LMama Posted July 1, 2009 Report Share Posted July 1, 2009 My 5 and a half year old son had strep throat a year ago, and developed strong tics for several months, with some OCD behaviors (slight). The doctor suggested PANDAS, had him on antiobiotics for 10 days. He slowly improved, and has been doing great for several months now. We have been ever so thankful to god for healing him. In the last month, he has had 2 sore throats. Both times, I took him to the dr. and they did the strep test. Negative. So tonight he started this new ocd behavior (again, slight at this point, but clearly ocd type behavior). What alarmed me most was that he was aware of the anxiety he felt and the need to "do" what he needed to do. he said he was afraid to tell me about it b/c he thought I would take him to the dr. :-( I reassured him that he was ok, and he went back to playing. Later I saw him "doing" his ocd thing. What can I do? I worry that he has strep even though the tests were negative. I am going back to the dr. tomorrow to ask for antibiotics regardless of the test results. He had a bad (hyperactive) reaction to Augmentin last year, so what antiobiotic would be best? How much and how long is usually recommended for PANDAS? I am so worried about him and I am afraid that I won't do the right thing. I have never posted to one of these sites (I don't even do facebook or myspace), so I am hopeful that someone sees this and replies. Any advice would be greatly appreciated. LMAMA Link to comment Share on other sites More sharing options...
LMama Posted July 1, 2009 Author Report Share Posted July 1, 2009 PS, obviously, my son got better last year, but it took more than half the year. Do many PANDAS kids get better with time? That is what the dr. told us last year. What can I do to make SURE that he has the best chance of recovery? Thank you for any advice... LMAMA Link to comment Share on other sites More sharing options...
ShaesMom Posted July 1, 2009 Report Share Posted July 1, 2009 Many of our kids have had negative rapid strep tests. Have your doc send the test off for a 72 hour culture. Also, strep can live in other parts of the body (ie: skin or nose) so a negative throat culture doesn't necessarily mean your son doesn't have strep. Ask your doc to also do the following blood work: ASO titer and Anti Dnase B. These would confirm a recent strep infection if they are elevated. Again though, some kids do not have elevated ASO titers eventhough they do have Pandas. A Sedimentation (another blood test) rate would indicate inflammation. Kids with Pandas have periods of waxing and waning. Symtoms disappear only to reappear next time they are sick. Lots of parents have had good luck with Azith, some Omnicef, and others augmentin. The majority of our kids are on prophylactic abx (long term daily use). If you have a doctor who has heard of Pandas and believes it exists--you are miles ahead of a lot of people on this forum. Keep your faith and God will lead you in the right direction. Link to comment Share on other sites More sharing options...
peglem Posted July 1, 2009 Report Share Posted July 1, 2009 My 5 and a half year old son had strep throat a year ago, and developed strong tics for several months, with some OCD behaviors (slight). The doctor suggested PANDAS, had him on antiobiotics for 10 days. He slowly improved, and has been doing great for several months now. We have been ever so thankful to god for healing him. In the last month, he has had 2 sore throats. Both times, I took him to the dr. and they did the strep test. Negative. So tonight he started this new ocd behavior (again, slight at this point, but clearly ocd type behavior). What alarmed me most was that he was aware of the anxiety he felt and the need to "do" what he needed to do. he said he was afraid to tell me about it b/c he thought I would take him to the dr. :-( I reassured him that he was ok, and he went back to playing. Later I saw him "doing" his ocd thing. What can I do? I worry that he has strep even though the tests were negative. I am going back to the dr. tomorrow to ask for antibiotics regardless of the test results. He had a bad (hyperactive) reaction to Augmentin last year, so what antiobiotic would be best? How much and how long is usually recommended for PANDAS? I am so worried about him and I am afraid that I won't do the right thing. I have never posted to one of these sites (I don't even do facebook or myspace), so I am hopeful that someone sees this and replies. Any advice would be greatly appreciated. LMAMA Well, I don't know what kind of reaction your son had to the augmentin, but it is known to cause a rash in people who have epstein barr virus (which can also cause a sore throat). But also, it seems like sometimes kids get PANDAS like reactions from triggers other than strep, anything that activates the immune system. It seems like strep is the initial sensitizing agent, but many PANDAS kids do have symptom exacerbations from any illness. Link to comment Share on other sites More sharing options...
LMama Posted July 1, 2009 Author Report Share Posted July 1, 2009 Thank you for responding. I have never posted to this type of thing, so it's exciting to know that someone is even out there! THANK YOU! I am printing out your post and will take it to the doctor tomorrow. Hoe often does your child get strep? I have been so afraid to let my son go anywhere other than preschool for fear that he would get sick. Then in the last month, I put him in a couple of Vacation Bible school sessions. the last one just ended last Friday, and he was in with a bunch of kids he didn't know. I suspect maybe that is where he got it? How can you protect your child? Does the prophylactic use work? I know that our dr. said they didn't believe in doing that. What about removing tonsils? Thank you again for your response. God bless you for being out there tonight. I have been worrying about him so much tonight. LMAMA Link to comment Share on other sites More sharing options...
LMama Posted July 1, 2009 Author Report Share Posted July 1, 2009 My 5 and a half year old son had strep throat a year ago, and developed strong tics for several months, with some OCD behaviors (slight). The doctor suggested PANDAS, had him on antiobiotics for 10 days. He slowly improved, and has been doing great for several months now. We have been ever so thankful to god for healing him. In the last month, he has had 2 sore throats. Both times, I took him to the dr. and they did the strep test. Negative. So tonight he started this new ocd behavior (again, slight at this point, but clearly ocd type behavior). What alarmed me most was that he was aware of the anxiety he felt and the need to "do" what he needed to do. he said he was afraid to tell me about it b/c he thought I would take him to the dr. :-( I reassured him that he was ok, and he went back to playing. Later I saw him "doing" his ocd thing. What can I do? I worry that he has strep even though the tests were negative. I am going back to the dr. tomorrow to ask for antibiotics regardless of the test results. He had a bad (hyperactive) reaction to Augmentin last year, so what antiobiotic would be best? How much and how long is usually recommended for PANDAS? I am so worried about him and I am afraid that I won't do the right thing. I have never posted to one of these sites (I don't even do facebook or myspace), so I am hopeful that someone sees this and replies. Any advice would be greatly appreciated. LMAMA Well, I don't know what kind of reaction your son had to the augmentin, but it is known to cause a rash in people who have epstein barr virus (which can also cause a sore throat). But also, it seems like sometimes kids get PANDAS like reactions from triggers other than strep, anything that activates the immune system. It seems like strep is the initial sensitizing agent, but many PANDAS kids do have symptom exacerbations from any illness. While on the augmentin he got really hyper and aggressive, which is NOT at all like him. He was jumping and hitting and out of control. This went on for the 2 days he was on it, and then when we switched to a different one, the hyperactivity went away. I assumed it was the augmentin. Link to comment Share on other sites More sharing options...
T_Mom Posted July 1, 2009 Report Share Posted July 1, 2009 LMama, Welcome, I am sorry you are dealing with this as well. It sounds like you are on the right track--I would do just what you are doing. Shaesmom's suggestion of the 72 hour culture for strep is a good one, also the bloodwork, and regardless of the results if I were you I would do just what you said--try a course of antibiotics to see if they make a difference. If they do then you can decide what is next. With the antibiotics I would also do probiotics (we use drinks such as "good belly"), vitamin C, and D, and omegas. On Dr K.s website he has a note there that in his experience, if PANDAS is caught early enough antibiotics alone may "cure" the child. www.webpediatrics.com Nevertheless, if antibiotics DO have an effect than that is a hopeful sign that there is "treatment" for the symptoms. Good job being on top of this so early in the course of the symptoms-- Best, T.Mom Link to comment Share on other sites More sharing options...
LMama Posted July 1, 2009 Author Report Share Posted July 1, 2009 Thank you! I Does anyone know of the best antibiotic to use and what dose works best? Wow! I can't believe there are so many of you out there (and awake!) at this hour! Thank you all for your responses! LMAMA Link to comment Share on other sites More sharing options...
T_Mom Posted July 1, 2009 Report Share Posted July 1, 2009 We have used Amoxicillan with good results--though some have used it "for a while" and then had to go to Zithromax (stronger.) I suspect we will as well at some point. Augmentin is also used by some...and others. It may help to follow the course of some of the children's illnesses by reading the posts that parents have made over time. (I have found this very helpful.) Just click on the person's name, and then "Options" then "Find Member's Posts" and all posts show up-- In our case we gave a 10 day dose of Amoxicillan for colds accompanied by OCD/tics 4 times within 6 months. Each time she would get ill and accompanying OCD symptoms returned soon after stopping the Amox. Finally last January we tried a month of it--and the response was very positive, so have continued, full strength since then...My daughter was very crippled by sudden onset OCD though--I hope your son may "clear" with a regular 10 day course of therapeutic dose antibiotics the first time. Blessings-- T. Link to comment Share on other sites More sharing options...
LMama Posted July 1, 2009 Author Report Share Posted July 1, 2009 It may help to follow the course of some of the children's illnesses by reading the posts that parents have made over time. (I have found this very helpful.) Just click on the person's name, and then "Options" then "Find Member's Posts" and all posts show up-- Thank you! All of your info was super helpful, and I will take that info to the dr. tomorrow. Also, thank you for the info on how to follow specific posts. I did not know how to do that! Many thanks. I am glad also that your daughter is doing better. I pray that all of our kids get 100% better! LMAMA Link to comment Share on other sites More sharing options...
peglem Posted July 1, 2009 Report Share Posted July 1, 2009 My 5 and a half year old son had strep throat a year ago, and developed strong tics for several months, with some OCD behaviors (slight). The doctor suggested PANDAS, had him on antiobiotics for 10 days. He slowly improved, and has been doing great for several months now. We have been ever so thankful to god for healing him. In the last month, he has had 2 sore throats. Both times, I took him to the dr. and they did the strep test. Negative. So tonight he started this new ocd behavior (again, slight at this point, but clearly ocd type behavior). What alarmed me most was that he was aware of the anxiety he felt and the need to "do" what he needed to do. he said he was afraid to tell me about it b/c he thought I would take him to the dr. :-( I reassured him that he was ok, and he went back to playing. Later I saw him "doing" his ocd thing. What can I do? I worry that he has strep even though the tests were negative. I am going back to the dr. tomorrow to ask for antibiotics regardless of the test results. He had a bad (hyperactive) reaction to Augmentin last year, so what antiobiotic would be best? How much and how long is usually recommended for PANDAS? I am so worried about him and I am afraid that I won't do the right thing. I have never posted to one of these sites (I don't even do facebook or myspace), so I am hopeful that someone sees this and replies. Any advice would be greatly appreciated. LMAMA Well, I don't know what kind of reaction your son had to the augmentin, but it is known to cause a rash in people who have epstein barr virus (which can also cause a sore throat). But also, it seems like sometimes kids get PANDAS like reactions from triggers other than strep, anything that activates the immune system. It seems like strep is the initial sensitizing agent, but many PANDAS kids do have symptom exacerbations from any illness. While on the augmentin he got really hyper and aggressive, which is NOT at all like him. He was jumping and hitting and out of control. This went on for the 2 days he was on it, and then when we switched to a different one, the hyperactivity went away. I assumed it was the augmentin. I just checked rxlist.com and that is listed as a rare side effect and it does sound like it was caused by the augmentin. Wonder why? Link to comment Share on other sites More sharing options...
LMama Posted July 1, 2009 Author Report Share Posted July 1, 2009 Wow! When he acted that way, I just knew it was a side effect, but the pharmacist tried to dismiss it. The I just called the dr. and had them switch him to something else. No one ever told me that itreally WAS a side effect! The dr. suggested that maybe it was the artifical sweetner in the medicine. Link to comment Share on other sites More sharing options...
T_Mom Posted July 1, 2009 Report Share Posted July 1, 2009 Wow! When he acted that way, I just knew it was a side effect, but the pharmacist tried to dismiss it. The I just called the dr. and had them switch him to something else. No one ever told me that itreally WAS a side effect! The dr. suggested that maybe it was the artifical sweetner in the medicine. LMama, It is late so that may well be affecting my memory! ...but I think there may be a connection between augmentin and amoxicillan--best check on that before trying amoxicillan, just to be sure! All the best, and I am turning in now-- T:) Link to comment Share on other sites More sharing options...
michele Posted July 1, 2009 Report Share Posted July 1, 2009 My son responded in a similar way to liquid meds that had dyes in them. If it was red that may be the case. We did liquid Omnicef for awhile and it was fine but the pen vk was red I believe and the augmentin maybe. It could be the sugar also because our kids are sensitive to artificial sweetners. If he can swallow pills you will see less side effects. Although our Omnicef is a blue pill and I even questioned that affecting him. Most of us try to avoid food dyes because of their weird reaction especially the hyperness. Wow! When he acted that way, I just knew it was a side effect, but the pharmacist tried to dismiss it. The I just called the dr. and had them switch him to something else. No one ever told me that itreally WAS a side effect! The dr. suggested that maybe it was the artifical sweetner in the medicine. Link to comment Share on other sites More sharing options...
ShaesMom Posted July 1, 2009 Report Share Posted July 1, 2009 It is my understanding that Augmentin is Amoxicillian with another ingredient added to make it a little stronger. Link to comment Share on other sites More sharing options...
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