ADD Meds and Pandas

[SurfMom]

We are still just starting the process.

 

Before the grand episode that led us to the PANDAS diagnosis, Sierra had just been diagnosed with ADD and is still exhibiting severe inattention (new behavior).

 

Questions:

 

1. Did any of you see an onset of ADD or ADHD in conjunction with the onset of OCD/Tics?

 

2. When or did you begin ADD medications in combination with other treatments (abx, Motrin)?

 

3. Are any of you seeing that ADD/ADHD is more episodic in that it wanes as the other PANDAS symptoms wane?

 

Thanks in advance!

[kos_mom]

My DS is ADD inattentive type. But in one exacerbation he became extremely hyperactive for one or two particularly hellish months. He was already on adderall for the inattention, which didn't help the hyperactivity, and a switch to Ritalin extended release was disastrous. He wouldn't eat all day and became absolutely ravenous around ten at night, following extreme evening hyperactivity. Thank goodness that went away--its was quite enough dealing with all the OCD and tics. He still takes adderall with no apparent ill effects.

[momcap]

We are still just starting the process.

 

Before the grand episode that led us to the PANDAS diagnosis, Sierra had just been diagnosed with ADD and is still exhibiting severe inattention (new behavior).

 

Questions:

 

1. Did any of you see an onset of ADD or ADHD in conjunction with the onset of OCD/Tics?

 

2. When or did you begin ADD medications in combination with other treatments (abx, Motrin)?

 

3. Are any of you seeing that ADD/ADHD is more episodic in that it wanes as the other PANDAS symptoms wane?

 

Thanks in advance!

 

1. ADHD was my son's first diagnosis, leading to an alphabet soup of psych diagnoses.

2. We declined ADD meds due to bipolar symptoms and risk of triggering mania.

3. DEFINITELY episodic in nature, along with all other symptoms.

[rowingmom]

ADHD is one of DD11's Dx as well. We declined ritalin because of her motor/vocal ticcing. All of her PANS symptoms, as well as an inability to concentrate and a real decline in executive function, wax and wane with viral infections.

[MomWithOCDSon]

My DS has displayed ADD/ADHD symptoms as well, which vary between being more prevalent during exacerbation to non-existent when healthy, despite the fact that some OCD behaviors have proven to linger always and consistently.

 

Each of our docs have warned us that any stimulant-based ADD/ADHD meds such as ritalin will only exacerbate the OCD, so these are not a good option if your child has comorbid conditions or behaviors.

 

We tried a non-stimulant med -- Intuniv -- for about 9 months. Initially we thought that it might be helping, but it did make DS tired and lowered his blood pressure notably. We took him off because we couldn't see that it was having a positive impact on his attention issues after a while.

 

What we've found to be most beneficial, however, is zinc supplementation. DS takes a highly bio-available form of zinc (Opti-Zinc) twice daily, and it has helped his focus notably.

[kos_mom]

Nancy,

At one point DS was put on Tenex (older version I think of Intuniv), and he had the same reaction. I took him off after two or three weeks.

Ko's Mom

[MomtoJake]

1. Yes, definitely ADHD combined type

2. Did not begin meds and have not been recommended to begin by Dr. M. She has advised Magnesium Oxide and some Omega 3's

3. Yes it , for my son it is the first sign of an exacerbation to come and the last things to leave when it is over. You would not know that he is "ADHD" in between.

[EmilyK]

You would not know that he is "ADHD" in between.

 

That's true for my son and why I say he's not really got ADHD but rather looks like it in a flare up. Some of the hyperactive movement turned out to be complex gross motor tics. He also would try to outrun the tics - literally racing around - as a way to self-manage.

[MMC]

DD16 has ADD. DS14 has ADD, leaning towards ADHD especially in the evenings. This has made it challenging for both in school. DD16 is on Vyvanse and has no adverse affects with tics that we can tell. Tics are much worse for DS, so we have not tried much for him. I think we tried Intuniv to help with tics, but it did not, so we stopped. We are hesitant to try anything else with him, just because his tics are so bad. But, maybe we should try Vyvanse...it has been a very successful treatment for DD...she can stop it in the summer sometimes, but has problems if she misses a dose during the school week.

[lmkmip67]

DS, 9, was diagnosed ADHD just last week and we are on day 3 on Concerta. I do not believe we will be sticking with it. The first day he was SO tired. Yesterday, still really tired and dizzy. Oh, and GRUMPY, very angry. Last night he was awake from 1-until he went to school. I am trying today since they were out the last two days for conferences. A friend convinced me to give it a few days, but each day brings side effects that are not good. Not sure why it keeps putting him to sleep during the day, he is on the lowest dose, there is nothing lower. I Just don't think it is the right medication for him. I am looking toward lowering the prozac he is on instead, or trying another SSRI. THat does help a ton with the OCD. But can cause AHDH type side effects too, I guess.

[SurfMom]

MMC, when DD15 started to decline two weeks ago and we, teachers, and psych all thought ADD, Vyvanse was the choice. Since the full onset of PANDAS, we pulled her off all meds but I as she is getting over this episode the ADD is hanging in there hard. As a freshman, the work she is missing is mounting and she getting stressed about it so we try to start and within a minute she is up getting water, checking on the dogs....then she gets anxious about having to much to do.....and round and round we go. I try to pull her away from work hoping to do something to stimulate her energy level and thinking (like a brisk walk with the dogs) and other CBT tricks but so far we are in slow motion. Seeing the bigger picture, I am trying to get her to back away from the work altogether until I feel like we have the inflammation under control, but Miss Conscientious will have nothing to do with that plan of non-action.

 

Long story short, if we go back to meds. I was pleased to hear that you had to say about the Vyvanse in conjunction with the tics and looking forward to your updates. I'll let you know if/when we go back to that med or another and the effect it's having.