Anyone have success with ADD meds?

[HopeinHIM]

DS 12 PANS/ Bart. Two years on varios treatment. First year anti B's second year naturals. Things are settled down a bit and we are no longer homebound. Doing Byron White, Abart, Zithromax helps PANS symptom's and allows me to use the herbs with more success. Without it, he reacts to everything neuro- psychiatrically. We need to get him back in school. He has done nothing in two years and it's time but he cant seem to think on school work for more than 20 minutes a day. Plays Vgames and seems well but school work equals stress and no go!! First on the journey we tried SSRI's and a few other things to calm his thinking. They all explode on us. He get's anxiety. But that was two years ago and ready to try again. What non stimulant has anyone had that works for focus. he just says he cant focus ever on learning. Was honor student.

[dcmom]

Is it possible it is OCD and not ADD?

 

Just wondering because I have two girls that when they flare HW is impossible (honor students also)- but it is mostly OCD causing issues.

 

We just started propanolol which is a beta blocker, and seems to help the general anxiety enough to calm things down. We are in a similar spot where kids are only doing 1/2 hr- not good- but it is OCD/ anxiety shutting them down.

 

What is school doing about time he missed? Holding him back or letting him go forward?

[HopeinHIM]

School is pushing forward. I trued to get hone instruction and even with two doctors notes and a therapist note they declined n say he should be at school even if it's just a few hours a week. No learning going on although they do try. Have him IEP in resource room for quiet. Yes , he also has ocd. But his mind just races on Hus interests. Vgames n skating. He seems to have no ability to concentrate on school subjects. He seems upset BC he says he wants to be like normal again but school work easily overwhelms. I am on inderol myself. For migraines. I am sure there is a psychological components involved as well. I guess I could try med again but Dr. T put him on it a while back n he got dizzy so I did not give a good trial. Thnx☺My husband also has ADD so I am leaning in that direction though.

[tj21]

Look in to Amantadine. We weaned ds16 off all stimulants and are having moderate success with Amantadine. Some, but not all, of the ADHD for him is definitely related to PANS; brain fog and tics, which have subsided w/that end of treatment.

[cynditk]

Namenda is helping my son. It is also a glutamate antagonist.

[maybaby]

We tried every ADD stimulant medication on the market for my DD as well as Straterra (non-stimulant) and Intunive (blood-pressure med). My DD was so sensitive to all medications that even the lowest dose had side effects. Everything increased her tics and made her anxious.

 

If you do want to try a stimulant, I recommend the Daytrana patch. With the patch, I was able to cut it into 1/4's so that I could control the dose and give her a tiny amount (only 2.5 mg from a 10 mg patch...which 10 mg is the lowest dose). I also like that I could put in on and take it off whenever we liked.

[MarcyJ]

DS 12 PANS/ Bart. Two years on varios treatment. First year anti B's second year naturals. Things are settled down a bit and we are no longer homebound. Doing Byron White, Abart, Zithromax helps PANS symptom's and allows me to use the herbs with more success. Without it, he reacts to everything neuro- psychiatrically. We need to get him back in school. He has done nothing in two years and it's time but he cant seem to think on school work for more than 20 minutes a day. Plays Vgames and seems well but school work equals stress and no go!! First on the journey we tried SSRI's and a few other things to calm his thinking. They all explode on us. He get's anxiety. But that was two years ago and ready to try again. What non stimulant has anyone had that works for focus. he just says he cant focus ever on learning. Was honor student.

Every article and doctor/advocate I have spoke to says the two worst medications for PANDAS is ADHD meds and risperidal. Hope this helps.

[trggirl]

We have found things that helped, but we have not found that magic bullet yet.

 

1.DMAE - this is over-the-counter and really seems to help my daughter. I started very low on dosage and have stayed low. Honestly, this seems to be the key for most of her meds. If we try normal doses, we get side effects. At very low doses, we get a bit of help.

 

2. Amantadine - this has been very useful.

 

3. Vyvanse - this seems to be the best, but again, we had to back down on the dose. She takes the smallest dose available. We do get better focus at the higher doses but it brings on the tics so we stay low.

 

My daughter is also on Propranolol and it has calmed her a bit. She was diagnosed with thyroiditis. I can't say that it helps focus directly, but being calmer does help.