lss

EAMOM, How much more than 250 mg of zithromax do you think a child should be taking. My son is 9 years old and weight is 90, should it be more than 250 mg? Also, we have been giving him Motrin at night, seems to help him sleep. Any advice on how often is too often. We just can't stop the tics, and one of his teachers is sick, so we can't get away from that. He also had a tooth that was bothering him, I'm wondering if that could have added to the symptoms. We had a filling done today, maybe we can see some relief, don't know. Linda

Has anyone heard of DMG? Anyone using this, if so has it helped and how. Linda

Has anyone here heard of or used Colloidal Silver? If so, what were the affects. Linda

Has anyone here used Colloidal Silver? If so please let me know how it has affected and why you used it. Ls

Greeneyes, My son is allergic to Penicillin and the doctor initally gave him cefdinir (which I believe is the same as clarith) and his tics also got worse. Dr. swithced him to zithromicin and it worked much better. Linda

Dut, Would love to hear what the doctor says after you get the results back for the IgG and IgM and what this all means. Linda

Hi Pat, Sorry to hear that Gabby is not doing well. As you remember, my son had his urine and blood tested and I was told he was allergic to gluten and any kind of dairy, eggs, etc. Afterwards, I took the results to my regular peds dr. and she looked at them and told me to disregard them. She had already done blood work for celiac disease and it came back negative. She did suggest reintroducing the dairy and eggs back into my sons diet slowly. As for the Kavanice, he was doing great until he was around a teen who is a strep carrier. His tics came back for about 2 weeks. Yesterday was the first day that they were actually much, much better. He is still having the night dreams, and waking up, but it seems its only in the first hour of his going to sleep. Once he wakes that first time, he is fine for the rest of the night. I spoke with a dr. who was at Yale and is now in Chicago (not Dr. Leckman) who is a friend of my step-son-in-law, and the only suggestion he gave me was to NOT use any psych drugs. He did speak very highly of Dr. Leckman and said if it was his child going thru this he would either go to Yale or to Childrens Hospital in Philadelphia. He had not heard of Dr. K. By the way, my son is still on the zithromax, and when I went to pick up his refill, they had given me the generic brand, which I never use, but I did notice that they are white, not red. I'm wondering if this would make a difference with you daughter and the dye? I've noticed some people posting the dangers of having IVIG. Were you at all worried about it with Gabby? I'm thinking of going up to Chicago in March (am also still considering going to Melbourne, Fl to have it done there), but after reading these post, I'm begining to get worried. My prayers are with you, please keep me posted. Linda

Darla, I can tell you that the neurologist that we saw 3 times, and never again, told us that there was no difference between Pandas and tourettes. I think not. I specifically told him I would NOT give my son (9) anti-psychotic drugs. I can also tell you that the psychiatrist that we took our son to also AGREED with me against the anti-psychotic drugs, we did try clonidine and one other high blood pressure drug that they use for tics, they did not work for my son. I can also tell you that I spoke with a doctor at Yale who agrees with me as far as the anti-psychotic drugs. Dr. K in Chicago also is against given these kids these drugs. Linda

Dedee, I had success with the Kavanice for my 9 year old son's tics. However, about 2 weeks ago we were with a family who has a son that is a strep carrier, and the tics came roaring back. Back in November he was also around someone with a viral infection and his tics came back, but only for a few days. I kept him on the kavanice and that seemed to help get them under control. But the strep, not so easy. I got the kavanice from a DAN doctor. If you email Neuroscience, they will email you a list of providers in your area. email: marie.loughlin@neurorelief.com Linda

Hi to all, I can't seem to view the video on Dr. Swedo. Help! Linda

Dedee, If you find something that works for the tics, please let me know. We tried the Kavanice and it seemed to work for the tics, then we were around someone who is a strep carrier, and my son got the tics back, maybe a coincidence, but I think not. He had also been around others who had a viral infections, and his tics came back then too, but only for a few days, like 2-3, but the strep carrier, seems to have triggered the moodiness, tantrums as well and this time its been about 2 weeks. What does the 5 Htp do and where do you get it? Linda

EAMOM Are you saying that if a child with Pandas is around a strep carrier, that this would cause a "flare-up" of Pandas symptoms, even if the strep carrier didn't actually have a strep flare up? I'm trying to figure out if this is what happened to my son with this latest flare-up of tics/dilated eyes and his behavior. Thanks, Linda

We've been using high doses of Probiotics for over a year and a half due to our son being on Augmentin for 2 yrs. There have been no ill effects from the probiotics. In fact, we notice negative effects if don't keep him on them. The secret to probiotics and yeast is that you should change brands/strains every 30 days or so, so that the yeast does not have a chance to adapt. There are several high quality brands that we rotate with. Pharmax has a HLC strain that is very good (can get them up to 24 billion/pill), along with their strain that helps casein allergies called Mindlinx. Kirkman's sacromycese (sp?) is another one along with their Three-Lac. We have had good success with these. Occasionaly, when I have slacked off and his yeast blooms, we've had to resort to a 2 wk daily dose of Diflucan to get things back on track. I think taking the anti-fungal first (and probiotic simutaneously) and then following with probiotics 2x day has worked the best for us and other kids we know. There are studies out there showing that probiotics help keep the gut lining at a pH that bacteria and viruses have trouble colonizing at along with helping to heal leaky gut. They also help keep secretory IgA at more healthy levels. Hope this helps. Scrapmaxx Scrapmaxx, You mentioned casein allergies (Mindlinx), does your child have food allergies, or celiac? If so, can your child eat the foods with this supplement? Linda

Amy, Did you speak with Dr. K regarding the IVIG? I'm curious, because my sons tests results show normal for the IGA, and for the Tissue Transglutaminase IGG, IGA but high (51) for the IGG. Tell me why they can't have IVIG. We are considering having it done this summer. I would think that having the IVIG would actually help, but I may be wrong. Linda

EAMom and Buster, Wanted to know if you have any insight to this link and what if any do you think it has to do with our kids with Pandas http://www.immunedisease.com/patients-and-...deficiency.html Linda

Amy, Reading your posts. Did you have Neuroscience do the Pandas panel, and one more question, did you child have tics and are they gone after IVIG. Ok, one more, did you use Dr. K? Linda

Worried Dad, Michele, I thought it was just me imagining that my son's tics and dilated eyes, temper were from something else. A friend of his at school was not feeling well, had a temperature, but his mother (who is a dr) gave him tylenol and sent him to school, of course by the end of the day my sons tics were back. I just don't understand why parents send sick kids to school. So now I'm, wondering if the Kavanice we are giving my son is doing any good and also if I should start the antibiotics again. I was giving the antibiotics with yogurt to counteract the yeast, but we found out he is allergic to dairy, eggs, gluten and caisin. Any suggestions. Linda

As I was reading all the post on the antibiotics, I am wondering if any one's child has been tested for Candida. My son had some tests done and he showed high amounts of it. The dr. thought it might be from all the antibiotics. Also have a question for all of you: Have any of your children's Panda symptoms started after being around a sick child with anything other than strep? Linda

Pat, Funny you should mention corn. Corn was about the only thing my son was NOT allergic to. Did you read my post under NeuroScience. Also, the Kavanice has been working great on my son, however the tics are back this morning, but I think its because one of the kids at school is sick with a temperature and his mom specifically told me he and the rest of the family were coming down with something, which leads me to believe Pandas/Pitands. Hopefully this is short lived (the tics). Have you gotten the results from NeuroScience yet? Linda

Pat, Aside from the tics, he also had horrible nightmares, and lately he still wakes up in the first hour of his sleep, but just talks about things, example, one night he sat up in bed and said, "i just like it, i really really like it", and or " the one in my room is bigger, and the one in Connors is not so big" and not getting up upset and hitting the ground, crying kind of thing. The biggest change is that the teachers emailed me and said he was more calm and focused at school, more willing and open to suggestions, and his main teacher also mentioned that he was happier at school. I'm not sure how or what the Kavinace does, but I'm sure that is what is helping him. I will tell you that I have heard some tics, but only at night, while he goes to sleep for about 5-10 minutes, but nothing at all like it was before, so I'm thinking that this may be his way of falling off to sleep. I will ask the doctor about the kavinace and also about the levels. I'll let you know what he says. The Neuroscience was the one who suggested we use the kavinace as well as the CalmPRT, Jr. Another interesting thing; the ped doctor had ordered blood work for celiac and it came back negative, however when we did the specific Igg it showed the allergies. I'll have to call her as well and find out what the difference was in testing. Linda

Walt, I have been very fortunate in having friends suggest these doctors. Don't know where in DFW you live, and some of them may be a drive for you, but well worth it. We have seen Dr. Johnson - Johnsonmedicalassociates.com There is also ehc.com and Dr. Constantine Kotanis, we have not seen either of them, but I hear they do the same. As for a doctor in Dallas that has actually communicated with Dr. K in Chicago, that would be Dr. Chiniwala who is in the Trinity Hospital building in Carrollton. She had a very open mind about Pandas and had no problem listening to me and my "theories" ordered blood work and prescriptions according to Dr. K in Chicago. She is a pediatric and internal med. dr. Linda

We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others. Kavinace is a amino acid which clams the nervous system. Kavinace contains 4-amino-3-phenylbutyric acid and Taurine to help support inhibitory neurotransmitters. Taurine functions as an inhibitory amino acid, acts as a GABA agonist, may increase GABA synthesis, prevent GABA breakdown and block GABA reuptake. All of these effects enhance GABA function. 4-amino-3-phenylbutyric acid is a GABA derivative that agonizes GABA receptors and easily crosses the blood-brain barrier. Lss

I think you said that the kavinace worked for you guys and the travacor made things worse? What's the difference between the two - I had thought that the kavinace was formulated for adults and the travacor for kids. Pat The Kavinace and the travacor are completely different formulations. It didn't matter whether the kavinace was for kids or not. I know of someone whose child was autistic and was using the Kavinace with great success for anxiety so I decided to try it out. The travacor has 5-HTP in it and I think my ds reacted to it, or it was the combination of the 2 supplements together...since he had already been on the Kavinace for about a month when we tried out the Travacor. We have also used their Endotrex spray which makes my son tic more(it a spray of theanine sublingually) but my dh loves the theanine and thinks it relaxs him. So, in other words, everybody is different. Even if they have the urine test results from Neuroscience, they can make mistakes in recommending a supplement so I think it's all trial and error. I think for Neuroscience the stuff for kids may come in powdered formulas or in smaller capsules but the formulations themselves are the same? Check out their website for more information: www.neurorelief.com Bonnie I know it contains vit B 6 and I've heard that getting too much of that can be a problem - have you heard anything like that? Also, how much kavinace were you giving and how much does your son weigh? I will probably consult with the DAN doc when the results come in from neuroscience labs before I actually give the kavinace, but I had read about it and it sounds like it should work. Did your son have any problems staying asleep before the kavinace and if so, did that change with its use? I wonder about long term use and dependence - know anything about that? I'm thinking that it might be good support while PANDAS symptoms are going strong and once they resolve, maybe it won't be necessary to take the kavinace anymore. Pat, We found a Dr. who is a Allergy Dr as well as a DAN. He had us send in a urine sample to NeuroScience as well as a stool sample to another lab in Chicago. We still don't have results back from Chicago, but we did get back the NeuroScience results, and our son's GABA, Dopamine, Serotonin, Nonrepenephrine and Epinephrine were elevated. NeuroScience recommended Kavinace 1-2 capsuls 30 minutes prior to morning meal as well as Calm PRT Jr. The doctor here in Dallas has all the NeuroScience products and we started my son on the Kavinace, after only 1 day, his tics were gone! We still don't have the CalmPRT, the doctors office was out. He also had run other blood work and we found out that my son is also allergic to eggs, wheat, milk, so we have to start doing a gluten free diet and well as dairy free diet. I have noticed a huge difference in my son. The doctor was very expensive, but very worth it. He also tested high for candida, which he thought was due to the antibiotics, so he prescribed Niastin (not sure that's how you spell it). Hope this is helpful to others. Lss

Colleen, Look at Worried Dad postings. I beleive his son is 12. Linda

Amy, Good luck this coming week and keep me posted on how things go after IVIG. We are still on the fence about doing the IVIG. Our doctor here talked to Dr. K and prescribed the steriod burst, but I'm holding off a few days. I've heard that sometimes the steriod burst can have good results even up to 90 days but also as short as 2 days. All my best. Linda