Is this an exacerbation

[willowate8]

I'm new here and have some questions about our current situation. My son, 11 years old, has had PANDAS since 5. He has experienced rage,extreme anxiety, irrational fears, panic attacks, tics (shirt chewing), crippling obsessions, and developing adhd from his PANDAS. It the major hellish symptoms peaked each spring then faded.

 

He was diagnosed in Jan 2010, finally. He started on 250mg Azith per day, until breakthrough strep(with irrational fears/anxiety again), then switched to Amox/Clav 250. He hasn't had a major hellish outbreak since.

He did one steroid burst in 2010. Since, he has had ups and downs with ADHD, dysgraphia, continuing hyperness (between jumping,spinning and kicking)and being really distracted at school (not there when spoken to directly).

 

This spring, 2011, he had IVIG. He continues on the Amxo/clav. He was seemingly improving on a seesaw, until he got an ear infection this summer. Since then, he has seemed more hyper, kicking around the house literally when he has no other occupation. He also has had two real emotional outbursts of cryiing and one rage. NO anxiety, obsessions, panic etc. But since starting school, we also noticed his writing has gone bad again.

 

I am wondering if this sounds like an exacerbation or just another leg on the see saw of improvement. I expected the IVIG to take away all the symptoms and have no more exacerbations. He seems rather together, but he has started middle school and I really have no idea what the ###### is going on there. He has many teachers and they have no baseline of what he can and cannot do.

 

I feel lost and am doubting what I see in my child is ADHD or PANDAS. Do I need to add some psych counseling rather than meds? Anyone have some similar experiences, etc.?

 

 

On top of it all, my 9 year old has now developed anxiety over eating and contamination. He has not been the sinusy/ear infection child and hasn't had strep in years. Wondering what is going on with him also. He has no strep infection, but does have recurring issues with motility and reflux (being addressed). Could he have PANDAS too? We've been through similar anxiety with the 11 y.o, so are wondering what to do.

 

Thanks.

Jill

[Ozimum]

Hi and welcome!

 

For us the main signal that strep is back in our house is the rise in anxiety/OCD/intrusive thoughts...so in their absence I too would be wondering if something else is at play.

 

I'm responding to your post because in the last couple of days I've had conversations with some mums (I'm Australian - our spelling is different!) whose children have ADHD diagnoses. Yesterday one of them got test results back to discover her son has strong food sensitivities - in particular wheat/gluten, dairy and eggs. This is in line with what I've been reading about for many kids with ADHD. Another mum I know says the dietary approach has helped her ADHD kids hugely. (It's certainly helped my Aspie/PANDAS DS.) So if I were you, I'd be heading off to a good Biomed/DAN! doctor and getting some testing done. A good DAN! should know the protocols for PANDAS too.

 

A good book - Dr Ken Bock: "Healing the New Childhood Epidemics. Autism, ADHD, Asthma, and Allergies. The Groundbreaking Program for the 4-A Disorders."

 

I hope you can get some answers.