Pandas and ADD connection

[memom]

I may be loosing perspective here but.....Is is possible that a sibling of a Pandas kid also display behavior including difficulty concentrating, difficulty ordering thoughts, anger/rage, dilated pupils, depression....and it in fact is also Pandas? Has had documented strep in the past. All started with complete behavior change 4 years ago that has progressively worsened despite mental health care (was given the diagnosis of clinical depression though counselling and multiple med tries fell flat). This is a kid that until 17 was a star athlete, straight A student with honor classes and is now unable to get through one college class. Long hx of "stomach aches" dating back to 3rd grade but never interfered with school performance. No OCD or tics that I have seen. I am thinking he has been misdiagnosed. I do think he is depressed, but I think that is a symptom of his difficulties with fogginess and change in mental thinking and reasoning ability vs the cause. I am considering getting him Cunningham'd though know that may be confusing with not classic symptoms.

 

Those who have gotten the ADD diagnosis, how did that happen? Psych testing, or learning disability testing?

 

Thanks,

 

Think I'm going crazy with Pandas kid not yet responding to steriods/abx after 6 days, and this kid going down the tubes.

 

Ellie

[Megs_Mom]

I would call Dr. K (or email) at www.webpediatrics.com. He has at least some experience with possibly PANDAS teens, and may be able to help. Symptoms include stomach ache.

 

On another front, do you think he has OCD? Have you tried ERP therapy? This can be a hard disease to understand, but it does get progressively worse, and has so many faces.

 

I may be loosing perspective here but.....Is is possible that a sibling of a Pandas kid also display behavior including difficulty concentrating, difficulty ordering thoughts, anger/rage, dilated pupils, depression....and it in fact is also Pandas? Has had documented strep in the past. All started with complete behavior change 4 years ago that has progressively worsened despite mental health care (was given the diagnosis of clinical depression though counselling and multiple med tries fell flat). This is a kid that until 17 was a star athlete, straight A student with honor classes and is now unable to get through one college class. Long hx of "stomach aches" dating back to 3rd grade but never interfered with school performance. No OCD or tics that I have seen. I am thinking he has been misdiagnosed. I do think he is depressed, but I think that is a symptom of his difficulties with fogginess and change in mental thinking and reasoning ability vs the cause. I am considering getting him Cunningham'd though know that may be confusing with not classic symptoms.

 

Those who have gotten the ADD diagnosis, how did that happen? Psych testing, or learning disability testing?

 

Thanks,

 

Think I'm going crazy with Pandas kid not yet responding to steriods/abx after 6 days, and this kid going down the tubes.

 

Ellie

[EAMom]

I would Cunningham him.

 

I think it is interesting that both your kids had their worst symptoms after puberty (alhthough onset was b-4 puberty).

 

Also, has he had a recent throat culture? I would do that. Remember, he was exposed to strep from his sister. That probably made things worse.

[memom]

No OCD. His sister severe OCD, I recognize that with my eyes closed and hands tied behind my back. Personality change, episodes of dilated pupils (no drugs), poor concentration with acedemics, difficulty getting out of his own way to get things done, room disorganized like his brain (opposite to his normal).

 

Ellie

[EAMom]

Sounds like PANDAS to me.

[memom]

I think I should Cunningham him too. I will email Kathy for the kit.

I have not cultured him but could do that myself. I think I will consider skipping the ASO and Antidnase as those are such poor indicators.

[ShaesMom]

Has he been tested for food allergies or any other illnesses? Mono, for instance, which can be chronic. Has his immune system function been tested?

[thereishope]

If you suspect soley ADD or ADHD, a psychologist or psychiatrist can diagnosis that. But ADD and ADHD is also a symptom that many PANDAS kids have while in an episode. I believe Sammy from Saving Sammy has ADD but Beth said she doesn't know if that is a result of PANDAS. I remember reading that somewhere.

 

 

 

I may be loosing perspective here but.....Is is possible that a sibling of a Pandas kid also display behavior including difficulty concentrating, difficulty ordering thoughts, anger/rage, dilated pupils, depression....and it in fact is also Pandas? Has had documented strep in the past. All started with complete behavior change 4 years ago that has progressively worsened despite mental health care (was given the diagnosis of clinical depression though counselling and multiple med tries fell flat). This is a kid that until 17 was a star athlete, straight A student with honor classes and is now unable to get through one college class. Long hx of "stomach aches" dating back to 3rd grade but never interfered with school performance. No OCD or tics that I have seen. I am thinking he has been misdiagnosed. I do think he is depressed, but I think that is a symptom of his difficulties with fogginess and change in mental thinking and reasoning ability vs the cause. I am considering getting him Cunningham'd though know that may be confusing with not classic symptoms.

 

Those who have gotten the ADD diagnosis, how did that happen? Psych testing, or learning disability testing?

 

Thanks,

 

Think I'm going crazy with Pandas kid not yet responding to steriods/abx after 6 days, and this kid going down the tubes.

 

Ellie

[memom]

Not yet. He also has bad environmental allergies, asthma and has been diagnosed with exercise induced anaphylaxis (not exercise induced asthma, had 2 full blown anapylactic reactions to vigerous competative running events landing him in the ER. Has to premedicate for vigerous exercise). His sister has an appointment for next week to address the food connection, I think I will address having him tested as well).

[memom]

We spoke with the Psychologist he has seen in the past today and will ask him to evaluate him for possible ADD.

[bronxmom2]

I love the use of "Cunningham" as a verb.

[Stephanie2]

Ya know what? He may have PANDAS, but he also may have a whole host of other things that are biologically based (especially if he was once ok and now is taking a turn for the worst). If I were you I would get him to a good DAN doctor who will do a thorough work-up to see what the underlying illness is. BTW, both of my boys are doing the DAN protocol (which includes dx and tx of pandas) and I have to tell you that my 4 yo no longer has the severe allergies/asthma that he used to (and neither do I since I started doing the protocol). We used to land in the ER with severe croup, require abx, nebulizer and steroids with each cold. The day I walked into the DAN office was the day that we never had an asthma/croup/allergy attack again. We spent years with a traditional allergist who did more harm than good. The DAN turned it around in a month - no joke! To me it is a miracle, but just goes to show you that if you find a doctor who is willing to dig, they get to the bottom of things...

 

I have recently changed DAN doctors...here is a link to our new one and they are incredibly reputable (my friend's son came off the autistic spectrum after 4 months with them, I watched it happen right before my eyes):

 

www.icdrc.org

 

Best wishes, Stephanie

 

We spoke with the Psychologist he has seen in the past today and will ask him to evaluate him for possible ADD.

[memom]

Thanks Stephanie. He and his sister have appointments next week with someone who does this work. If nothing else, it should help with asthma, allergies, chronic sinusitis. That in and of itself should be a good thing. I am both excited and frightened about what will need to change in my kitchen......

[colleenrn]

Sounds very suspicious of PANDAS.

 

My 13 yo daughter has a "classical" presentation of PANDAS (OCD, tics, etc.....)

 

My 6 and 8 yo sons do not, but they are PANDAS. Their symptoms are ADD/ADHD, emotional lability (quick to anger and get frustrated). They could have easilybeen misdiagnosed as ADD/ADHD had I not had my "PANDAS radar" on b/c of the years of going through it with my oldest.

 

I would get a throat culture (72 hrs.), Cunningham's labs, AND it would do no harm to try to get him on a few weeks of a good antibiotic and see his response.

 

PANDAS has such a huge range of symptoms. Depression can be the main presentation. You don't have to have OCD and/or tics if you have some of the other symptoms.

 

Colleen

[Stephanie2]

We went gluten and casein free and it is not easy...6 months later I am still trying to find a variety of foods to feed my boys. BUT I really believe that going casein free is what did it for my son. I first eliminated milk, but it wasnt' until I eliminated ALL TRACES of milk/casein that the allergies/croup went away.

 

Good luck!

Stephanie

 

Thanks Stephanie. He and his sister have appointments next week with someone who does this work. If nothing else, it should help with asthma, allergies, chronic sinusitis. That in and of itself should be a good thing. I am both excited and frightened about what will need to change in my kitchen......