bmom

Im just curious Jeff, I remember reading that you discovered this by just implementing it to see what would happen, but have you had the IGG done to see if it shows these things on the test? I was just wondering as I am going to have my son tested and was hoping that people have consistently had accurate results.

It does sort of seem that my son would seem to fall in that category, yet my husband also has some minor tics so I am not sure. My son has had several strep infections so I just cant figure it out. Kelly- when you are referring to autoimmune therapies- is that antibiotics and is there anything else you are referring to?

Thanks Chemar, See that is where my confusion sets in-the titers. I had my son tested and they were normal. I spoke with Dr. Murphys assistant and she said that titers do not have to be elevated to be Pandas. It seems to be more illness related-and not just strep. She said some children do well with antibiotics while others don't but from their experience, children whose titers become elevated and remain elevated vs. going slowly down seem to be the ones that do not respond to antibiotics. I just dont know if I would be jumping the gun, yet I dont want my son to become one of those that repeatedly gets exposed until titres remain elevated and antibiotics do not help! It is all very confusing. Dee Dee and Michelle- did you have your children tested and how were there titer levels? So- if his levels are fine does that determine he is not llikely Pandas- yet he seems to only have symptoms with illness and not daily. Although I do not want to have him be exposed until it is daily and titerss remain elevated. Ill admit I do not understand this very much so let me know if this is not correct.

I am willing to go, yet I just don't know if I have enough info yet. He had major symptoms after an illness in Feb. and then recently some small symptoms in Nov during stomach bug. Do I jump on it and go now or do we wait and see what goes on and gather more info?

Michelle, Would you say your son is much better after doing the treatments or a little? Did he improve quite a bit after Nystatin and has remained improved? What was the time frame- He began Nystatin and 2 weeks later he was much improved? Thanks for the info. Also do you consider your son to fit under PANDAS only? How about you PL4?

I am just curious, has anyone heard of or done antibiotics only when there is an increase in symptoms? For example, not daily, but when you see symptoms rise even if strep is negative. Is this something Dr. Murphy would consider? I asked my sons ped if we could give it a try and he said no. He would not be comfortable- then he went on later to say his son is on antibiotics for acne daily- oh I get it his son can take it daily, yet mine we cant even try once to see if it would help. Sorry for the negative tone. I told him we were willing to go to a specialist, but would he consider it if that is what she recommended- no clear answer there. I am wondering if we go all the way to Florida if it will be useless if he disagrees. Emma- be thankful for your ped.

Ronna, I was just curious if your son had his tonsils out and if yes, what was the result of this- positive or negative?

Airbucket, I am still trying to figure this all out myself. I drive myself crazy trying to research and somehow discover the connection. One thing that I know is that all of the symptoms that you are describing in your son are likely connected. I truly believe that the gut is connected to the brain and the immune system and just wish that research would catch up with it. I just read Jenny McCarty's book about her autistic son who had digestion issues and she had him tested by an immunologist who said his immune system was as bad as someone who is dying of aids. Im sure that autistic, tourettes, adhd and probably many more children would be helped. So many people have described issues with their childrens digestion system and problems. Have you tried an environmental or DAN Dr.? This could uncover some of the mysteries-possible food intolerance or yeast? Good luck and please post your experience with Dr. Murphy after you see her. Her assistant just emailed me some Dr.'s closer to our location that also are familar with PANDAS so this may be an option for some that are not able to go to Florida or for some like me who are thinking that this could be a first step before making the long trip. The discussion of genetic TS and Panda and Pitandas has me confused. If they all get worse with sickness is the a differentiation. Could an adult with tics be untreated Pandas that resulted in daily ticcing? I ask because my son has had 2 episodes of ticcing. The first was explosive 10 days after sore throat and fever. Did not have him tested for strep thinking he was just ill. Still did not after ticcing began because after seeing 5 experts no one mentioned it. Then recently he had some increased-and different tics before, and during stomach bug. So it kinda sounds like Pandas or Pitandas, but unsure. My husband does have some minor tics so would this be genetic only and rule out the Pandas and Pitandas? Soooo confusing. Could it really be that it is all the same and just different factors for each child that makes them tic or is that too simple?

Judy, Just curious if it was the IGG test that gave you the info. on what to eliminate and if elimination of these foods have helped with tics. If it was IGG was it the Alcat specifically. Thanks and I apologize if you have already posted this info. The diet looks good and I am going to buy the book to read. I have been looking for a specific diet plan.

Yes, it does say it is from a plant source. Perhaps algae although it does not say. I think at this point I am just going to add some more of the dietary sources you suggested. Luckily my son likes salmon. I will add walnuts as well. Thank you.

Dr. Pulmetter has a pill that is not flax or fish I believe, yet it is DHA only. Would DHA only be okay. The whole ratio thing is also very confusing. I think Bonnie's is DHA only. What would be best?

I had a long talk with Dr. Murphy's nurse and research assistant the other day. She was very nice and informative. She talked about how important the Omega 3's are. My son was only on fish oil for a couple of days, but seemed to increase in tics so I stopped. When he was on flax he broke out into rashes on neck and began a throat clearing tic which stopped when I stopped the flax. So I just have let the Omega 3's go and he is doing pretty good. The nurse said that the Omega 3 could increase tics temporarily, but should die down and they are so beneficial. They do seem to be a wonderful supplement. I am just scared to use them. My question is, they are so confusing to me. I guess there are fish oil, flax, and I see the Dr. Pulmetter has a DHA non fish or flax the Sheila Rogers had mentioned when I did a phone consult. I haven't had him tested for Pyloria and so I guess I am shying away because I believe omega 3 make this worse. Is this true? Can anyone add imput on the die down info that the nurse suggested? I know that my son had major increased tics on the Kids Calm for 4 days and then much, much improved. Could this be the case with Omega 3 as well? Should I have him tested for Pyloria and nutrients to see if he is deficient in Omega 3 before beginning? I read Chemar recent post on the Omega 3's which made me think about it again. Any input on these would be helpful.

I also still go back and forth on the tonsil removal. It sounds like some people are on the fence about whether that is good or bad. I know you said it has worked well for your son DeeDee.

I am considering ordering them as well. Do you up the mag taurate when you see tics coming through? The concern I have is the grape seed extract and not having the vit c of the kids calm. Did anyone have trouble switching?

I guess I will schedule a consult with his pediatrician and see if he has another problem, if we could try antibiotics and go from there. I am just curious the tics this time started about 3 weeks before the illness came on. It did seem to peak at the time he was sick and is now getting better, would that come on that early?

My son usually gets his work done, only on occasion doesn't. At the beginning of the year his teacher was a little on him about it, but we just had his conference and the teacher said his progress has been remarkable. Maybe diet and supplements? I am wondering maybe so. I know he said that in class there are about 5 kids that always finish after him so it does not seem to be a problem right now. His explosion of tics was in grade 2 so his teacher does not know this year and the blinking has not been that noticable or interfered with work. One more question for Faith. As your son gets older, are the waxing cycles more noticable and longer or about the same each year?

Faith, Can I ask you how old your son is?

Thanks all for the replies. Lots to ponder. There is one more quetion- Do you think that Dr. Murphy would recommend antibiotics for flare ups only?

Thank you so much for the replies. Would the ALCAT test show if he was Celiac or would I need to do a specific celiac test? I am also wondering if Dr. Murphy would be able to suggest antibiotics during times of flare ups but not daily. When I took my son in this week, they only did the swab. I wonder if I should have a culture done. He seems to be feeling better now and I am thinking that I am seeing less ticcing. Michelle, I read last night that people with arthritus should also take the digestive enzymes. You may already know that though. I go back and forth as to if I should just take him to a specialist as he has always had light sensitivity and since the tic explosion we have just limited tv time. I guess he is usually ok daily so I will wait and see if there is a pattern. Im rambling, but Faith, we did see a few minor things growing up, but they would only last a day or two and perhaps be once a year or every other for a total of 3 times. He has just turned 9. I am just hoping that I can figure it out. I suppose my next step will be IGG as he has typical allergies. Anything else to recommend? He does not have behavior problems and I do not see any OCD symptoms. He is doing great in school although his teacher says occasionally he is slow on doing work. Thanks all and Cheri can you think of anything else I should do now? When the outbreak happened I did change diet and nothing seemed to help. Although if it was strep, perhaps antibiotics would have helped. When he had strep recently, he went on Pen V and I saw no ticcing.

Faith, does your son usually show tics on a daily basis or only during waxing? Have you considered going on antibiotics on a continued basis? How did you get your Dr. to do antibiotics during the waxing? Michelle, How is your son currently? I know you had taken him to many Dr. -Dr. Murphy and Dr. Demio. Was there one thing that really helped-gluten free, antibiotics, etc.? I dont know if I should push for antibiotics as this is really his only 2 flare and although it did go along with him having a bug, the tics started a 2-3 weeks before he got the signs of sickness. Would that make sense? I also am trying to figure in my husband having some tics as well. Currently my son is doing Kids Calm at 1 1/2 tsp. a night, calcium, a multi vit., and during this waxing I added taurine the last 2 days. I am considering adding a digestive enzyme. Would this be advisable or no? There is a fine line of doing too much/yet not enough. His hair analysis showed he had trouble digesting carbs and sugar so I thought that the enzymes and probiotics would help with this and there are times he complains of his stomach hurting after eating although only on occasion. Would enzymes be a benefit -Kim, Chemar, or Michelle or anyone else on this? Could I avoid going gluten free by adding enzymes?

My problem is I dont know if it was strep as he was sick with a fever and soar throat, but since he hadnt had strep in such a while I didnt take him in to Dr. -biggest mistake of my life. After a few days of being home, the fever, soar throat went away and 10 days later tics came on. My daughter got sick around the time the tics came and I took her in for swab, not culture which was neg. 3 months later we all came down with strep. My son had it first with frequent urination- checked for bladder infec. as he said he felt he had to pee but couldn't. no tics as I took him in right away this time and got on antibiotics. Not really any tics I could say for sure until now which I still am trying to determine, yet seems like they are only with tv and bright light or sun. I have been reading about digestive enzymes and these seem like they would be a biggie. Can they be harmful if not needed or only beneficial? Thanks Michelle for all the wonderful info.

Dr. Robbins is one that was interviewed in Sheila Rogers book and I believe Carolyn sees him. Will Dr. Demio do a phone consult without seeing the patient first? Do you think anyone can determine if it is a case of Pandas or Tourettes? My son also has allergy/ asthma will he look at that angle as well? Michelle- Has Dr. Demio's suggestions helped your son yet?

In Feb. he did seem to have symptoms of strep, yet he hadn't had it in 3 yrs. so I didn't take him in thinking he was just ill. 10 days after the illness is when the tics broke out. I didn't know of the strep connection nor did his pediatrician so I did not immediately have him tested. I did have his titres run about 3 mo after when tics were nearly gone after reading of the connection and they came back normal. I did have him swabbed this week and it came back neg. He did not have a fever. I was wrong about Dr. Robbins. I called to schedule the phone consult and they said he would have to be seen first. My husbands family said he had trouble with tonsilitus as a youngster. I am not sure if it could have been strep or not.

I also just called Dr. Albert Robbins office and found out that I can do a phone consult for $75. Has anyone ever done this and do you think it would be helpful? Does anyone know if I could do the testing from a different location or do we have to travel to Florida? We live far away, yet I am willing to travel if needed. Would Dr. Robbins be one of the best to see for this?

I am just trying to figure this all out. My son had an abrupt onset of tics in Feb. after a 3 day illness and soar throat. Literally can tell you the time and they were frequent and had many different. Started vitamins and changed diet and they diminished. Have been gone until the last 3 weeks. He began what I believe to be an eye squinting and blinking although not hard blinks and mostly when watching tv and in sun. This week he had a stomach bug. Also lax with diet during Halloween. I am wondering if I should think of this as possibly PANDAS or not? My husband does have some minor tics that seem to be consistent. I just dont know if my son seems more like a PANDAS case or not. My son has had strep a few times and they considered taking his tonsils once. Do you think I should look at as PANDAS or no? Thanks to all that can add input.