDAS. Kelly

I just wanted to add, be careful when using Penicillin for an ACTIVE case of strep. That is what my kids took this summer when they came down with strep, and it did not clear the infection. wITHIN 3 DAYS OF STOPPING THE ANTIBIOTIC, THE STREP CAME BACK AND THEN cHEPHALEXIN CLEARED IT. I HAVE SINCE READ THAT pEN IS STARTING TO FAIL TO CLEAR AN ACTIVE STREP INFECTION IN 25% OF THE CASES. i OFTEN WONDER IF THIS WOULD HAVE ALL OCCURED IF THE STREp WAS KILLED INITIALLY, AS i KNOW BACK TO BACK CASES OF STREP INCREASE THE RISK OF pandas. (sorry, had caps lock on.

Yes, we are on prophylactic antibiotic, but, this just started about 3 weeks or so ago. Before that, my son had two flairs that a course of Amox, full dose, ten days, cleared. We are now on prophylactic and have not had a flair yet. If that occurs, whether it be viral or not (amox. cleared my sons tics after a viral, strep started it all initially), we will do a course of Azith and if strep we plan on using Chephalexin. (for three weeks) Kelly

Thanks.. just a note on the Xylitol. It was interesting to me to see you mention it, I have Xylitol gum in the house CONSTANTLY, and encourage my boys to chew it. I have been told by a Doctor it is very beneficial in helping prevent infections by inhibiting the growth of bacteria. He recommended the gum for kids who can chew it, and he also said the pharmacy will mix up a Xylito liquid for babies and toddlers who can't chew gum! Kelly

Bmom, In my opinion, it sounds like absolute PANDAS to me, almost identical to what I am going through with my boys. Tics, etc., start suddenly after strep, die down, and then emerge with ANY illness. (although the worst by far is strep). When they are ill and vunerable, there are definite triggers, T.v., stress, excitement, salicylates, foods, etc. These things also can be tolerated well when the boys are well. It just soounds like us SOOOOO much, and we are PANDAS, I would look into that route first if I were you. By the way, so far, when my boys have an illness and increase of tics (big increase), a round of Amox. has cleared them up. (even when it is not strep) Hope this helps. Kelly

Hi, Unfortunately, I do not have experience with the Bicillin, but, I was wondering if you could tell me what the Amy Yasko strep protocol is? THANKS!!

Thanks Cheir. Inspiration is always welcome here! I have many, many, spiritual, emotional episodes such as you describe. I do get what you mean as to the "why" of everything, and, that it doesn't really matter as long as your son is happy and healthy and things are working. I on the other hand (I am sure you noticed have always been a "why" person and have been critized for it and I think (well, I know) it drives my husband nuts. Most people seem to be able to accept things easier than I can. I am working on it, but, on the other hand, God made me this way, so, I am sure the reason for it will be revealed someday! Kelly Oh, how you you say your son is doing today? Just curious 'cause I know it was bad and he was hospitalized at one point. Does he tic daily? How about the OCD and other emotional issues? THANKS!!!!!

Mark, From all my research, and from all I have been also told by Doctors, Omega 3's are VERY important with PANDAS. Omega 3's are anti-inflammatory and help reduce inflamation on the brain from PANDAS, plus, they are so essential in helping the brain repair and protect itself. Omega 6 and 9's (not that they are bad, just don't supplement) are not recommended for PANDAS, they do not have the same benefits for PANDAS as the 3's do. Also, Dr. Murphy recommended the that the Omega 3 ratio be higher in EPA's than DHA's. I hope this helps. Kelly

Just a big thank you for showing us how to fix the problem. All of the sudden, the format changed (from standard to linear, I now know), and it was driving me crazy. How refreshing to have the good old standard back! Thank you, Cheri! Kelly

Hey, I just read in that site above, under Forums, and then under the first post....what to do, how to start....... Number 8, I think, says to give Epsom Salt baths for salicylate sensitivity because it helps to detoxify sals........ hummmmmm, how interesting!!!

Maybe this will help more.... http://www.salicylatesensitivity.com

Hi, Just wanted to reply about the salicylate thing again. One of the top 5 sources of salicylates are artificial flavors, colors, and food enhancers in general. I attributed my sons sensitivity to artificial colors, etc. to 'well, it's artificial, no wonder." Only to find out recently that the artificial stuff is a top source of salicylates, which I now believe is at the root of their food sensitivity (even mine) at our home. (no problems with milk or gluten, although I was falsely accusing milk at first Since drastically reducing all the artificial stuff, OJ, tea, tomatoes and tomatoes products, certain fruits, vegetables and fruit yogurts (which we consumed daily), although it has been only about two days, everyone seems much better, more aggreeable, etc. Also, Ethan has not had a bad "red ear" outbreak yet. I am praying I solved a piece to our puzzle, and this is something I have been dealing with myself for as long as I can remember! Check out this link: you won't believe the things salicylate sensitivity can cause (notice tics on the list, redness, flushing, moods, etc. Many of the symptoms ring true in our home) www.salicylatesensitivity.com Hope this helps someone, it did us! Kelly

Now I'm confused, Michele. I thought Coromega was the fish oil, omega 3 stuff that is like an orange pudding type thing that comes in a ketchup type thing?!

Hi Mom of One, Did you get the message I sent you? Look up on the upper right hand corner of the screen and it will tell you if you have any new personal messages, if so, just click on that.

Hi Faith, Yes, how fun that would be. Maybe we should try to organize it!! What do you all think? Anyway, regarding the meningitis, how very sad, yes, unfortunate things like that do happen. But, be advised, the meningitis vaccine is for viral meningitis, not bacterial, there are two types. The bacterial one is the killer (the viral form of menigitis is much milder) and is very likely to be what those kids unfortunately contracted, non of our kids are protected from bacterial meningitis from any vaccine from what I understand. Kelly

Has he been sick lately? It could be the result of a virus or illness...... When my older son started ticcing pretty badly one day, I gave him a round of antibiotics and it cleared the tics. This happened twice, once from strep and once from a virus.