Jump to content
ACN Latitudes Forums

questions about adhd and more


Recommended Posts

Finally saw dr. B yesterday. I feel like someone is finally taking a look at the whole picture. I feel relief, but still worry.

 

He said he wants my son to get more ivig since he is back sliding a bit. He said kids rarely get better with just 2. He did tons of labs and added zith to the augmentin.

 

If that doesnt help, steroid burst is next.

 

My son saw his psychologist today. He says he thinks my son has adhd unrelated to pandas. I agree but do think pandas makes it worse. But he said thats why my son doesnt like school. He has a hard time being told how to think. He suggested a non stimulantlike straterra. Any

Opinions? The doc is pandas friendly, and was.the only person who believed me in the beginning. I think it might really help. Adhd runs in our family too.

 

 

And my odd dx with mild pandas :(

Link to comment
Share on other sites

Gosh--I'm so sorry to hear this. Are you reporting to the NIH so they know that their protocol of 1-2 IVIG will likely NOT be enough?

We have not tried meds for ADHD yet, but dd doesn't like school (and we homeschool)---she just doesn't like having to sit and focus on things (unless of course she is interested in it, which is Typical for adhd kids). I think you could ask 100 people here, and anywhere, and find that what works like a dream for 1 kid is a nightmare for another. I know it's cliche, and us pandas parents don't tend to do well with cliches or ambiguous answers, but I think it will just depend on your child.

 

Interesting about adhd unrelated....I felt that dd's first signs WAY BACK were a bit of hyperactivity....pre-"pandas"---or was it????????

Link to comment
Share on other sites

IYeah we check in to nih. They made it clear this is a study only and treatment long term is on our docs here , they have been very attentive. They are only trying to prove Ivig works in acute pandas and thats it. I do not regret going at all. I also understood the imitations of the study before signing up.

 

Elojmom,

 

My son hates kindergarten and my psycholigist explained it well. With all the racing thoughts its difficult for them to be told focus on this. I just hope we can get this sorted out before 1st grade.

 

they have to start somewhere.

 

But i will do whats in the best interest of my son always.

Link to comment
Share on other sites

Hi - just thought it worth a mention but sensory processing issues can look a lot like adhd and for us sensory comes hand in hand with PANDAS with many, if not all, flares.

 

Also, my dd is a classic onset/presentation type child. My ds is not. If it weren't for his sister's dx, it is unlikely he would ever have gotten dxd and, I suspect, he would have been labelled ADHD and/or ODD but he absolutely tanks with illness and all signs of ADHD and ODD type behaviours disappear when he's at baseline.

 

I'm not saying that the PANDAS is the cause of the ADHD behaviours that you're seeing but I'd be super suspect. I have also noticed with my kids that we can have layers of behaviour. When one layer goes, you can still be left with another behaviour which, to some eyes, might shout 'co-morbid'. However, I know that when at baseline ALL the symptoms go and that, for my kids, what could appear to be one disorder with some co-morbid other(s), is in fact, just infection triggered neuropsych changes.

Link to comment
Share on other sites

Hi - just thought it worth a mention but sensory processing issues can look a lot like adhd and for us sensory comes hand in hand with PANDAS with many, if not all, flares.

 

Also, my dd is a classic onset/presentation type child. My ds is not. If it weren't for his sister's dx, it is unlikely he would ever have gotten dxd and, I suspect, he would have been labelled ADHD and/or ODD but he absolutely tanks with illness and all signs of ADHD and ODD type behaviours disappear when he's at baseline.

 

I'm not saying that the PANDAS is the cause of the ADHD behaviours that you're seeing but I'd be super suspect. I have also noticed with my kids that we can have layers of behaviour. When one layer goes, you can still be left with another behaviour which, to some eyes, might shout 'co-morbid'. However, I know that when at baseline ALL the symptoms go and that, for my kids, what could appear to be one disorder with some co-morbid other(s), is in fact, just infection triggered neuropsych changes.

 

 

i agree with dut. . . also wanted to mention that i don't have the numbers now, but believe it is quite proven that anxiety is more common than adhd. so, certainly could be adhd for your child but could be many other things at play as well if he has known pandas.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...