PANDAS and school

[trubiano]

Well, almost a year since our issues started and I thought we had it under control! I do not post often, but I read almost everyday. This site has been a huge help and I'm hoping for some more great advice. My 7 year old has been doing well. The tics have gone and all the OCD/emotional issues come and go. We are in the middle of his "confusion" episode. He is day dreaming in school and is unable to have any focus. His forgetfulness is also a big issue with school work. I need help! What do I do? He is on PCN daily, fish oil, probiotic, and a mulitvitamin. As you all know the Neurologist keeps pushing Clonidine, but that isn't going to happen. To give you an example of what has been going on: I told him last night to feed the dog. He went into the kitchen and a few minutes later when I walked in he was just standing there. I said "Conor, feed the dog" He said "Oh, I forgot". Then I walked out. A few minutes later I went back in and he was still standing in the same spot. "Conor, what are you doing" he says, "I forgot". So I say "feed the dog, please" He walks over to the drawer and grabs a pencil out. I ask him what he is going to do with the pencil and he just laughs and says I want to draw. Needless to say I just fed the dog! He was given a work sheet in reading class and in the 40 minutes he had to do it he managed to answer 2 questions on it. I'm going in to explain to the teacher(again) how he needs help focusing, but what else can I do? Is there anything the rest of you are doing that has helped? I know this is just temporary and it will pass, but his school work is hurting and I don't know what to do! Thank you again for all your help this past year. What do you use to help with focus? I was thinking maybe Child Calm?

[faith]

Hi trubiano,

what you describe about taking a long time to finish tasks and schoolwork is exactly what I go through with my son. He is in third grade now and has always had that issue at school. He does not struggle with the learning, just the time management. His teacher this year has been wonderful for him, and has recognized that what we always thought was lollygagging is really his obssessive compulsive tendencies and perfectionism, like he writes beautifully, but erases ALOT. Alot of his failure to complete classwork has to do with him having to do things on his own terms, his way, the way he always does it, it kind of all ties into the TS/ocd/anxiety. The teacher has been great in working with him and we have just gotten the 504 plan implemented for him, so she gives him certain accomodations to compensate for these issues. She knows she has to refocus and redirect him. If you think this could be part of his symptoms, perhaps you could look into the 504 for him. If you have a diagnosis of PANDAS, I believe that will be enough to qualify.

 

Faith

[trubiano]

Hi trubiano,

what you describe about taking a long time to finish tasks and schoolwork is exactly what I go through with my son. He is in third grade now and has always had that issue at school. He does not struggle with the learning, just the time management. His teacher this year has been wonderful for him, and has recognized that what we always thought was lollygagging is really his obssessive compulsive tendencies and perfectionism, like he writes beautifully, but erases ALOT. Alot of his failure to complete classwork has to do with him having to do things on his own terms, his way, the way he always does it, it kind of all ties into the TS/ocd/anxiety. The teacher has been great in working with him and we have just gotten the 504 plan implemented for him, so she gives him certain accomodations to compensate for these issues. She knows she has to refocus and redirect him. If you think this could be part of his symptoms, perhaps you could look into the 504 for him. If you have a diagnosis of PANDAS, I believe that will be enough to qualify.

 

Faith

 

Thank you so much!! I met with his reading teacher who is over 60 and does not believe in positive reinforcement and told me she didn't have time to keep re-directing him. When I handed her the print out about PANDAS she didn't even reach for it, I had to lay it on her desk. I'm setting an appointment up with the principle. This is something we will be dealing with for a long time and if I have to force the teacher to treate my son a little differently than I will. I had not heard of the 504 plan and will be bringing that question up at our meeting. Thank you again!! Have you tried any natural things to help with focus? He is doing so well in every other way I'm afraid to put something new in his system, but if it will help him I will.

[faith]

Trubiano,

If the school or teacher is not aware of your son's issue or diagnosis, she possibly does not take you that seriously. Had she ever observed him with the symptoms or tics before he was on the pen? See if it is under control, she may not be aware there is something going on, so you may have to present the school with the diagnosis in order to implement the 504, it does require a diagnosis from a physician. My son's teacher noticed his symptoms in beginning of the year and kind of talked to me about it right from the start what we could do. She is the one who got the whole ball rolling, I just had to follow along. She is nice and young and so is patient and up on these things, she has been a blessing for him. She sees his potential and wants him to succeed and not have his issues get in the way. I only pray we'll be as lucky next year, but at least everything is in place now. So if you could get that going it will be good to go for next year. Have your doctor state what the diagnosis is and what the issues and symptoms are and could be if exacerbated.

 

I don't know of anything for focusing issues (except yelling loudly!), I am like you, don't want to try anything, for I always worry what effect it will have on the tics, that is my main issue. If he can take fish oil, I think that could be a good help I have heard from some, but I can't give that because of the tics.

 

Good luck,

Faith

[Sunshine]

Turbiano,

 

Your 'feed the dog' story sent chills down my spine. Oh my gosh, I am such a broken record that it hurts my ears. I repeat every direction time and time and time again... and again! I thought that I was the only one going nuts, but I'm happy to have your company!

 

Actually, my son has improved over the last year. Perhaps it is age, or maybe he's beginning to feel sorry for me! Seriously, I do think that going Gluten free has brought him some clarity. I also believe that GABA has helped him. In combination these two changes make perfect sense. Glutamate (found in wheat etc...) can stimulate the nerves, where as gaba is the calming neurotransmitter. You can think about glutamate and gaba as being on opposite sides. Balancing these two seems key.

 

Perhaps our kids have to work harder at processing our language commands. Maybe things get muddled for them. In fact, tuning out might be their way of coping.

 

Here is an interesting quote from Dr. Amy that ties together some of what I'm trying to say:

 

"GABA helps to put the gaps between words so that you can tell the

beginning of one word and the end of the next word. I have observed that

when we see GABA levels on a urine AA test it is related to language in

the children.

 

However, too much GABA will make a child sleepy as it is an inhibitory

neurotransmitter. Glutamate is the stimulatory neurotransmitter. So we are

looking for a balance between the two.

 

GABA is not the only factor that is involved in language. I believe that

we also need sufficient dopamine levels."

 

I hope that you find something that helps. Lack of focus is hard for our little ones, but it is hard on us too! I already have enough grey hair, and my wine consumption is at max!

 

Cheers,

Sunshine

[michele]

We are in the same boat. It is very frustrating. I am trying to be proactive with the school. At the begnning of the year the school acted like he was fine. They had never heard of PANDAS. The teacher said he wasn't showing symptoms. Now he is concerned about his lack of focus, finishing work and listening to directions. Of course he is failing in handwriting. So now it will be interesting to see how they accomodate him. I asked for an evaluation in Oct. Now it is Feb. and I have heard nothing. I did try GABA Calm and 5HTP and I think they made him more hyper. I was not sure which one it was so I stopped them both. Also I was giving ADDED Attention but Kim brought to my attention that it has a preservative in it so it is probably not good either. It was as if he was getting too many endorphins and was acting drunk. It also was mixed in juice so that could have been making him hyper. I think the school component will be the hardest part of this PANDAS for us. If they can't pay attention and get their work done they will not progress in school regardless of their intelligence. Don't you think part of the listening is selective? I know my son doesn't want to do the things so he ignores me. Same with his therapist and tutors, if he chooses not to want to do it he shuts down.

 

Michele

 

 

 

Turbiano,

 

Your 'feed the dog' story sent chills down my spine. Oh my gosh, I am such a broken record that it hurts my ears. I repeat every direction time and time and time again... and again! I thought that I was the only one going nuts, but I'm happy to have your company!

 

Actually, my son has improved over the last year. Perhaps it is age, or maybe he's beginning to feel sorry for me! Seriously, I do think that going Gluten free has brought him some clarity. I also believe that GABA has helped him. In combination these two changes make perfect sense. Glutamate (found in wheat etc...) can stimulate the nerves, where as gaba is the calming neurotransmitter. You can think about glutamate and gaba as being on opposite sides. Balancing these two seems key.

 

Perhaps our kids have to work harder at processing our language commands. Maybe things get muddled for them. In fact, tuning out might be their way of coping.

 

Here is an interesting quote from Dr. Amy that ties together some of what I'm trying to say:

 

"GABA helps to put the gaps between words so that you can tell the

beginning of one word and the end of the next word. I have observed that

when we see GABA levels on a urine AA test it is related to language in

the children.

 

However, too much GABA will make a child sleepy as it is an inhibitory

neurotransmitter. Glutamate is the stimulatory neurotransmitter. So we are

looking for a balance between the two.

 

GABA is not the only factor that is involved in language. I believe that

we also need sufficient dopamine levels."

 

I hope that you find something that helps. Lack of focus is hard for our little ones, but it is hard on us too! I already have enough grey hair, and my wine consumption is at max!

 

Cheers,

Sunshine

[faith]

yes, Michele, I am beginning to think the listening is selective too! You wouldn't believe how many times I have to say "come and brush your teeth" EVERY SINGLE NIGHT! He'll go "okay,....wait" and then we repeat the sequence about 4 or 5 times. Burt I do think this is also a part of the ocd, in other words, they have to do things "the way they always do it", and that is what stops them from completing tasks timely. Its like its not comfortable for them to do it right away, they have to get comfortable with the idea first. Don't know if that makes any sense to you guys, but I see this over and over, he gets "used" to doing something one way, in a certain routine, and can't transition out of it (unless of course I start yelling). Luckily, his teacher this year has recognized that and even told ME that he likes to do things "per his own routine" (her words). She has been great in recognizing his strengths and working around the quirks.

 

Michele, I am wondering why the school didn't contact you yet (have you called them?). When we started our evaluation in October, we were sent a package from the district which had a date already set for early December for when we would all meet at the district office to discuss the results and recommendations. (they agreed there was no learning disabilities, but would qualify for accomodations as per the 504). Once I got the diagnosis in writing (neuro stated "has vocal/motor tics, and ocd/anxiety"), we then met at the school and they set up accomodations tailored to him. And actually the teacher had already implemented some things since all this was basically "in the works". I would definitlely call the school psychologist or whoever is handling his case to inquire what the next step, if any, would be.

 

Faith

[heveritt1]

Hi there, I am also in same boat. We have been through alot with the school so I thought I would add my experience. We have had the tic on and off for over a year, we have a neurologist, natropath, pychologist, you name it, we have it. When he started Kindergarten the tic was so bad, along with the behaviour problems. He can't focus, can't sit still, won't follow directions is all I heard, he was getting sent to the principals office for silly things (just my option). I almost felt like that since I brought attention to the issues before school started I set him up for problems. I talk with the principal alot and she suggested an IEP and ADHD meds, I am totally against this and very open about my wish to treat him naturally. I reminded her that he has possible PANDA's, sensory, anxiety and food intolorances so every piece of this can make focussing and sitting still all day hard. He is doing great with the learning, I actually think he gets a bit bored. Well, we are doing much better right now (for this minute) the tic is back some, but I think it is because he is getting exposed to the flu and strep all the time right now. It is not that noticable so I am just ignoring it for the time being. Here are some steps that helped him.

 

First we took him off all the artifical dies and colors, preservitives (he already had an egg allergy). We started seeing the natropath and here is what we do - NutriADD (a homopathic suppliment for focusing), Deproloft (another, similar to HTP I imagine), multi vitiams twice a day and Taurine when he is having a blinking spell. The school gives him the NutriADD and Deproloft after lunch to help him get through the day. In the mornings I give him a "immune cocktail" of concord grape juice (to hide colors and flavors) with Luerch powder (not sure I am spelling this correctly, it is an immune booster) and a 1/2 teaspoon of Cod Liver Oil. If there are colds moving around I add Sambuca and Echanicia and Hybiscus. Oh, and a proboitic twice a day. We had the food sensitivity test done and he was off the charts for all Dairy and Wheat Gluten. So, since Christmas we have been Gluten, Egg, Dairy/Casien and Die free! It sounds bad, but you get use to it. I think the diet changes have helped tremdously.

 

He got a new teacher in January and she has 8 years experience with Austism, so I think that has been great for him. She even requested kids not bring candy for Valentines, I loved that! He does not seem to be in trouble as much. They have started a morning chart for him that seems to be doing good. The goal is for him to come in the room, say Good Morning and do the things he should do every day. Follow direction! They are working with him, so hopefully, by first grade it will get better. You never know, I always see stories on this forum about kids getting worse in 2nd and 3rd grade. it is definatly unfortunate to have a teacher that refuses to try and understand.

[trubiano]

Sunshine!!

I have started him on the gluten free diet. Out of my three children he is the only one addicited to breads/cereals so this is going to really hard. What is GABA? I'm going to google it, but is it something I should have my doctor test him for? Thank you for your reply. I keep coming back to this board becuase we are the only ones who know what each other is going through and the support is wonderful. My doctor is very understanding and will do what I ask, but has never had another PANDAS child.

[trubiano]

heveritt1:

Thank you so much for your reply! I am so happy I found this board a year ago! I met with the school principle this morning and explained what was going on. The reading teacher my son is having issues with teaches in a very "old school" manner. If my son doesn't have positive reinforcment he shuts down and you won't get anything from him. The princple was very nice and seems like she is willing to do what ever is needed. She did mention IEP, but as a last resort. Like your child, mine is very smart and doesn't have a learning issue. He just needs routine and doesn't work well on his own. He needs reminding often to do his work. The principle is going to talk with the reading teacher and every other teacher that works with him in the future. She suggested we have a meeting at the end of the year with his 3rd grade teacher(she will hand pick) and then again when school starts so they can all be on the same page with his learning needs. I feel so much better. Thank you for the NutriADD idea. I will ask our natropath about it. Is your child on a daily antibiotic? My son's tics stopped about two months after he started it and only come back if he is off the penicillin. We just deal with the OCD/emotional/focus issues now thank goodness! I never had him checked for food allergies Do you think our doctor can test for those? I do have one more question for you. You mentioned giving yur child an "immune booster" I thought we weren't supposed to boost their immune sysytem since PANDAS was an auto-immune issue. Did the natropath start that or someone else? Thank you again for your help.

[heveritt1]

trubiano

I am glad the talk with the principal went well. I am not sure if the doctor will do the food sensitivity test, the medical doctors don't believe in it as much. The American Assoc of Pediatrics just released an artical saying that they have finally finished a study saying that they have been wrong for all these years they were wrong.... foods can effect behaviour! About the immune system, my youngest (not the one with the tic) and I both have tested out immune system and had one of our IGG subclasses come out low. We assume Stelrling has the same problem. He is always getting skin problems, etc. that will never go away. He has just had this bout with ringworm for 4 months. He took 2 antibotics, 2 antibotic creams and is not on an anti -fungal. He was on an antibotic last year for almost a year. It was weird, he would get the tic, we gave him an antibotic and it was gone. The doctors still act like they can not explain that??I think that means PANDAS, but you know how it is hard to get anyone to diagnose PANDAS. Anyway, his tic has been back on and off for a month but I have not gone as far as the antibotic yet, I am trying to hold off. Keep me posted how it goes with the school.

[emma1]

I just wanted to say -- any of you who found help at your school should count yourselves so very lucky!!! At one point, I went in and spoke to one of my daughter's teachers about this condition. It was a huge mistake on my part. The teacher has treated my daughter as if there is something "wrong" with her ever since, and has significantly lowered her expectation of what she believes my daughter can do.

[michele]

I contacted the school on Fri. and here is what the school psychologist said. She is yet to get the report from the outside OT person the district contracts to do the test. When she gets the results she will review them and then set up the meeting. She will then contact me. It may be awhile yet because the OT people are very backed up. I questioned her if they were making any other accomodations for the ADD and she said he was not evaluated for that but she would contact his teacher. I came to the meeting with a diagnosis of ADHD, PANDAS and an OT evaluation from a private group I use. Now I guess they are going to mail me a checklist on the ADHD to complete and have his teacher fill out a checklist. Maybe this will get done in time for next year if we are lucky! I have to agree with the post here that it seems bringing the diagnosis to the schools attention might have brought more attention to my sons behaviors. It is that self fullfilling prophecy. I just want him to be successful in school and work to his maximum potential. I know he is smart but channeling that energy is the challenge. He likes to do what he is interested in and we all know school is not always about fun! Also I have a form completed by his teacher to take back to the neurologist. It will be interesting to see his take on it. In the past he has always said lets's wait five months and see how he is doing. Dr. Murphy recommends Tennex has anyone here had any luck using Tennex for attention issues and a child that has neurological (tic) issues?

 

Michele

 

yes, Michele, I am beginning to think the listening is selective too! You wouldn't believe how many times I have to say "come and brush your teeth" EVERY SINGLE NIGHT! He'll go "okay,....wait" and then we repeat the sequence about 4 or 5 times. Burt I do think this is also a part of the ocd, in other words, they have to do things "the way they always do it", and that is what stops them from completing tasks timely. Its like its not comfortable for them to do it right away, they have to get comfortable with the idea first. Don't know if that makes any sense to you guys, but I see this over and over, he gets "used" to doing something one way, in a certain routine, and can't transition out of it (unless of course I start yelling). Luckily, his teacher this year has recognized that and even told ME that he likes to do things "per his own routine" (her words). She has been great in recognizing his strengths and working around the quirks.

 

Michele, I am wondering why the school didn't contact you yet (have you called them?). When we started our evaluation in October, we were sent a package from the district which had a date already set for early December for when we would all meet at the district office to discuss the results and recommendations. (they agreed there was no learning disabilities, but would qualify for accomodations as per the 504). Once I got the diagnosis in writing (neuro stated "has vocal/motor tics, and ocd/anxiety"), we then met at the school and they set up accomodations tailored to him. And actually the teacher had already implemented some things since all this was basically "in the works". I would definitlely call the school psychologist or whoever is handling his case to inquire what the next step, if any, would be.

 

Faith

[MARYANN]

I just wanted to say -- any of you who found help at your school should count yourselves so very lucky!!! At one point, I went in and spoke to one of my daughter's teachers about this condition. It was a huge mistake on my part. The teacher has treated my daughter as if there is something "wrong" with her ever since, and has significantly lowered her expectation of what she believes my daughter can do.

I'm so sorry to hear about that and that is so not right. I would go back to the school and speak to her teacher again. Hopefully she will understand after you speak to her.

[michele]

I think it is a shame if the teacher is treating her different. I feel the same way that bringing this to the schools attention has put him into a label. In fact the principal said this is another one of these strange "syndromes". The frustrating part is these are smart kids. Maybe they have attention issues or emotional issues but they are creative, intelligent children. My son can memorize and do things on the computer that is beyond his years! The part of the brain being attacked by the antibodies is beyond their control. I don't want them to be punished for their lack of focus but redirected into making good decisions so they can be successful in school. I'd talk to the techer again Emma and express your concerns.

 

Michele

 

I just wanted to say -- any of you who found help at your school should count yourselves so very lucky!!! At one point, I went in and spoke to one of my daughter's teachers about this condition. It was a huge mistake on my part. The teacher has treated my daughter as if there is something "wrong" with her ever since, and has significantly lowered her expectation of what she believes my daughter can do.

I'm so sorry to hear about that and that is so not right. I would go back to the school and speak to her teacher again. Hopefully she will understand after you speak to her.