technodad

We have been giving him soy milk. He did not like it at first but is getting used to it. Ironically since we swithced him to soy milk it seems his constipation has gotten better as well

Well we had our appointment and I am a little disappointed. I have waited a couple weeks to post about it to see how things were going. About 2 weeks before the appointment his tics were really bad so we decided to try to eliminate milk from his diet. So we started giving him soy milk in it's place. On the 5th day we noticed a big improvement, probably 60-70% better. The next week was his appointment with the Pediatric Neurologist. We discussed his symptoms and even showed her a recording I made when he was really bad. She diagnosed him with TS. I asked what about Pandas and she said since his symptoms did not have a rapid onset and since we have a family history of TS (me) that it prolly is TS. I asked what about testing for it and said she could order a throat swab strep test if I wanted but would need to have a baseline to show if the strep titers were rising. I declined because it was obvious she was just agreeing to the test to appease me, also about a month ago my local doc gave him throat swab strep test and he was negative for strep. So I thought paying for it again was a waste. She seemed somewhere in the middle about PANDAS. She explained that some people dismiss it completely and some think everything is PANDAS. She did say that they have treated about 30 kids for Pandas with antibiotic. However I asked about trying an antibiotic for my son and said that since TS syptoms wax and wane that how would you know that the antibiotic is helping or just the symptoms waxing and waning and that you can not leave him on an antibiotic forever. Another thing she said was about the milk. I said we removed milk and think it helped alot and she cautioned that how do you know it is the decreased milk and that it is not just the symptoms waxing and waning. She said we may want to consult a nutritionist because not drinking milk he may not be getting some of the micro nutrients he needs. She did say to stick with the no milk and see if it continues to help. Just warned about the micro nutrient thing. Which leads us to hollowean candy. He was really doing well with no milk for about 1 week, then he went trick or treating and first day had alot of candy and he starting ticcing alot (mainly vocal) again. So we put his candy away and only gave him 1 small piece per day the last week. Some days he forgets about the candy and has none, however he ticcing is still alot more than it was. Which makes me wonder if removing the milk actually was helping or if he was just waxing and waning like the doc said it could be. For those who have removed milk, have you ever worried about the micro nutrients in milk that your son/daughter is missing?

Well we had our appointment and I am a little disappointed. I have waited a couple weeks to post about it to see how things were going. About 2 weeks before the appointment his tics were really bad so we decided to try to eliminate milk from his diet. So we started giving him soy milk in it's place. On the 5th day we noticed a big improvement, probably 60-70% better. The next week was his appointment with the Pediatric Neurologist. We discussed his symptoms and even showed her a recording I made when he was really bad. She diagnosed him with TS. I asked what about Pandas and she said since his symptoms did not have a rapid onset and since we have a family history of TS (me) that it prolly is TS. I asked what about testing for it and said she could order a throat swab strep test if I wanted but would need to have a baseline to show if the strep titers were rising. I declined because it was obvious she was just agreeing to the test to appease me, also about a month ago my local doc gave him throat swab strep test and he was negative for strep. So I thought paying for it again was a waste. She seemed somewhere in the middle about PANDAS. She explained that some people dismiss it completely and some think everything is PANDAS. She did say that they have treated about 30 kids for Pandas with antibiotic. However I asked about trying an antibiotic for my son and said that since TS syptoms wax and wane that how would you know that the antibiotic is helping or just the symptoms waxing and waning and that you can not leave him on an antibiotic forever. Another thing she said was about the milk. I said we removed milk and think it helped alot and she cautioned that how do you know it is the decreased milk and that it is not just the symptoms waxing and waning. She said we may want to consult a nutritionist because not drinking milk he may not be getting some of the micro nutrients he needs. She did say to stick with the no milk and see if it continues to help. Just warned about the micro nutrient thing. Which leads us to hollowean candy. He was really doing well with no milk for about 1 week, then he went trick or treating and first day had alot of candy and he starting ticcing alot (mainly vocal) again. So we put his candy away and only gave him 1 small piece per day the last week. Some days he forgets about the candy and has none, however he ticcing is still alot more than it was. Which makes me wonder if removing the milk actually was helping or if he was just waxing and waning like the doc said it could be. For those who have removed milk, have you ever worried about the micro nutrients in milk that your son/daughter is missing?

My son is 6. He had a lot of sore throats over last 2-3 years. He tested positive once out of four times he was tested for strep. He had a t&a last Nov and has not had a sore throat since. However we have ts or at least tics that run in our family, as i was diagnosed with mild ts as a kid and i have a cousin who has tics, also his mom has had off and on minor twitching. Also, he get's worse when he eats and is excited (same times I get worse) such as when he is opening birthday presents and going to soccer games. Also, he has slowly gotten worse for about a year. It did not suddenly happen. It did get a lot worse first couple weeks of school which included a lot of big noticeable twitching of head/neck/jaw/arms/chest/whole body. However now it is mainly vocal throat clearing and pig like grunting with a little jerking of chest/shoulders when he is clearing his throat. It sure seems like the same kind of TS I have but a little worse. How many days should I try magnesium to give fair shot to see if it will help? After a teaspoon last Sunday he seemed worse, but maybe he was worse for some other reason and not the magnesium. We have an appointment this week with a Pediatric Neurologist at a Children's Hospital who also is an Assistant Professor of Pediatrics at a nearby University? I talked to the nurse and she said they have treated a couple kids in their practice for PANDAS with antibiotics and other meds. I asked on the phone how do they determine whether kids have PANDAS or TS and she said mostly doctor will ask questions about symptoms and maybe do lab work. Are Pediatric Neurologist's good doctors to make the PANDAS diagnosis? What kind of questions should I bring to the appointment?

I started a topic in the PANDAS forum. This neurologist we have an appointment with is a Pediatric Neurologist at a Children's Hospital and an Assistant Professor of Pediatrics at a nearby University.

I have an appointment this week with a Neurologists? I talked to the nurse and she said they have treated a couple kids in their practice for PANDAS. She said they start with antibiotics. I asked on the phone how do they determine whether kids have PANDAS or TS and she said mostly doctor will ask questions about symptoms and maybe do lab work. Are Neurologist's good doctors to make the PANDAS diagnosis? What kind of questions should I bring to the appointment? This Neurologists also works as an assistant professor at a University.

Thanks to those who have responded. Just to update we are trying removing milk from his diet first and see how it goes. We also have an appointment this week with a Neurologists? I talked to the nurse and she said they have treated a couple kids in their practice for PANDAS with antibiotics and other meds. I asked on the phone how do they determine whether kids have PANDAS or TS and she said mostly doctor will ask questions about symptoms and maybe do lab work. Are Neurologist's good doctors to make the PANDAS diagnosis? What kind of questions should I bring to the appointment?

Yes, I have Sheila's book and really think it is great. Thanks! Any other books you recommend? BTW, I made an appointment to see if my son has PANDAS... Thank you Is your apt with a Neurologists? We have an apt with a Neurologists who has treated kids for pandas with antibiotics and steriods

I have another question again which I am not sure should be here or a new topic started. When looking for food triggers how long after your child has the offending item do you ussually see the symptoms get worse. For example when someone notices something that is a food trigger say yellow frosting. How long after your child eats the yellow frosting do you notice his symptoms get worse. Does he get worse immediately or couple hours after? Also how long does it ussually effect them? If he eats a food trigger and it makes him worse how long do the worsened symptoms last? A day, couple days? A week?

My son complains his legs hurt alot, especially at night. Thought it was growing pains but maybe is related to the tics instead.

I did read that about mirolax hear yesterday. Wish i would have known that. However he has not had it for over a year and the tics did not intensify until last couple months. Today they are really bad again. Trying to avoid milk for few days to see if that helps. If he stays this bad for long i will definitely make an apt with pandas doc. The only thing is since he mainly has slowly gotten worse combined with him having mainly the same symptoms as I (but much worse) and triggers it sure seems more like ts than pandas. How many days should I try milk free? Also how many days should i try magnesium to give fair shot to see if it will help? After a teaspoon on Sunday he seemed worse, but maybe he was worse for some other reason and not the magnesium. He is still bad two days later and I have not given him anymore magnesium since Sunday

I meant teaspoon, not tablespoon. That is half the recommended does on the bottle, which coincides pretty well with recommended dosage for his age. He has always had a constipation problem for years. We had the hardest time getting him to poop regularly, we had to give him miralax off and on for a couple years. Some of the problem he brings on himself as he will hold it sometimes. He had been struggling to go yesterday as well, so I figured a win/win if it helps him with the tics and go bathroom. But like I said it seemed to make the ticcing worse.

I got him to take a full dose of the Nature Calm yesterday (1 heaping tablespoon). The most he has taken ever in a day. He seemed worse after it. Last night he had the worst throat clearing/grunting and jerking since the first couple weeks of school. Other times I have given him a half tablespoon and I never thought it was helping either. But yesterday it seemed to make him worse. Now he was excited because he had his cousin coming over, but he has had his cousin over many times without him being this bad. Not sure if I should keep trying to get him to take it or not.

My son is 6. He had a lot of sore throats over last 2-3 years. He tested positive once out of four times he was tested for strep. He had a t&a last Nov and has not had a sore throat since. However we have ts or at least tics that run in our family, as i was diagnosed with mild ts as a kid and i have a cousin who has tics, also his mom has had off and on minor twitching. Also, he get's worse when he eats and is excited (same times I get worse) such as when he is opening birthday presents and going to soccer games. Also, he has slowly gotten worse for about a year. It did not suddenly happen. It did get a lot worse first couple weeks of school which included a lot of big noticeable twitching of head/neck/jaw/arms/chest/whole body. However now it is mainly vocal throat clearing and pig like grunting with a little jerking of chest/shoulders when he is clearing his throat. It sure seems like the same kind of TS I have but a little worse. If he suddenly gets a lot worse I want to bring him to a pandas doc three hours away from us if I can convince my wife it is worth a shot.

thanks it has been a couple months now and he still has his tics mainly vocal, but they can be pretty bad at times. It is at his worst when he is eating, not sure what that means. Not sure if I should start a new topic for this but how long after taking the magnesium does it take to see some results? I have tried the natural calm but he will only take a couple days in a row because he does not like the taste. Also, tried the Epsom baths but he has sensitive skin and was starting to irritate his skin. Could anyone recommend any good tasting chewables for magnesium for kids? Seems to be some available on internet like these: http://www.nextag.com/chewable-magnesium/products-html