PANDAS and school

[heveritt1]

I do kind of regret bringing this to the school attention before school started. I did feel like he had a microscope on him all the time an he was in trouble ALL the time. I am not the best at this, but we have to fight for out little ones. The principal was talking to me about his anger issues at school, weather he is doing some things on purpose or instinct. I told her that he never had this type of behaviour before goign to public school, and the first 2 weeks of school at a schoolwide picnic I saw a boy punching my son. Then a couple of weeks after that, in the lunch room I saw the same boy punch my son in the stomach right in front of me. She kind of dropped it after that, for now. His new teacher has so much autism experience so that has been a huge help. I think he still has the same problems with focusing and following direction, but maybe she works with him differently. We get more good days than bad now and I think that makes him feel so much better. I think he had some foods that are not on his list, so today might be a different story. I could tell this morning he was different, angry again. And when we pulled up in the school carpool line he was panicking to get out and go to the bathroom. I hope this is not going to be another episode of PANDAs.

 

About the tennex, we were given this a year ago. I used it when thing got really bad at the beginnning of the school year. He fell asleep in class. It was so sad, but also sad to see him blink so much and the kids were saying things to him. It never seemed to help with the tic, it just helps calm his nerves. I still keep it around, because he sometimes gets so hyped up for days when he starts the blinking that he can rest. he use to tell me his wished his brain could jump out of his head.

 

 

Back to my first paragraph, we tried to move him to a private school for a calmer environment and we made the mistake of telling him. Needless to say, he was not excepted. Once you have a bad behavior rap at school it is hard to get them into a private since the teacher has to fill out a behavior survey about the kids.

[michele]

Oh my. I am not sure on the tennex either. Today Andrew was so good at the store. No fits and he stayed right with me. Maybe with age some of these emotional attention issues will disappear. Did they give you the tennex for the blinking or for the attention? Did it make him tired even on the smallest dose? How sad. We are doing good on the tics for now and the OCD so maybe I should hold off. It may make it worse right? Does your son get bullied? I would talk to the counselor. They can go into the classroom and discuss bullying in general for everyone to hear. I know when an episode is coming on the bathroom frequency is the first sign along with the emotional behaviors and compulsiveness. I have seen such improvements with the Omnisef. He very rarely gets the episode on the antibiotic. Today the school called and reported another case of strep in the classroom. This is the third time. He has not gotten the strep just minor symptoms of attention trouble. What a long winter this has been. That makes me upset your son couldn't get into the private school because of the teacher's report. Shame on her! I am also a teacher and I think some of them need some training on ADD and meeting students individual needs while not destroying their self-esteems.

 

Michele

 

I do kind of regret bringing this to the school attention before school started. I did feel like he had a microscope on him all the time an he was in trouble ALL the time. I am not the best at this, but we have to fight for out little ones. The principal was talking to me about his anger issues at school, weather he is doing some things on purpose or instinct. I told her that he never had this type of behaviour before goign to public school, and the first 2 weeks of school at a schoolwide picnic I saw a boy punching my son. Then a couple of weeks after that, in the lunch room I saw the same boy punch my son in the stomach right in front of me. She kind of dropped it after that, for now. His new teacher has so much autism experience so that has been a huge help. I think he still has the same problems with focusing and following direction, but maybe she works with him differently. We get more good days than bad now and I think that makes him feel so much better. I think he had some foods that are not on his list, so today might be a different story. I could tell this morning he was different, angry again. And when we pulled up in the school carpool line he was panicking to get out and go to the bathroom. I hope this is not going to be another episode of PANDAs.

 

About the tennex, we were given this a year ago. I used it when thing got really bad at the beginnning of the school year. He fell asleep in class. It was so sad, but also sad to see him blink so much and the kids were saying things to him. It never seemed to help with the tic, it just helps calm his nerves. I still keep it around, because he sometimes gets so hyped up for days when he starts the blinking that he can rest. he use to tell me his wished his brain could jump out of his head.

 

 

Back to my first paragraph, we tried to move him to a private school for a calmer environment and we made the mistake of telling him. Needless to say, he was not excepted. Once you have a bad behavior rap at school it is hard to get them into a private since the teacher has to fill out a behavior survey about the kids.

[trubiano]

So far so good!! We went with the positive reinforcement and I'm sure your children are like mine and they collect everything! So, we tried two different things and it is working. If my son gets his table work done with in the 30 minutes they are given he can pick a book from his favorite series to read at his desk the rest of the class time. I went and bought the whole series, so he was so excited to have the collection! Then for at home, if he finishes his table work everyday, on Friday I told him he could go and pick out a new Webkinz toy. This excited him so much that I can't get him to stop looking on the computer planning which ones he is going to get every week. I just pray this keeps working until summer comes! I saw our Ped today and she is willing to do a "food allergy" test on him. Is there something I should ask for or will this cover everything? Thank you again for all your help.

[michele]

Trubiano,

All I could say was Oh my gosh! Your son sounds like a clone of mine. The collections and the Webkinz addiction. My son sits on the computer and looks up those things too! Good thinking on the positive reinforcement. My only concern is, are we giving into the addictions when we keeping buying the things they obsess over. (I love the book ideas though) I struggle with this daily. My son has collections galore and we are always buying more. He has bins and bins of little toys. Does this make the compulsion worse? It is like we feed the addiction. Do you ever worry about this? Thanks for sharing your strategy. I hope it continues to work with school.

 

Michele

So far so good!! We went with the positive reinforcement and I'm sure your children are like mine and they collect everything! So, we tried two different things and it is working. If my son gets his table work done with in the 30 minutes they are given he can pick a book from his favorite series to read at his desk the rest of the class time. I went and bought the whole series, so he was so excited to have the collection! Then for at home, if he finishes his table work everyday, on Friday I told him he could go and pick out a new Webkinz toy. This excited him so much that I can't get him to stop looking on the computer planning which ones he is going to get every week. I just pray this keeps working until summer comes! I saw our Ped today and she is willing to do a "food allergy" test on him. Is there something I should ask for or will this cover everything? Thank you again for all your help.

[CSP]

michele,

 

I can only speak for my family, but I have seen a turn around in my children, with anything material. I saw at first changing their life style was hard, but it really only took a couple weeks for them to get over it. My kids don't ask to play on the computer anymore, watch TV, ect... They really are at peace, and we see it, and feel it at home.

 

My youngest would be the only one to know what a webkin is, and she does not play with them. I work at a store that sells webkins. I have to say, I have never seen parent get so anoid with their children then when they are in the store to buy one. I would think if you want to buy your child a toy it would be something you both get joy out of. Parents yell at their kids and then complain how much money they have spent on these toys and all the accessories. It is so sad.

 

Just two weeks ago, my 16yo said, what she sees in school, and what she hears about, and how teenagers act, she felt the world needed some kind of financial collapse. Those words spoke volumes to me coming from a young woman. Kind of scared me, but if that did happen I could see how our children would help make something like that much easier for us to endure.

 

 

C.P.

[faith]

"Et tu Brutis"!!

 

oh no, I have to see the word webkinz here too?!! ..........I guess they ARE taking over the world.

 

 

BTW, I don't think its just our kids with obsessive issues that like these things and collections, my son has other friends who do the same thing. Every time a new one comes out, there's someone going "I got the bla bla bla webkin today" ... or I hear "so and so has SIXTY-THREE webkins!" .. (I am up to 11 and counting).

 

Have a fun day!

Faith

[trubiano]

We have been really careful with buying to many things. Our psychologist told us if something new is coming in something old needs to go out. I have let him list things on ebay and drop things off at our local Goodwill. I thought it would be hard, but when he gets to take his money earned to the bank and put it in his savings it excites him. I do not complain about taking him to buy more webkins or books because then I would be complaining about him behaving and focusing that week. The only time I am giving into his wants are when he is changing a behavior for the better.

[michele]

Good for you! That is excellent the lessons you are teaching him! I try not to buy much outside of birthdays or holidays but... I have inlaws that are all about materialism and buying the kids love. They believe in buying the biggest gifts for every holiday and birthday or just because that the store has. It has made us feel like our house is too small and we have a large four bedroom house. I feel like we are busting at the seams and we have a finished basement with two storage rooms! They get joy out of buying for their grandkids. It does seem to feed into his fascination with collections though. They have bought him over twenty of those die cast Nascar cars and they are the collectors editions. I should have him give some toys away to Goodwill. That is an excellent idea. I bought one of those storge shelves with the bins at Target and filled every bin immediately with figures and Happy Meal toys. He does play with them but enough is enough!

 

Michele

 

 

We have been really careful with buying to many things. Our psychologist told us if something new is coming in something old needs to go out. I have let him list things on ebay and drop things off at our local Goodwill. I thought it would be hard, but when he gets to take his money earned to the bank and put it in his savings it excites him. I do not complain about taking him to buy more webkins or books because then I would be complaining about him behaving and focusing that week. The only time I am giving into his wants are when he is changing a behavior for the better.

[bcase]

During this most recent bout of tics, I notice she does it much more when she is watching television. But much less when she is on the computer playing a computer game.

[emma1]

I think -- if I had the opportunity to do it again -- I wouldn't tell the school. I know that sounds crazy, as certainly I thought I would tell them and they would offer additional asistance to my daughter, especially since she had always done well previously and is basically a sweetheart. However, I think what happened is the various teacher's talked among themselves (this IS high school afterall), and then put my daughter under the microscope. It is kind of the opposite of making a good first impression. Now, everything is looked at more critically. I tried to go back in, and "fix" any misperceptions, but it was clear that the damage was done.

[kim]

I think we all probably have different experiences with the schools. Some, good/great, some not so great. I have had it both ways.

 

I do want to mention something that worries me quite a bit. I really feel that our power to make medical choices for our children (and quite possibly for oureselves) is eroding in leaps and bounds.

 

Last nite my husband and I were listening to the national news as they were talking about mandating the flu vaccine for ALL children btwn the ages of 6 mos and 18 years old. Currently it's on the schedule for 6 mos. thru 5 years, I believe.

 

I was telling my husband, it wouldn't surprise me, if employers were able to mandate certain annual medical tests, vaccines, etc. for employees in the near future too. Could end up, where if you don't do what you're told, you will lose coverage for assoc. conditions or sick days with pay. Everyone knows that health care in the US is in a bad place with costs. Wouldn't surprise me, if this situation is used to further profits, while we lose rights.

 

I think it's a good idea to keep in mind, that there are people who it might be better not to discuss your choices for your child's treatment with.

 

Is there a point where you could be forced to place your child on medications? If you run into the wrong person, could a situation similar to this take place?

 

I certainly don't want to alarm anyone or discourage them from getting things in place that have clearly been of great benefit to many children (IEP or other services), but when you get a "bad vibe" I just think this is something to keep in mind.

 

http://www.ocregister.com/column/nate-pare...overnment-court

 

Child abuse by the government

Government rips an autistic boy from his home because it prefers a different treatment than the one offered by the parents.

[emma1]

Kim, I totally agree with you! There is a family is know who goes to a school in our area (but not our school). Her child has significant issues with ADHD, and she put him on a protocal of fairly high dose fish oil (based on significant research, BTW, which she clearly understands). Although everything is not perfect, her child has shown dramatic improvement. Anyway, during a school conference, after the school commended the improvement (!), my friend mentioned this, and someone at the school asked if it was all under a doctor's supervision. She said no, but that she had researched it, and gave the names of the books, and even briefly stated the research studies. She said the person in the meeting became so upset, that the he basically told her she was a bad mother and that she could be killing her child. My friend left in tears, and was scared for weeks that this person was going to call child protective services (as he had mentioned that while berating her!).

[michele]

hOW AWFUL FOR HER. i GUESS MAYBE WE SHOULD BE CAREFUL HOW MUCH WE TELL THE SCHOOL. i KNOW i HAVE MENTIONED THE SUPPLEMENTS BEFORE TO MY SON'S TEACHER WHOSE WIFE IS A NEONatalogist (SORRY FOR THE CAPS) and he may question me for using them too! I have said how I wondered if the GABA calm or the 5HTP was making him more excitable at school. Boy maybe less telling is better. Last night at my daughter's conference I taked to her teacher about the teacher placement for my son next year in first grade. She and I are on a personal level, so she said it is a good thing I am gettting him identified in kindergarten (different school building) because it is a long road and if you don't do it then beware it could take till third or fourth grade. Give me a break! She said to really push and persist on it because they don't like to give them an IEP for attention at a young age. I am glad we have gone to the neurologist and immunologist and have this stuff in place as far as diagnosis. It may take awhile to get it done but I think we have covered the necessary ground that the school will have to help him. I agree they will talk about them though and watch them more closely because they come in with a preconceived notion that they have problems.

 

 

Michele

 

 

Kim, I totally agree with you! There is a family is know who goes to a school in our area (but not our school). Her child has significant issues with ADHD, and she put him on a protocal of fairly high dose fish oil (based on significant research, BTW, which she clearly understands). Although everything is not perfect, her child has shown dramatic improvement. Anyway, during a school conference, after the school commended the improvement (!), my friend mentioned this, and someone at the school asked if it was all under a doctor's supervision. She said no, but that she had researched it, and gave the names of the books, and even briefly stated the research studies. She said the person in the meeting became so upset, that the he basically told her she was a bad mother and that she could be killing her child. My friend left in tears, and was scared for weeks that this person was going to call child protective services (as he had mentioned that while berating her!).

[Calicat]

CSP,

Good for you! I think these issues surrounding materialism are so important for raising healthy, happy children. I'm like you... my six-year-old daughter barely knows what a Webkinz is (only saw one at a friend's house) and doesn't have any; she asks to play a game on the computer maybe once a month, and then it's something like Sesame Street or an art program or Reader Rabbit Math. She doesn't watch tv at home, but we do have movie night together every Friday with air-popped popcorn and real butter (no micro popcorn needless to say) and she watches her own videos here and there. She is such a well-spoken and thoughtful and HAPPY child that everyone has commented on it from the time she's been very young. For her, a little treat like a healthy sucker or a juice popsicle is a real treat, and I find she enjoys things more than many kids. I think too many kids have gotten so jaded at such a young age, and it is sad, sad, sad to see. Children deserve a childhood of innocence and joy.

 

Remember how fun it was to give and receive valentines when we were young? Now, they could care less about some dumb little card; it is just another excuse to collect as much crappy candy as possible.

 

This week my I went with my daughter's class on a field trip to a children's concert (Fred Penner, a Canadian children's entertainer). He is fun and insightful, and sings of things children can relate to (or should be able to). Well, my daughter and I had fun and sang along, but so many of the other kids in the class were kind of slumped in their seats with this bored look on their face, and some kept asking "When will this be over?" One of those girls is a Hannah Montana fanatic, and clearly this was not glitzy and fashion-y enough. Another kept saying, "Is there going to be a movie?" This is a bunch of SIX year olds! They were taken on a bus to a darkened auditorium to watch a fun, hour-long concert, and instead of being a treat, it was a drag to those jaded little minds. And don't even get me started on the lack of "concert manners" exhibited by these kids. Many didn't clap, they talked throughout, they put on their coats and stood up to leave while he was still singing the beginning of the last song!

 

Kim and Emma,

I am appalled at the direction this seems to be going, and scared as more and more rights are taken away. I agree that the closed-lip policy may really be best. I certainly don't discuss my vaccination choices with too many people.

 

I think it was on Caryn's website that I found a very interesting documentary, about an hour and a half long, but well worth watching. It is a video produced by a young man who had been on serious meds--SSRIs I think--and had very bad side effects, like hallucinations. One day he ended up in his classroom pointing a gun at the kids. Now he is off the meds and his life has turned around. The documentary goes into the seriousness of such drugs as Ritalin and Prozac, the side effects that are hardly mentioned (like increase suicide risk), and the story of one mom who had her child taken away because she had refused to medicate. The power of the "state" is much deeper and scarier than I think we usually imagine.

 

Calicat