StillHopeful

Hi - My son (12 years old) has not been able to go to school consistently this year or the end of last year and it is becoming a real problem since he is getting behind in his work. He will do about 10 mins of work at home (with me) and then start freaking out that it is too hard and I don't understand and he can't do it. I am really concerned that he doesn't seem to be able to get his work done. At first I thought it was behavioral or that he was being lazy but now I think he has a real issue. Has anyone else had the same experience and what did you do? Thank you very much for your help!

Just curious if anyone has similar information for NY. Thanks!

Thank you so much for all the great ideas and the specifics Norcalmom about how much to use, etc... Your advice is very helpful. Now I don't feel so stuck about what to do. I amgoing to get the lydcocaine. We have given him clonazapam for issues related to school anxiety. It usually makes him fall asleep and does nothing to calm him down. I think it makes him worse. But I agree, it would probably do a world of good for me!

[ Hi Pandakid11 -- I repllied yesterday but maybe something went wrong with my computer... I was just wondering if you thought it could be an OCD or a tic? Is he able to get into the building and go to class? I too am having a difficult time getting my son to school . I am working on getting the school more involved with providing a tutor and getting someone to help transition him back to school. Can anyone in your school district help you?

Thanks for the information about the cream. I'll ask his pediatrician about it. I think that would help a lot.

Thanks Bsimon3!

Hi Hopeny - I reread your post and see that you are giving 400IU of D. Thanks

Hi Hopeny - According to my research Vit D is an anti-inflammatory. Not sure how fast it works though. Is it regular D or D3?

Hi -- I want to take my DS11 to a specialist and assume they would want to do blood tests. There is no way my son will go or sit still for a blood test. He has built up such fear about it. Since I know this, I have delayed taking him. I am just wondering if anyone else has difficulty getting their children to dr visits when they suspect they will need a blood test and how do they get their child to sit for the blood test? Thank you!

Hi -- Does anyone know if you can buy Pepsid in capsule form? My DS won't chew the tablets due to the texture. Can it be Pepsid AC? I would assume that it is the active ingre. Famotidine that helps so will any brand do? Thought I might give this suggestion a try. Sorry for all the questions and thanks.

Vacuum them (Totally kidding!)

It is absolutely possible to be concerned about contamination with certain objects or places and not others. For instance, my son couldn't care less if his shirt was dirty or if he had cat fur on his shirt. He mostly cares about germs on his utensils and food contamination. He doesn't care if the bathroom is dirty or his room is messy or any type of sloppiness. He is not a recurrent hand washer. I found this article and thought you might like to read it. http://www.ocdchicago.org/index.php/experts-perspectives/article/stronger_than_dirt_ocd_and_contamination/ If your son is willing, maybe you should take him to a therapist that specializes in OCD and he/she could do ERP with him. My son would not cooperate and said he was just fine the way he is. So far he is coping on his own but I am hoping one day he will realize that some of his behaviors are holding him back. I have to say though that lately (in the past month) things are getting much better. He used to have to knock on things and had more rituals than he does now.

I agree with EAMom. Sounds like contamination. That is what my son has. He won't let my husband cook. If anyone one leans near his food or stands too close to his plate he freaks. I can't touch his computer screen. Can't sit on the bed. Etc.... Most of it involves his eating utensils. No silverware, only disposable cups and cutlery. He throws away brand new cups, plates and plastic cutlery if he sees any kind of spec on it. Costing me a fortune in paper goods. The reason you don't get it is because it is not logical. It's OCD.

Hi Fightingmom -- The way this behavior was described to me was that my son was obsessing over the computer and so if we took it away or physically took the keyboard, etc... it would cause him anxiety because he was obsessing. I have found that when I say a strict NO to certain things (or if a teacher at school does) he can obsess over it and then become over reactive. When I try to come up with another consequence I am still getting my point across and we avoid all the other behaviors. I have had to learn to parent him differently over the past year or so. It is not easy because sometimes I feel like he is "getting away" with things. However, the peace we have had over the past several months has been awesome. We try not to sweat the small stuff. It took a while for my husband to get on board because he doesn't live it as much as I do but now we are usually (not always) in agreement. By the way, my son has not been diagnosed with anxiety just ocd and I agree with you about how anxiety doesn't need to be fear based.

My boys' handwriting changes when they are not well. It is absolutely a symptom of PANDAS. Here is the link: My link In addition, when things get too complicated like in math, the younger one (6th grad/11 yrs old) can not deal at all. He skips homework and everything becomes "too hard". Since he is only in 6th grade and normally is very diligent I do not make a big deal out of it. He is in honors math this year. Not sure if he will be in it next year. It is very stressful. I think you may be seeing the result of the antibiotics. Also, the tutor may be helping him with his stress level and confidence. For my child, stress is a major trigger,especially school work. I got him a 504 plan and asked that he have text books at home and he gets 1 extra day to do his homework for every day he is absent. This has really helped him feel calmer about his work load. The school behavior specialist told me to try to get him to school whenever possible even if it is only for 1 period so that he doesn't become a school refusal case. I bribe and motivate as best as I can. I pick him up early or drive him to school. Nicklemama -- Just wondering what antibiotic your child is on and what the dosage is? Thanks!

Wow! That is very interesting about the peanut butter. I will try that with my boys. Regarding the Advil, my DS's psychiatrist told me to give my DS11 a regular dosage of ibuprofen in the am and pm. I do worry about the long term effects as well but it seems to help. I have only been giving it to him for the past few weeks. Note we have not done steroids. Just FYI, my DS14 used to have major rages that were due to his anxiety (which we didn't know at first). For example, if we tried to punish him by taking away his computer he would flip out, hit, curse, break the door, run away, etc... It was scary and very extreme. We had to learn his triggers. Instead of taking away the computer privileges completely we would say you can only go on the computer for 30 mins today because you did xyz. We also learned we could not take away the mouse or keyboard because this also was a tigger. He was very compliant once we realized how to handle him and his behavior greatly improved.

Hi Linda -- I saw some very minor changes in the first 3-4 doses. There was a slight improvement in his mood and he was a little more cooperative. I was looking for it. It was not obvious. After about a week I saw an improvement in the ticking and OCD. I think I got a quick response because I got him on the antibiotics right away, as soon as I saw the OCD, moodiness and anxiety. He never stopped ticking though. I am wondering if he had continued on the amox, would he have continued to improve? Right now he is sleeping a lot and is very cranky and says I am making him tic. I am glad things are improving for your son and I hope he continues to do well. Just curious, was your son able to do school work at home or was it too difficult for him? Thanks and good luck!

Hi - I am looking for some advice for my DS11. He has what I would call mild/moderate PANS or PANDAS. I I have a call in to the dr but want to ask for a longer duration of amox. Any advice? Also, what natural and safe thing can I give him to boost his immune system and reduce inflammationon. Thank you very much.

Hi Kimwal - I did google as you suggested and got the names of some places/Drs which are a little too far for us. My son has been seeing a neurologist for several years but I'd like for my DS to have a therapist to talk to about anxiety, tourettic-ocd, impulse control, etc.. I actually know of a great one but my DS (younger one) doesn't like him and won't talk to him. Thanks!

Thanks a lot.

Wow! Your update is amazing! I am so happy for you. Just curious ... how do you work with this doctor? Do they do traditional blood test and cultures or is it more about the patient history and answering questions? How often did you speak to her? Also curious about the cost. Right now we are treating with antibiotics. It is not clear if it is working yet. I would love to find a more natural solution. Thanks, Ngold24

Hi Eve - If you can't send or reproduce the chart, I understand. Could you let me know how to lay it out? I can do it on excel. For example, list these 15 know triggers on the left and then put the day on the top of the sheet,etc? Just let me know the triggers you used. DS was much improved yesterday. Had a great day in my mom's pool. Today, very agitated, inapproriate gestures, words,ocd, tics ..etc. Wondering if it was the chlorine? I would like to start tracking his behaviors. Do you see a response to triggers right away or next day? Thank you so much for your help! Ngold24

Hi Eve - Thank you very much for the information and advice. I would love to get a list of the items in your spreadsheet. I think it would be helpful in narrowing down his triggers. I am pretty sure sugar is one of them. The car is too but not sure why. Interesting about the chlorine. My DS was at a pool party and the next day he was ticing a lot. I thought it was from the cake but maybe it was the chlorine. Maybe both. Re the Nature's Vitality Calm, is that the powder or is it a liquid? We have the orange and my DS doesn't like it. What flavor are you using? I just chopped up a magnesium/cal/D pill for him into little pieces and he took that but it would be a lot easier if I had either a small pill or a liquid that he liked. Thanks again for yoru help! Ngold24

Hi Lynn - I sent you a PM. Hopefully I did it correctly. Ngold24

Hi Chemar - His neurologist diagnosed the TS and said it was probably PANDAS (his ASO #s were always high) and then he said no one treats PANDAS just TS. We continued to use him as our neuro but he wasn't very helpful about TS either. In fact, when I brought up the language issue the nurse pract said it wasn't a tic and my son was just being naughty. That is when I decided to find help elsewhere. I found a great psychologist who specializes in TS and I start to find out on the internet that there were protocols and drs who do treat PANDAS. So, I went to our pediatrician with Dr. S Schulman's protocal and asked him to follow it. He agreed about the PANDAS diagnosis but normally doesn't treat it. I have been reading your older posts and what has helped your son. It is very interesting and you are such a great resource. Thanks a lot for your reply. Ngold24