PANDAS returns...

[trubiano]

Let me first say thank you to everyone who has helped us get to the point we are at. I came to this forum 4 months ago in tears looking for answers that I was not getting from the 6 doctors we had been sent to. I won't repeat our entire story, you can click on my name to read. I have a 6 year old son who has PANDAS. I was lucky to get the diagnosis. He gets a Bicillian Injection every three weeks to help keep the strep away, I put him on Omega 3, and a multivit. After finding this site I learned about Cal Lac which was great! His vocal/physical tics are pretty much gone. His OCD, hypersensitivity, and behavior outbursts went away! Until this week... It would have to be the week before school and here comes the crying fits, the need to touch everything he passes, and the confusion. I have been prepared with articles on information to give to the teacher, but now that he is in a "relapse" what do I do?? We are blessed that the tics have not returned! The Neurologist keeps pushing Clonadine(BP med) on us. She says it will "calm" the OCD and help him in school. From what I read it will put him asleep! I'm hoping some one knows of a natural way I can help him. We just need something that will have a calming effect and help him to be able to sit and concentrate in class. Everything I read said PANDAS will come and go. We had such a great month. A little part of me thought this would just go away. One more question I have. He has become afraid of being anywhere but home. We took him to a Dairy Farm and as soon as we got there he kept asking when it was time to leave. Same with a park, an inflaitable gym, and let me tell you an amusment park(BIG MISTAKE). All these places he begged to go. It's we get there he gets really nervous. My husband thinks we should push him to get out and do new things. Are we making things worse by putting him in situations that cause stress? Again, I want to thank all of you! We need to have a big family reunion somewhere just so I can hug all of you!

[Cum Passus]

trubiano,

 

I'm so sorry you are going through this. I don't know much about PANDAS other then it seems so much like TS. I was wondering how old your son is? I could not remember. I have been dealing with my son's nervousness for about 2 years. It seem to start when we put him in pubic school. He didn't have any problems when we homeschooled him. I think if your son is having some pretty severe stress I would not try the new thinks just yet. Your son might be thinking about school already. It seemed to me my son started to worry about school last year in early Aug. He did not calm down until Nov. You might be able to do what your husband suggests after a few weeks of school is under way. Hang in there Aug is a stressful month for moms and dads.

 

((((((hugs to you too))))))))

C.P.

[trubiano]

trubiano,

 

I'm so sorry you are going through this. I don't know much about PANDAS other then it seems so much like TS. I was wondering how old your son is? I could not remember. I have been dealing with my son's nervousness for about 2 years. It seem to start when we put him in pubic school. He didn't have any problems when we homeschooled him. I think if your son is having some pretty severe stress I would not try the new thinks just yet. Your son might be thinking about school already. It seemed to me my son started to worry about school last year in early Aug. He did not calm down until Nov. You might be able to do what your husband suggests after a few weeks of school is under way. Hang in there Aug is a stressful month for moms and dads.

 

((((((hugs to you too))))))))

C.P.

 

 

Thank you CP! My son is 6. I have a meeting with his teacher set up for Monday. I'm hoping she will be understanding, but also firm to keep him on track.

[Chemar]

Hi trubiano

 

it is likely that your child may again have been exposed to strep and that the antibody titres are up

 

Has you doc ever suggested azithromycin? (zithromax) It just seems from what is reported here that it has a more effective track record

 

re the OCD:(which, as you know, is a symptom of PANDAS)

the safest supplement to try for OCD is INOSITOL (one of the B vitamins)

 

Methionine( also available as samE) is also veru good for OCD

 

5HTP is very effective for boosting serotonin levels, but should be used with caution as it can make some feel very edgy

 

Honestly, if you are finding that your child is not doing well at crowded or exciting activities, limit or exclude them

 

We learned early on in our TS journey that we were going to have to make adaptations (we hardly ever go to the cinema as that is a big tic trigger for my son, and he never swims in chlorinated pools anymore for the same reason)

 

hope you manage to get things back into waning mode before school starts

Cheri

[Dedee]

I just wanted to add that as the previous poster said, even though he is covered by antibiotics he can still get strept. So I would get him tested. Also, a couple of things to consider: of course one is just the stress of starting school. Another is that your son could have been exposed to strept without actually acquiring it, and still cause an increase in his symptoms. My sons physician said that some of his on again / off again issues are related to him being exposed to my other children when they have strept. Even thought he does not "officially" have strept, his body is so sensitized to it that it will cause his immune system to react and is antibodies will increase and cause him to have symptoms. Looking back, I do believe this has been true. I will be much more careful this winter about my other children and their proximity to him when they are sick. Just wanted to throw that in. Good Luck. Starting school is hard on the whole family.

 

Dedee

[trubiano]

Hi trubiano

 

it is likely that your child may again have been exposed to strep and that the antibody titres are up

 

Has you doc ever suggested azithromycin? (zithromax) It just seems from what is reported here that it has a more effective track record

 

re the OCD:(which, as you know, is a symptom of PANDAS)

the safest supplement to try for OCD is INOSITOL (one of the B vitamins)

 

Methionine( also available as samE) is also veru good for OCD

 

5HTP is very effective for boosting serotonin levels, but should be used with caution as it can make some feel very edgy

 

Honestly, if you are finding that your child is not doing well at crowded or exciting activities, limit or exclude them

 

We learned early on in our TS journey that we were going to have to make adaptations (we hardly ever go to the cinema as that is a big tic trigger for my son, and he never swims in chlorinated pools anymore for the same reason)

 

hope you manage to get things back into waning mode before school starts

Cheri

My Ped discussed antibiotics with the Neurologist and the Cardiologist(first diagnosis was syndenhams chorea) and the three thought the Bicillian was best. After reading posts on here I asked again about changing the antibiotic and the Ped said that the injection worked best for targeting strep. We have another visit in a couple of weeks and I will tell her again. Can you tell me how the azithromycin should be given? Is it everyday? Thank you for the OCD vitamin ideas. I'm heading to the store tonight!

[trubiano]

I just wanted to add that as the previous poster said, even though he is covered by antibiotics he can still get strept. So I would get him tested. Also, a couple of things to consider: of course one is just the stress of starting school. Another is that your son could have been exposed to strept without actually acquiring it, and still cause an increase in his symptoms. My sons physician said that some of his on again / off again issues are related to him being exposed to my other children when they have strept. Even thought he does not "officially" have strept, his body is so sensitized to it that it will cause his immune system to react and is antibodies will increase and cause him to have symptoms. Looking back, I do believe this has been true. I will be much more careful this winter about my other children and their proximity to him when they are sick. Just wanted to throw that in. Good Luck. Starting school is hard on the whole family.

 

Dedee

Thank you Dedee! Are they giving your son antibiotic on a regular basis? I was hoping keeping the medication in his system would keep the strep away! I guess not. He has an injection tomorrow and I will have his throat swabbed.

[Ronnas]

My son is 11 years old and about 80 pounds. He takes 500 mg azithromycin every 5 days. Azithromycin has a longer half life than other antibiotics therefore once every 5-7 days is fine. He has been on azithromycin for about 16 months and really has done very, very well on it, unbelievable actually given the 4 years prior to the azithromcin. Hope this helps. Ronna

[ad_ccl]

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

[michele]

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

 

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles?

Thanks,

Michele

[PANDAS_Denmark]

Hi Michele -

 

So sorry to hear about your troubles !

My 6 year old son with PANDAS has been on penicillin V prophylaxis for half a year, too - with no results at all. He kept getting strep.infections of all kinds, "even though" the doctors kept telling, that it shouldn´t be possible.

Not till he was really sick with both strep throat and impetigo at once, they were willing to realise, that it is indeed possible (because of betalactamase) !

After that he has been on Amoxicillin-/Spectramoxprophylaxis for a few month. The first month it seemed with good result, but after that it seemed it didn´t work anymore.

Now he is on Azithromycin, based on the good experiences described on this forum. I hope and pray, it will work.

 

Concerning school articles : I´ve find a lot of the materials found here very, very good : http://www.tourettesyndrome.net/education.htm.

As you write yourself, many people just see the behaviour/problems of our kids as poor discipline, and will treat them according to this. That´s why I have chosen myself, to tell the "school", that is both teachers and parents, about my sons disease and symptoms. In this connection I have found it usefull to explain PANDAS as "a modern variant of rheumatic fever", that most people know about, "only" with other and more complex symptoms : Tics and OCD. My son has told his classmates himself about "his PANDAS", that "teases him sometimes" : "making me tic or even do things, I don´t even want to do". Everybody has reacted with great concern, and do their best to help my son.

 

Best wishes -

PANDAS_Denmark

[trubiano]

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

 

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles?

Thanks,

Michele

I didn't know the repeating and talking nonstop was also from the PANDAS! He has been driving us nuts. If there is any little sound when he is talking he has to repeat the whole sentence. It will take him saying the sentence 5 times until he can get it out. I had a meeting with his teacher before school started and was VERY happy to hear her 10 year old son has asperger's. Not happy for her, but happy that she understands the hypersensitivity, emotional issues, and OCD we are dealing with. She also refused medications for her son. I was afraid the school would try and push that on us when his symptoms flared. Are the PCN pills very large? We have had trouble getting him to swallow pills. We are practicing with M&M's, he gets a little freaked out about it. Thank you for your post! I will look into the child calm. If there is anything that ends up helping us in school I will let you know. I'm not sure if they have it where you live, but I was made aware in Georgia they have "teams" that will get together with you and a few special teachers and come up with a plan to help my son get through classtime. If they have to sit with him to help him focus or take him to the library to do testing/tutoring they will. My son is like yours. He is a little sponge. He was in K last year, but went to 1st grade reading and math. Strange thing is he has trouble cutting on a straight line and still can not understand how to tie his shoes. Thank you again!

[michele]

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

 

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles?

Thanks,

Michele

I didn't know the repeating and talking nonstop was also from the PANDAS! He has been driving us nuts. If there is any little sound when he is talking he has to repeat the whole sentence. It will take him saying the sentence 5 times until he can get it out. I had a meeting with his teacher before school started and was VERY happy to hear her 10 year old son has asperger's. Not happy for her, but happy that she understands the hypersensitivity, emotional issues, and OCD we are dealing with. She also refused medications for her son. I was afraid the school would try and push that on us when his symptoms flared. Are the PCN pills very large? We have had trouble getting him to swallow pills. We are practicing with M&M's, he gets a little freaked out about it. Thank you for your post! I will look into the child calm. If there is anything that ends up helping us in school I will let you know. I'm not sure if they have it where you live, but I was made aware in Georgia they have "teams" that will get together with you and a few special teachers and come up with a plan to help my son get through classtime. If they have to sit with him to help him focus or take him to the library to do testing/tutoring they will. My son is like yours. He is a little sponge. He was in K last year, but went to 1st grade reading and math. Strange thing is he has trouble cutting on a straight line and still can not understand how to tie his shoes. Thank you again!

 

How interesting you used the word freaked out. I asked my son why he repeatedly bends back his fingers and he said because he is freaked out! Whatever that means to a five year old. Andrew drives us nuts with the repeating phrases too. My eleven year old will cover his mouth and beg him to stop talking. Does your son stretch his fingers or bend at the knees? I find this odd but it must give him a relaxed feeling. Andrew is very emotional too. Today he has cried alot over little things. He is complaining of a headache. I've had him on time out twice because he has been mean and refused to listen. How does your son do with the diet? Andrew craves sweets. I try to eliminate dies and colors. We try to stay away from candy. He has no allergies that we know of. My mother-in-law took him Wed. and bought him alot of candy and junk food. Took him to a movie and bought him a Webkinz. He has been off the wall for two days. My husband refuses to explain it to his family. They won't even accept the ADHD. Does giving into these obsessions just make them worse. He tries to collect all of things. He just can't stop thinking and talking about it either. It goes beyond a usual interest. He finds it hard to drive by the stores that sell them without stopping to look or getting the Happy meals to collect the toys. It is nice to share with someone else.Thanks for listening.

Michele

[trubiano]

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

 

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles?

Thanks,

Michele

I didn't know the repeating and talking nonstop was also from the PANDAS! He has been driving us nuts. If there is any little sound when he is talking he has to repeat the whole sentence. It will take him saying the sentence 5 times until he can get it out. I had a meeting with his teacher before school started and was VERY happy to hear her 10 year old son has asperger's. Not happy for her, but happy that she understands the hypersensitivity, emotional issues, and OCD we are dealing with. She also refused medications for her son. I was afraid the school would try and push that on us when his symptoms flared. Are the PCN pills very large? We have had trouble getting him to swallow pills. We are practicing with M&M's, he gets a little freaked out about it. Thank you for your post! I will look into the child calm. If there is anything that ends up helping us in school I will let you know. I'm not sure if they have it where you live, but I was made aware in Georgia they have "teams" that will get together with you and a few special teachers and come up with a plan to help my son get through classtime. If they have to sit with him to help him focus or take him to the library to do testing/tutoring they will. My son is like yours. He is a little sponge. He was in K last year, but went to 1st grade reading and math. Strange thing is he has trouble cutting on a straight line and still can not understand how to tie his shoes. Thank you again!

 

How interesting you used the word freaked out. I asked my son why he repeatedly bends back his fingers and he said because he is freaked out! Whatever that means to a five year old. Andrew drives us nuts with the repeating phrases too. My eleven year old will cover his mouth and beg him to stop talking. Does your son stretch his fingers or bend at the knees? I find this odd but it must give him a relaxed feeling. Andrew is very emotional too. Today he has cried alot over little things. He is complaining of a headache. I've had him on time out twice because he has been mean and refused to listen. How does your son do with the diet? Andrew craves sweets. I try to eliminate dies and colors. We try to stay away from candy. He has no allergies that we know of. My mother-in-law took him Wed. and bought him alot of candy and junk food. Took him to a movie and bought him a Webkinz. He has been off the wall for two days. My husband refuses to explain it to his family. They won't even accept the ADHD. Does giving into these obsessions just make them worse. He tries to collect all of things. He just can't stop thinking and talking about it either. It goes beyond a usual interest. He finds it hard to drive by the stores that sell them without stopping to look or getting the Happy meals to collect the toys. It is nice to share with someone else.Thanks for listening.

Michele

It seems like our children are the same! My son just started cracking his fingers on his head. I'm not sure if it is a tic or what. He will hit his hand on the side of his head and says he is "stretching his fingers". We deal with collecting too! If he gets one race car he needs every number, webkinz.com announces the new ones coming out and he must have them all, and he got a Simpson toy this week and he has begged everytime he plays with it to go back and get more from Burger King. I also have an older son who likes to interrupt when he talks. He thinks it is funny to make him start a sentence over. There has to be something more we can do. I have not limited his diet yet. We went June and July without any major symptoms. I was hoping the diagnosis was wrong and he was back to normal. As for giving in to what they want, when this first started we took him to a psychologist and she told him everytime he felt like doing something (ex: touching the hot stove) he needed to stop himself and tell us that he wanted to do it. We give him a coin and when he gets five he can have a toy of his choice for his collections. She said this would teach him to fight the OCD urges. So far it has worked. He had an issue with needing to lick things. He would come up to us 100 times a day telling us things he wanted to lick. Thank goodness that has gone! My husband thinks I baby him and that is why he is so emotional. Who has ever seen a 6 year old laying on the ground in a crying fit not being able to calm himself for 30 minutes? So, I understand about your family thinking there is nothing wrong. They are not around enough to hear him repeat something funny he has seen on tv over and over again all week long! As for the headache I would call your neurologist just incase. When my son was at his worst it was a headache and tummy ache that would not go away that made the doctors listen to me when I said something was wrong. It could be strep again. Especially with his behavior changes. My son's MRI showed some swelling, but after all the high doses of antibiotics in the beginning it is normal now.

[michele]

Just wanted to add- azithromycin is not just used for preventing the infection but it also has an immuno modulating effects - which is why I am guessing it works so well with PANDAS kids. I would check his titers for sure ( do not rely just on the swab - since he is already on antibiotics there is a good chance you would get a false result). He could just have another infection or something else bugging his immune system causing the symptoms. It is good his symptoms are not quite as severe - you said no tics this time. I like to think that means his body is managing this assault on his immune system a little better than it did the last time. My son is on the same dose as Ronna's. He is 9 now.

 

My son is six and has PANDAS also. However he gets symptoms when exposed to viral things too. For example last week myself, my daughter and my mom all had laryngitis and sore throats. It was better in a few days and he never got it but he started finger cracking again. We have him on Penicillin V prophylaxis twice a day tablets only because the liquid is red 40. He did not get sick but started acting more ADHD and emotional. Also he started having the urgency to urinate. He gets some mild OCD like repeating things (right now it is WEbkinz collection) and talking nonstop. I am yet to find a Dr. who will diagnose PITANDS. They say the research/documentation is limited on it. Also the Dr. wanted penicillin because the majority of research for PANDAS lists Penicillin as the best medicine and again he goes by documentation. I also give Andrew a drop of Calm Child two-three times a day. It seems to settle his hyperness for a while. I also think he is nervous. He will also begin school soon too. I think he will have some seperation anxiety. He did not like preschool and clung to me on the days. He is so smart like a little sponge but I wonder how he will do with the sitting and following along. Plus his fine motor is behind like writing his name and numbers. I tried the Epsom baths and they helped settle him at bedtime. Also the Cod oils and probiotics and a good vitamin seem to be helping some. Hope this helps others. I guess we are going through a similar situation. You know what I hear the most from people is that he is just a boy and I am used to girls. Other people don't see it which I guess is good for him. They probably just see it as poor discipline. I wonder what the school will think. Can someone post any good school articles?

Thanks,

Michele

I didn't know the repeating and talking nonstop was also from the PANDAS! He has been driving us nuts. If there is any little sound when he is talking he has to repeat the whole sentence. It will take him saying the sentence 5 times until he can get it out. I had a meeting with his teacher before school started and was VERY happy to hear her 10 year old son has asperger's. Not happy for her, but happy that she understands the hypersensitivity, emotional issues, and OCD we are dealing with. She also refused medications for her son. I was afraid the school would try and push that on us when his symptoms flared. Are the PCN pills very large? We have had trouble getting him to swallow pills. We are practicing with M&M's, he gets a little freaked out about it. Thank you for your post! I will look into the child calm. If there is anything that ends up helping us in school I will let you know. I'm not sure if they have it where you live, but I was made aware in Georgia they have "teams" that will get together with you and a few special teachers and come up with a plan to help my son get through classtime. If they have to sit with him to help him focus or take him to the library to do testing/tutoring they will. My son is like yours. He is a little sponge. He was in K last year, but went to 1st grade reading and math. Strange thing is he has trouble cutting on a straight line and still can not understand how to tie his shoes. Thank you again!

 

How interesting you used the word freaked out. I asked my son why he repeatedly bends back his fingers and he said because he is freaked out! Whatever that means to a five year old. Andrew drives us nuts with the repeating phrases too. My eleven year old will cover his mouth and beg him to stop talking. Does your son stretch his fingers or bend at the knees? I find this odd but it must give him a relaxed feeling. Andrew is very emotional too. Today he has cried alot over little things. He is complaining of a headache. I've had him on time out twice because he has been mean and refused to listen. How does your son do with the diet? Andrew craves sweets. I try to eliminate dies and colors. We try to stay away from candy. He has no allergies that we know of. My mother-in-law took him Wed. and bought him alot of candy and junk food. Took him to a movie and bought him a Webkinz. He has been off the wall for two days. My husband refuses to explain it to his family. They won't even accept the ADHD. Does giving into these obsessions just make them worse. He tries to collect all of things. He just can't stop thinking and talking about it either. It goes beyond a usual interest. He finds it hard to drive by the stores that sell them without stopping to look or getting the Happy meals to collect the toys. It is nice to share with someone else.Thanks for listening.

Michele

It seems like our children are the same! My son just started cracking his fingers on his head. I'm not sure if it is a tic or what. He will hit his hand on the side of his head and says he is "stretching his fingers". We deal with collecting too! If he gets one race car he needs every number, webkinz.com announces the new ones coming out and he must have them all, and he got a Simpson toy this week and he has begged everytime he plays with it to go back and get more from Burger King. I also have an older son who likes to interrupt when he talks. He thinks it is funny to make him start a sentence over. There has to be something more we can do. I have not limited his diet yet. We went June and July without any major symptoms. I was hoping the diagnosis was wrong and he was back to normal. As for giving in to what they want, when this first started we took him to a psychologist and she told him everytime he felt like doing something (ex: touching the hot stove) he needed to stop himself and tell us that he wanted to do it. We give him a coin and when he gets five he can have a toy of his choice for his collections. She said this would teach him to fight the OCD urges. So far it has worked. He had an issue with needing to lick things. He would come up to us 100 times a day telling us things he wanted to lick. Thank goodness that has gone! My husband thinks I baby him and that is why he is so emotional. Who has ever seen a 6 year old laying on the ground in a crying fit not being able to calm himself for 30 minutes? So, I understand about your family thinking there is nothing wrong. They are not around enough to hear him repeat something funny he has seen on tv over and over again all week long! As for the headache I would call your neurologist just incase. When my son was at his worst it was a headache and tummy ache that would not go away that made the doctors listen to me when I said something was wrong. It could be strep again. Especially with his behavior changes. My son's MRI showed some swelling, but after all the high doses of antibiotics in the beginning it is normal now.

 

Wow do our boys have similarities. Andrew licks odd things too. Like today he licked the door brass inside lock. Sometimes he licks shoe bottoms. It is so gross. The urge thing is interesting. I have never discussed it with Andrew. With the crying fits we also experience them. I describe them as age regression. He acts like a two year old toddler. Actually he was better behaved at two. I kept thinking the diagnosis was wrong too. But when you see the behaviors repeat themselves over and over with time and illness they are so extreme that you can mark a day on the calandar that they begin. My mom thinks we gave into him too often so we didn't have to hear him scream. Maybe sometimes but I put up with a lot of screming too. The Burger King thing is hilarious. My son always wants a different toy. So when they give him the same he wants to trade it back in. He doesn't get that A .they don't care if they give the same toy aand B. they really don't know what the toys are. He will have crying fits for an hour because he wants to return the toy. One time I sent him in to return it when it was the same Superman toy. He got something else. They say collect them all but he takes it literally. We are visiting a DAN Dr. Dr. Demio next week for the first time. I don't know what to expect. He definately has something going on right now.

Michele