Ridilin disaster!

[JoyBop]

It was recommended to my son at the NIH to trial a stimulant, with out doctors blessing, of course. Today we tried our 80 lb 8yo son on 10 mg of short acting ridilin. What a disaster!! All I can say is, thank goodness its the short acting dose!!! Oh well, it was certainly worth a try!!

 

I supposed that is proof that it's not typical adhd as stimulants stimulate the frontal line where adhd patients lack stimulation. The way I understand it, pandas patients experience adhd like symptoms due to excess chemicals in ither parts if the brain.

 

I totally understand why they recommended it though as we do have another child with classic, severe adhd, and we had our oandas son worked up for it several times preceding the big onset. Perhaps indicating that he could have classic adhd on top of everything else. But in all honesty, I think the onset if ADHD came in with the mild pandas symptoms with the previous strep infection that occurred 8 months before the overnight severe onset.

 

Does anyone here have any luck with stimulants?

[dut]

Hello.

 

Just a thought but did anyone at NIMH suggest you revisit your other child's dx. It has been suggested that sibling incidence rate can be as high as 40% and, as we all know, PANDAS/PANS can present in many varied ways.

 

We have a classic presentation dd but a ds who could have easily have been dxd ADHD. Only in the last 6 months has he started showing more of the OCD and tics during his flares. So he's had maybe 4 years of hyper/impulsive type flares alone.

 

 

[MomWithOCDSon]

Because our DS's primary behavioral presentation . . . and flare go-to . . . is OCD, our psychs have long warned us to stay away from stimulant meds. Say it only tends to increase/ramp up the anxiety and OCD. Even Sammy Maloney was given Straterra -- a non-stimulant ADHD med -- and for a brief period my DS was prescribed Intuniv, another non-stimulant med.

[JoyBop]

DS was diagnosed with PANDAS PLUS by Dr. Swedo and the team without a doubt. He was never adhd before pandas. I have 4 children and only 1 one of them has adhd. There is no question as to wether or not my child has pandas. We had also tried intunive and clonidine that weren't helpful. I thought trying the stimulant was a reasonable trial considering our family history. Especially since the adhd symptoms don't go away between flares. Other symptoms such as OCD and anxiety don't go away completely either but he is able to hide those symptoms whereas the hyperactivity is impossible to ignore. . We decided against stratera bc SSRIS made DS suicidal and we don't want to revisit any of that. Ridilin was the shortest acting safest drug to try and I'm glad we did. But unfortunately it wasnt a hit!

[3bmom]

Intuniv worked for our PANDAS son who no longer could get organized. It's helped a lot except Math ability has not returned.

Our oldest was very hyper but did well in school. I always had him out playing about 2 hours a day. We found food dyes were a major factor for hyperness way before the studies came out.

 

Have they done the alcat testing? Any foods especially GMO and splenda type sugar substitues may set off hyperness from the cytocine cascade.

[JoyBop]

What is alcat testing? My son is obsessed with food now and using it as an escape. He eats everything under the sun and has no recollection of doing it. Working with therapist on that one. We will be tackling diet issues after his scope next month.

[dut]

Sorry, I didn't mean to suggest revisiting your PANDAS child's dx.

 

What I meant was, has anyone suggested reconsidering your child with the ADHD dx, just in case that is also a case of PANDAS/PANS.

 

Our ds with PANDAS could have easily been misdiagnosed with ADHD.

 

Sorry, if I was confusing

[MomWithOCDSon]

Straterra isn't an SSRI, so I'm not sure why there would be any commonality between reactions to SSRIs and that particular ADHD drug?

[JoyBop]

Stratera is an NSRI which can have similar effects as SSRIS. in fact, it's commonly prescribed for those with adhd and anxiety for that reason.

 

Our doctors have warned us not to try stratera because the SSRIS were so disastrous. We can now add stimulants to that list! So you are correct. It's not an SSRI. But it can have a similar effects, especially for those that have had bad reactions to SSRIs.

Meanwhile, WE ARE IN RIDILIN HECK!!! or maybe pandas HECK!!! The dose should have been long worn off by now but his symptoms are ramping up. Grimacing faces, agitation, temper tantrums. Baby talk, rage, karate chopping us. I know it's not his fault. We were doing SO well. I can only hope he wakes up tomorrow and this is all over with.

Lord help us!!

Edited January 19, 2014 by joybop

[Hrosenkrantz]

<Grimacing faces, agitation, temper tantrums. Baby talk, rage, karate chopping us. I know it's not his fault. We were doing SO well. I can only hope he wakes up tomorrow and this is all over with.>>

Joybop, I feel your pain. I hope and pray today is better for your guys...

[JoyBop]

Thank you! It was the worst experience for him by far. I would describe his behavior as manic. It got very ugly. He attacked one if his older brother out of nowhere and almost broke his nose and damaged his new glasses. ($500!!!!) his brother became enraged and struck him back. It was a horrible disaster.

 

If anyone has ever been on the fence about trying a stimulant, be very careful!! I would never tell anyone to take or not take a medication their doctor prescribed, but this was seriously the scariest thing I have ever seen.

[911RN]

MY DS13 was tried on 4 different ADHD medications with he was 8-9 years --NONE of them worked. He flipped out within 24 hours to 10 days on all of them!! They were short acting and he did go back to his baseline once the medication was out of his system. Hope and pray same for you. I can tell you stories about each one that are funny now but were NOT then. Very scary as you say. My son, too, went manic and catatonic to some degree. Funny thing was- it happened in 2 differnt MD office's on the same day:) This put the whole ADHD thing to rest and I have never had to revisit ADHD meds at any MD's urging again. Did do somewhat well on Intuniv for a year then started having problems falling alseep mid day and we stopped.

[JoyBop]

911 you were a very brave woman trying so many different meds. Although I too was desperate to help him regulate himself so that his life in school is t so difficult. I don't think I need to try another one, this one was scary enough. And it was such a small dose!

Yesterday was better but his OCD, pandas quirks (as I call them) and obsessive and negative thoughts are lingering. It's like a minor set back. But we are now fully aware that he does not have reall adhd, it's clearly a symptom that looks like it.

[airial95]

My son takes a low dose of Vyvanse, which is also a stimulant. We opted to add it when his impulsivity got to be flat out dangerous (still running into the street, taking off in parking lots, etc...even at 5 when he knows better). The first dose we gave him was a disaster - it ramped him up so badly you would have sworn he was freebasing pixie sticks. He did not stop talking for several hours.

 

However, after that first dose, he has done very well on it. We have been on it for just over a year and it has helped the ADHD a lot. His OCD and tics are managed by the abx and IVIG, but the ADHD was the one thing we just could never get to resolve.

[JoyBop]

Airial, that is very interesting! Can I ask a question? Did your son have signs of ADHD before the PANDAS began? Im trying to sort out who it might work for.

 

From what the I was told at the NIH, stimulants can and do work for some PANDAS kids. Unfortunately, my kiddo is WAY over sensitive to all meds we have tried, and to be honest, we are much happier to have "the real him". I have an older child who doesnt have PANDAS and is completely dysfunctional without his adult dose of Concerta. It is a miracle drug for him and we couldnt be without it. I was hoping for a miracle on this kid....I really was! What I saw was too dangerous and scary to try again. I also think it proves that he really doesnt have ADHD which is valuable in and of itself.