Is there a difference between ADHD and PANDAS ADHD?

[JoyBop]

Does anyone understand my question? So many of our kids have life altering ADHD, hyperactivity, impulsive behavior and executive functioning problems. But often our pandas kids seem to have it so much worse than classic ADHD kids, and the medications often don't work in the pandas cases.

 

I have a non pandas child with severe ADHD. Concerta is a lifesaver for him and while the med is active my child functions perfectly. My pandas child's biggest problem right now is his ADHD like behavior. It prevents him from having friends, participating in school, getting along with siblings, everything!!

 

Do you think there is a difference between reg adhd and what our pandas kids exhibi? I think the fact that the meds do the opposite proved that its a result of a different mechanism all together. ADHD is a result if the frontal cortex not getting enough stimulation. Pandas symptoms come from someplace else

 

Any thoughts?

[MomWithOCDSon]

Does your PANDAS child also exhibit anxiety/OCD behaviors?

 

For our DS, we discovered that what looked like ADHD was really just his trying to combat a whole host of compulsions and obsessions . . . he was distracting himself on purpose to avoid all the anxiety-provoking people, things and situations!

 

Once we got the PANDAS and OCD fairly well under control, the ADHD (actually avoidance) behaviors faded dramatically.

 

I don't know if that could be what's behind your DS's behavior also, but it's just a thought . . .

[SSS]

That's a good thought from Nancy.

 

I also thought:

How's his diet?

Overgrowth of yeast, food dyes, too much sugar, too much carbs

made my dd hyper.

Going GF/ CF made it easier to get more proteins and healthy food in her.

[JoyBop]

Well those are loaded suggestions.

Yes, there are tons of OCD and anxieties at play. When he is "well" (as in new baseline if well which is not really well but not in a flare ) he has mild to moderate OCD and anxiety. But the adhd like behavior is through the roof. When he is in a flare its a complete disaster with melt downs, freak outs, bizarre and strange hyperactive behavior. But "well" here looks like a child who has great difficulty doing much of anything. He appears happy and bouncy and has a happy go lucky attitude but he doesn't function very well do to hyperactive behavior, complete lack of ability to focus, silliness, and complete loss of self control. Like adhd on steroids.

 

As far as the diet goes, he's obsessed with food and eats everything in sight. He eats for comfort, and sometimes isn't even aware he's eaten. Example, in the airport on the way to the NIH he asked for a 12 inch sandwich instead of the usual 6 inch. I thought it was a healthy sandwich so I bought it for him. He devoured it in 6 minutes. A few minutes later he looked down at his empty plate and had a fit, accusing me of eating his sandwich. He really had no recollection of eating it and thought he was still hungry. I know, we have work to do! He's very lean but a little rounder than he used to be.

 

He has an endoscopy scheduled for the 13th if next month. They are looking for signs if allergy and inflammation, and if they find any he goes in a serious food elimination diet starting with dairy, soy, gluten, beef and food coloring since those were the foods he used to be severely allergic to. I'm dreading if that happens due to his love of food right now. It will really complicate things. But we have don't it before and we will do it again if need be.

 

The adhd like behavior is the one thing he can't hide a cross any environment. He does hide his anxiety and OCD in school. Perhaps you hit the mail on the head about the compensation.

 

Can anyone elaborate on that theory?

[SSS]

Used to be severely allergic to? As in IgA allergic? That is quite a few allergens. Or was it intolerances? (IgG?)

 

I don't remember your DS's age, but I think he is young, and it's easier to implement better food changes when they are younger.

Have you checked lately for yeast?

Eating, eating, eating trying to feed it is a sign.

Easy to get yeast imbalance if on antibiotics.

 

If you change the food you have available at your house, they are left to eat what's available in the house.

Edited January 27, 2014 by sss

[nicklemama]

I think they are different. My son's hyperactivity has diminished along the course of the way. I think when you can reduce the brain inflammation you will see a reduction in adhd. I'm not sure the same can be said of "true" adhd. Maybe I'm wrong and adhd kids also have brain inflammation. I do know that adhd meds don't work well in many PANS kids. We've never tried them.

[JoyBop]

Such great input!

 

First, DS is 8. His allergies were all non IgE and caused intestinal bleeding and swelling. Many hospitalizations when he was younger. Now they understand what it was, but back then there was no clue. Imagine having a child with severe PANDAS prior to 1998 and dr Swedos discovery. He is back under the care if a GI doc who works with all the pandas specialists so we are in great hands.

 

Please, tell me, how do I check for yeast? He's been on abx for so long. He does take a probiotic.

 

Also, Motrin helps tremendously. However, he was anemic, and I suspected it was the Motrin that we were using long term. I discontinued the Motrin and rechecked the CBC and all was restored. That confirmed that the Motrin was causing a bleed. Another reason he is being scoped next month.

I've been searching for cur cumin or another supplement to reduce inflammation bc I won't give him Motrin now for a period of more than 5 days.

[SSS]

For yeast, a urine test from Great Plains Lab or

Metametrix called an

Organic Acid Test

http://www.greatplainslaboratory.com/home/eng/oat.asp

you can combine it with a new IgG food allergy panel.

 

I understand how hard it can be with the food issues.

Gluten is very, very often inflammatory, and dairy.

It's much easier now days to substitute gluten and dairy, lots of options.

 

I also stopped giving my dd Ibuprofen, I confess, I used it a lot, but she started burping frequently, and

I worried about her GI tract. I had her 100% GF/CF/SF for a solid 2 years,

then put her back on all foods with digestive enzymes.

It seemed okay for awhile. About another 2 years went by,

and this year in school, not as sharp as she used to be,

pot belly again, I got lazy with fast easy prepare food,

and I wondered. But I waited, thinking she would fight me going back,

and more money on my huge groceries. But I felt guilty, I think I knew.

Finally, I put her back 100% GF/ CF about 6 months ago again,

and you know what?

No fight. I was shocked. The girl who loved pizza.

No fight.

And her thinking is clearer. Pot belly gone.

And her diet is much, much healthier.

As you probably know, it has to be 100%.

Just cutting down on gluten or dairy doesn't cut it.

That little bit still inflames.

There is also a very interesting theory about leaky gut

and the food proteins then hitting the blood stream,

causing an opioid affect on the brain.

Which causes the 'give me, give me more.'

[JoyBop]

If the scopes show inflammation and signs of allergy we will have to do an elimination diet, no choice. The harder part will be if the scope comes out fine, we will have to decide wether or not to do a special diet. We did take him odd dairy, gluten and beef for 4 months starting last Sumer but it made no difference in his behavior, just made him more anxious and obsessions.

 

I'm also wondering if the pandas induced adhd is the name if other families existence as well.

[SSS]

Your son is okay with getting scoped? Sounds invasive.

I would think it much easier to do an IgG food panel.

A scope will not tell you WHICH foods are causing the issues.

Yeast/ Candida is one way to cause a leaky gut, it can puncture holes in the GI tract.

 

Anyway, trying to help. No matter what the 'label' ie: ADHD, ADD,

getting the GI tract healed can be a huge part of the picture,

and you certainly seem to be struggling with this issue now,

and in his past.

[JoyBop]

SSS, my son has to be scoped to monitor for inflammatory bowel disease and eosiniphillic esophogitis, not your average food allergies. All of his triggers in the past have been non IgE mediated and blood testing and skin Prick testing will not help. Yes it's somewhat invasive, but is necessary for him and done under anesthesia. He's been having them done since he was an infant and is not a stressor for him.

 

The reason I post this on here is that it will be very interesting to see if the inflammation from his intestinal tract could be the culprit for the chronic pandas symptoms. His team of doctors think there is a connection. If they do find evidence of inflammation or strictures in his esophagus he wil have to eliminate foods one by one and get des oped until we find the culprit.

 

Does a one know there are standard lab tests for yeast? I know quest had a stool antigen test.

[qannie47]

Tumeric. There is a thread here somewhere about what a wonderful anti-inflammatory it is. Here is my thoughts on "true adhd" & "pandas adhd": When I think of my pandas child, when in a flare, his is adhd thru the roof. When not in a flare, he ranges from the model perfectly calm, focused child to mildly high-strung, but able to be easily refocused. Then I think of my nephew, age 21 is was just diagnosed with Bi-polar about a year ago. When you compare their symptoms when each is having a problem, THEY ARE IDENTICAL. So. My nephew is not dealing with Pandas, and my son does not have Bi-polar. The etiology of their own specific disorders are different, yet the outcome is much the same. I am staring to think that the term ADHD should no longer be listed as a disorder, but more considered a symptom....I can think of so many ways in which ADHD expression bleeds into so many other disorders, and yet the dx is not ADHD. If in fact there is truly such a thing that stands alone..... p.s son and nephew are not blood related.

Edited January 28, 2014 by qannie47

[JoyBop]

That's interesting qannie about your nephew. It seems that many mental illnesses can trigger an overstimulation episode to mimicking the symptoms of adhd. For my son it seems to be the thing that lingers, along with mild OCD and anxiety, but the hyperactivity seems to be the one that gets him in all sorts of trouble.

 

I'm beginning to think with PANDAS that a lot of doctors are listing adhd as one of the symptoms (as in diagnosis codes) to describe behaviors that they see, but this can be very different from getting an actual diagnosis of ADHD.

 

I just wish there was some way to help our kids with symptoms that othe kids can just pop a pill for. As I mentioned, I have another child with severe adhd and he pops his magic pill and has 10 hours of perfection.

[qannie47]

I agree. For example, ds with Pandas experienced no benefit from the supplement, 5htp, but his twin, non pandas, and a little add experienced great benefits from it. Better focus, less impulsive, and brighter mood. When I have read about the various neurotransmitters, it seems that too low/too high can cause the same symptoms. Also, I wonder if the key difference between a clear cut add or adhd issue and Pandas might lie with brain inflammation. If the brain is indeed inflamed, regulating the high/low of any neurotranssmiter, or manipulating the receptor sites might not matter, because the receptor sites will mess up the intake either or. So taking a something that increases or decreases transmitters would not help. That being said, i think adhd or add is just a symptom of what the real problem is....but I don't rule out different etiologies.

Edited February 2, 2014 by qannie47

[JoyBop]

Well put, as always Q!