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ADD meds and PANDAS


Kiera
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Hi all,

I'm interested in any imput on starting ADD meds on PANDAS child (currently full remission on antibiotics). ADD is longstanding issue. Do the tics return? My ds8 is struggling in school, cannot focus unless someone is standing over him at every minute! Thanks.

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Hi Kiera.

Before you go the meds road...have you tried a gluten free/dairy free diet? The reason I raise this is focus/concentration is very much at issue with kids who can't digest gluten and casein properly - instead these proteins are thought to break down to opioid peptides, effectively drugging them and hence the spaced out look and lack of focus. (Also thought to affect pain threshold.) The dairy protein casein stays in the gut for about three days to a week, so eliminating all dairy in the diet can see fairly rapid results, though for us it did take longer. Gluten takes about 2-3 months to clear the gut and so the benefits are longer term. Going gluten free/casein free doesn't work for everyone and it does take commitment (and awareness of ingredients labels!) but it is something we can all do straight away. It's working for us...I gather it's about a 60% success rate. (Replacing sugar with honey, maple syrup, xyletol or stevia could help too and eliminating food additives if you've not already.) Apologies if you've tried this already. Best wishes.

Edited by Ozimum
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I would first eliminate all dyes and additives from diet. They have been proven to cause AD/HD issues. A new study just came out and I have seen it first hand in my DD. I know whenever she sneaks something with dyes.

 

And I would be careful with AD/HD meds as they can cause tics.

 

Nancy

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We tried Intuniv (Tenex) for a while for our DS; it's a non-stimulant ADD/ADHD med along the lines of Straterra.

 

Initially, both we and DS thought we saw improvement in terms of his ability to focus in class at school, stay tuned in to his homework, etc. We started at 1 mg. and got up to 2 mg. over the course of about six months, and left it at that 2 mg. mark for another 4 or 5 months.

 

But as DS's OCD behaviors improved, so did his ability to focus, and it seemed like the Intuniv wasn't contributing anything (anymore? or ever?). So we took him off.

 

He's not taken anything in this vein for almost 3 months now, and we don't see any decline in his focus. In the end, I've come to believe that most of it was really just a manifestation of the OCD behaviors, and as they've improved over time, so has his ability to focus.

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Thanks for all the imput! He is currently on a gluten free diet, we did casein free for over a year but he lost too much weight, added casein back. His weight is now borderline underweight (another reason I'm weary of stimulant ADD meds). We did try intuniv already as it's non stimulant but he kept falling asleep in school so we stopped after a week, it seems he needs the stimulant type but I'm reluctant because of these issues. Just not sure of the next move, he gets all the extra supportive therapies at school - OT, ST and resource and has an IEP but just cannot focus in the classroom and needs constant redirection. Dyes don't seem to really affect him!

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I just took my daughter off Ritalin as we are in the middle of the a strep episode and it has increased her OCD since she got sick (ASO titers at 2000). We are just now seeking treatment for PANDAS, so I don't have any advice to offer for someone who is in remission. However, here is our experience... At the time we started our dd10 on the adhd meds we had known that adhd was an issue for a while (she also has learning disabilities) but she was NOT diagnosed with PANDAS although we had been through our initial episode about six months earlier. She was already on Zoloft as a result of that episode. I was reluctant to try it because of her anxiety and the side effects. However, she was so angry and frustrated at school and then in meltdown all night at home, we decided to see if it helped at all. Those issues did get better pretty quickly. We started with the lowest dose and increased it very, very slowly. Then, of course, we had a strep infection about a month into it and the OCD got worse again (this was last January). I was able to convince her regular doctor to put her on six weeks of antibiotics which reduced the OCD and anxiety greatly. Her doctors (regular and psychiatrist) were not all that supportive of really exploring a PANDAS diagnosis and they scared me about the dangers of antibiotic resistance, so I was relieved that the antibiotics we did get seemed to cut down on the severity of the episode. However, her overall level of anxiety remained higher than it had been. A couple of months later we ended up increasing her Zoloft (which, by now, she had been on for a year ) I didn't consider taking her off of the Ritalin at the time because no one brought it up, bear in mind that my daughter has not had a diagnosis of OCD despite the fact I kept bringing up her OCD behaviors to her psychologist and psychiatrist again and again. Also, the initial problem of being so angry and frustrated at school had not returned even she was more anxious overall. However, now that I have done a lot more research about both OCD and PANDAS, I realize we were playing with fire and got lucky it didn't blow up on us. This time, with a clearly diagnosed strep infection and an obvious increase in OCD, it was pretty obvious to her and us that she was having more problems on the few days she took her Ritalin after she started antibiotics and went back to school.

 

So, looking back now, I think the Ritalin was, at the very least, contributing to the overall level of anxiety. However, that was during and after treatment for a strep infection AND dd has not really been treated at all for PANDAS. So I guess the issue is if ds got sick with or exposed to strep and he was on a stimulant drug, it would probably make it worse. However, the one good thing about stimulant drugs is that their effect is immediate and it is out of your system pretty fast (depending on what formulation is taken). So, if he did get sick or otherwise start having a reaction, it's not like it will take weeks for the drug to get out of his system. I don't know if any of this information helps you with your decision, but at least it is some information from someone who has been there,

 

I will tell you that the side effects are hard to manage. Loss of appetite is a big problem. It is really hard to get a kid to eat while the medicine is in effect. You can make up for it with big breakfasts, lots of small snacks and a big dinner, but it something you have to think about and manage all of the time. Also, it caused problems falling asleep for dd, however we were able to counteract that with melatonin.

 

On the flip, just to make it super confusing (sorry!), let me also tell you that I have adhd and I take Concerta and Wellbutrin to treat it. I was diagnosed 20 years ago and was able to get by only on Wellbutrin until I hit 40 and suddenly had one kid with this crazy, episodic OCD/anxiety + adhd and another, dd7, with adhd. It has been a lifesaver for me. I am not exaggerating. I am not sure how I would have kept it together at all. However, I also have to be really careful about managing the side effects, which for me do include increased anxiety (but no OCD) and insomnia. So, once we start treating dd for PANDAS and, hopefully, cure it (dear God I am hoping that this happens), I would not completely rule out a stimulate drug to treat her adhd if it is still problem because the right drug at the right dosage can be life changing. However, right now we are going back to ground zero and starting over with dd and her medications because it is so hard to tell what is causing what and what is helping what.

Edited by jenb3106
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Thanks for all the imput! He is currently on a gluten free diet, we did casein free for over a year but he lost too much weight, added casein back. His weight is now borderline underweight (another reason I'm weary of stimulant ADD meds). We did try intuniv already as it's non stimulant but he kept falling asleep in school so we stopped after a week, it seems he needs the stimulant type but I'm reluctant because of these issues. Just not sure of the next move, he gets all the extra supportive therapies at school - OT, ST and resource and has an IEP but just cannot focus in the classroom and needs constant redirection. Dyes don't seem to really affect him!

 

If the Intuniv seemed to be helping him except for the sleepiness, you might try it again along with frequent snacks to keep his blood pressure modulated. Our DS was sleepy at first for about a week when he started, but we kept him stocked with granola bars, and that side-effect seemed to diminish within 7 to 10 days.

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Thanks again for all the imput. Because he was so sleepy with the intuniv the teacher didn't see any improvement in the ADD symptoms, maybe if we stuck with it longer?? He's already on prozac for anxiety so the Dr thinks that will help with the anxiety side-effect, so I guess my biggest concern is the loss of appitite (he's borderline underweight), affecting sleep and return of tics. Focalin xr is the drug the Dr wants to start. I guess the only thing to do is try it, assess side affects and if too severe stop it, or if he has an exacerbation of PANDAS, with-hold it temporarily. It's just so frustrating, in order to fix one problem, you create other problems...

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have not done meds...ds had some of these issues..maybe still some....

did brain balance program and that seemed to help quite abit with that..

i would focus on gettting good sleep..add melitonin if needed..maybe even .5mg.....

then maybe if not too scared..fish oil with higher dha than epa as epa is more stimulating....

try to wake him up earlier and do exercises ..BEFORE school...push ups, sit ups, jumping jacks..for 20 miniutes...

study just came out also ...that those who execided before testing had better test scores....

possibly related to being better able to focus...

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Hi again, ds already on DHA, I do have him spin on disc in the morning before school (helps with sensory regulation), I do believe exercise can help tremendously with focus, however affects last less than 2hrs, and needs to be interjected throughout the day, which kids get very little of in school these days. He really fades in the afternoons. He sleeps great 11hrs, no problem there. I guess he's just a complicated child with the usual alphabet soup of disorders- anxiety disorder, ADD, SPD,PANDAS,speech delay, GI issues, allergies and ezcema. I have tried all the natural approaches - DAN protocol, rotation/elimination diet, chelation, supplements etc.(at huge expense too) It is with great reluctance I've come to the point of meds for ADD as it goes against my inner inclinations but I fear he's falling more and more behind in school and there's not many choices left in my arsenal. I'm willing to give it a shot but if the side affects are too great I'll just stop. I suppose I won't know until I try!

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Hi again, ds already on DHA, I do have him spin on disc in the morning before school (helps with sensory regulation), I do believe exercise can help tremendously with focus, however affects last less than 2hrs, and needs to be interjected throughout the day, which kids get very little of in school these days. He really fades in the afternoons. He sleeps great 11hrs, no problem there. I guess he's just a complicated child with the usual alphabet soup of disorders- anxiety disorder, ADD, SPD,PANDAS,speech delay, GI issues, allergies and ezcema. I have tried all the natural approaches - DAN protocol, rotation/elimination diet, chelation, supplements etc.(at huge expense too) It is with great reluctance I've come to the point of meds for ADD as it goes against my inner inclinations but I fear he's falling more and more behind in school and there's not many choices left in my arsenal. I'm willing to give it a shot but if the side affects are too great I'll just stop. I suppose I won't know until I try!

 

completely understand...

and...for my ds ...against most advice i had to start my son on singualair and the procede with allergy shots....not decisions i took lightly.....

but i weighed everything...ds does not have mood issues and started with low dose of 10 mg for 80lb kid...and have since with seeming success with allergy shots..lowered sing to 5 mg...will keep him there for allergy season and hope to remove it entirely around June

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