momofgirls

Someone please respond uote name='momofgirls' date='Sep 5 2009, 09:58 AM' post='37373'] Hi everyone I don't know if my daughter now 6 has PANDAS. About 3 yrs ago she had strep and developed a cough. The strep was treated but the cough remained. Pediatrician checked her for allergies and a pulmonarty dr ruled out asthma. She coughed for 6 mos. Looking back I wonder if it were her first tic. After 6 mos the cough resolved on its own in the spring. The next fall the cough returned and lasted about 3 weeks again resolving on its own. The next spring she got sick not strep but an antibiotic was prescribed and about two weeks later she started ticcing ie sniffling and tongue clicking. This lasted most of the summer but resolved. First day of kinderg she had and explosion of tics and severe OCD symptoms. She was not sick but stressed perhaps with school starting. Psych prescribed prozac and she improved over the next couple of months but symptoms continued up and down all winter. Finally we saw a DAN dr and strep titers were checked all negative. Her symptoms have been up and down since but relatively mild. She is no longer on prozac. Our psych agreed recently to try a 10 day course of keflex. What should I expect? If pandas would she improve? If she doesn't improve can I ruld out pandas? I am at a loss so any thoughts would be appreciated. Kim

Hi everyone I don't know if my daughter now 6 has PANDAS. About 3 yrs ago she had strep and developed a cough. The strep was treated but the cough remained. Pediatrician checked her for allergies and a pulmonarty dr ruled out asthma. She coughed for 6 mos. Looking back I wonder if it were her first tic. After 6 mos the cough resolved on its own in the spring. The next fall the cough returned and lasted about 3 weeks again resolving on its own. The next spring she got sick not strep but an antibiotic was prescribed and about two weeks later she started ticcing ie sniffling and tongue clicking. This lasted most of the summer but resolved. First day of kinderg she had and explosion of tics and severe OCD symptoms. She was not sick but stressed perhaps with school starting. Psych prescribed prozac and she improved over the next couple of months but symptoms continued up and down all winter. Finally we saw a DAN dr and strep titers were checked all negative. Her symptoms have been up and down since but relatively mild. She is no longer on prozac. Our psych agreed recently to try a 10 day course of keflex. What should I expect? If pandas would she improve? If she doesn't improve can I ruld out pandas? I am at a loss so any thoughts would be appreciated. Kim

Hi chemar They used berberine and something called GI revive which I think has the mastic gum and DGL in it among others. I felt like she did well on the herbs but then worsened towards the end. Now that we have completed them she is back to baseline again. She also still complains of frequent tummy aches. She is taking taurine, glyceine, argenine and 5HTP. Also something called BAM which is a balanced blend. Lots of B vitamins too. They said these supplements would naturally support her detox but it was not a true detox. We have currently stopped all supplements and are retesting organic acids, amino acids, and doing a porphryns test to check her levels. Honestly I don't see any difference in tics with or without the supplements. Colleen from the PANDAS forum suggested we rule out strep. I had her titers checked a while back and they were negative so I moved on but colleen suggested we look further into it because kids don't always test positive. We have talked to the dr about a trial of antibiotics to see if she reacts. I hope this helps. Thanks again hope all is well with your family

Chamar thanks for your response. What do you make of the H Pylori? Do you know anything about this bacteria or if it has ever been associated with tics? I was thinking that perhaps the bacteria caused dysbiosis and spiked the allergies to gluten egg and dairy. Does that make sense?

Hi I am new to the forum. I don't believe my daughter has PANDAS but she has been ticcing for a year. She tested for multiple food allergies, was low on many nutrients like iron, amino acids and BVitamins. Digestive stool test through metametrix showed poor protein digestion and an H pylori infection. No yeast like a lot of the kids seem to have. Do any of you know if pylori is associated with tics? Our DAN dr did herbal remedies for the pylori then we saw a GI dr to recheck stool and for possible antibiotics. He ran a quest stool test for pylori and it was negative. She also has occassional tummy and throat pain. So I don't know if the herbs erradicated the pylori or if the quest test is not as sensitive as the metametrix test. Even after finishing the herbs there is no improvement in tics. DAN dr is to address toxins next as my daughter tested high for various organic solvents like styrene, xylene, and benzene. I don't know if I should let the pylori go or pursue endoscopy. The GI dr didn't seem to take it too seriously and didn't respect the metametrix test. Kim

Hi I am new to the forum but have been spying on you guys for a while. I am always too overwhelmed to put the energy into posting but here I go... My daughter started ticcing a year ago and she is now 6. We are seeing a DAN dr and have found a lot of underlying problems. She doesn't have the yeast overgrowth like so many kids and had a good amount of good bacteria in her gut. However she did have H pyloria. I don't know at this point if it is related to her tics. She has food sensitivity to egg, wheat, and dairy. We saw great improvement 2 wks after starting the diet. Its really hard though we have been on it for 5 months. She also tested high in organic solvent toxins like xylene, styrene, benzene, and toluene! Dr has her on amino acids and B vits. Then they started a course of herbs for the pylori. We finished the herbs and went to a GI specialist to recheck stool and for possible antibiotics. Even after finishing the herbs her tics have not improved in fact they maybe a little worse. GI dr ran a Quest stool test for pylori and it was negative. I was so hoping it was actually still there so I could get antibiotics. I didn't really believe the herbs would do the trick. So now I don't know if I should believe the Quest test or maybe the pylori had nothing to do with the tics and the herbs killed the pylori and we are still left with tics. What do you guys think? I am desperate and heartbroken. Does anyone ever really "cure" their child or is this diet and supplement forever? Has anyone ever heard of pylori being related to tics and leaky gut? It seems most kids have the yeast but my daughter does not. Lastly I guess tourettes doesn't run in the family as far as I know. Do you guys think it matters and is there a difference in the prognosis? I am exploring medication options for my daughter now just for some relief but will continue to work on her health. But from what I read this stuff goes on for years. Does anyone ever get better? Any words of wisdom are welcome Kim

Wow that is great! I am new to the forum and was heartbroken when my 5 year old daughter started ticcing. She is now 6 and I am still heartbroken. I have spent so much time working with a naturopath to fix her that I haven't enjoyed her since. She has food allergies had a pylori infection and tested high for organic solvent toxins. She has improved greatly with diet alone but is still ticcing mildly. I want her well so I will continue working on her but in the mean time we have decided to try tenex for her tics. She has only been on it a week and not much improvement. School started today and of course I am worried. I am encouraged by your message saying it takes a little while to see improvements even with medication. I spoke to her dr today about the prescription and she seemed to think it should be working by now. She even mentioned antipsychotics as a next step. I would never do that especially with the mild tics we are seeing. After reading your note I am hopeful that the tenex may just tqake more time. How long has your daughter been tic free with medication? I may even ask our dr specifically about topamax if the tenex is not effective. She is very sleepy after upping the dose. Did you experience this with your daughter at first? Do you know much about the difference between tenex and topamx? Well I am happy for you and your little girl! I love hearing good stories on this forum Kim