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Pandas / Diabetes

bws

By bws
in PANS / PANDAS (Lyme included)

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bws Enthusiast

bws

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Hi

 

I have a cousin whose child has been diagnosed with Aspergers at age 9 and Type 1 Diabetes at age 15.

 

Recently I was talking to her, and told her about my daughters dx of Pandas and how happy I am that she is not crazy, just sick etc etc... and she asked me to read her the symptoms of Pandas. So I read her to checklist from Dr. K, and with every symptom she was jumping more. Her son has had significant amounts of strep as a child. He has tics, movements he cannot control, OCD and anxiety that is taking over his life, frequent urination and many more. I told her to RUN to take the bloodwork and she is now awaiting results.

 

Questions: Is it possible to have Pandas for many many years (12!!) and still be helped significantly? Is age 16 too late for treatment (IVIG)?

Could Pandas or high strep levels cause Diabetes?

Is it possible that the bloods with come back OK and he could still have Pandas?

 

This cousin is at her wits end with this child, and does not have internet access. Please, any input here would be greatly appreciated.

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SarahJane Community Regular

SarahJane

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I don't know that there is a cutoff age for treatment. There was talk of Dr K doing IVIg for older patients on a post a while back. I'm on my phone & can't search easily but you could look or maybe someone else will have thaf info. (We see K for my 7 yr old son.). I have seen references to diabetes with PANDAS but no research that gives info. There was a post about diabetes on here recently too. Good luck to her. One thing I would wonder is what treatments/therapies has she tried & what was their effectiveness? That could help the clinical dx. Keep in mind her child may not have high titers and that does NOT rule out PANDAS. Other infections can also lead to PANDAS reactions (mycoplasma pneumonia, Lyme, etc...). PANDAS is a clinical diagnosis meaning a good PANDAS dr will consider ALL the symptoms & patient history vs relying on particular tests (there is no definitive PANDAS test).

 

(No Internet? I cannot imagine that. LOL!)

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rockytop Collaborator

rockytop

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I would suggest checking out GAD autoimmunity. It causes a problem that would attack the pancreas, causing type 1 diabetes, however, it also has been seen to cause neurologic and psychiatric problems.

 

Check out this article (some one on here posted it recently also, I think)

 

http://www.forbes.com/2010/01/12/autoimmune-disease-hallucinations-lifestyle-health-medical-mystery.html

 

 

it is called the girl who lost her mind.

 

My very sick child will hopefully be tested for this very soon!

 

Please print this article and have your cousin pursue it! I hope she kind can find out what has caused these problems for her child.

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bws Enthusiast

bws

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I don't know that there is a cutoff age for treatment. There was talk of Dr K doing IVIg for older patients on a post a while back. I'm on my phone & can't search easily but you could look or maybe someone else will have thaf info. (We see K for my 7 yr old son.). I have seen references to diabetes with PANDAS but no research that gives info. There was a post about diabetes on here recently too. Good luck to her. One thing I would wonder is what treatments/therapies has she tried & what was their effectiveness? That could help the clinical dx. Keep in mind her child may not have high titers and that does NOT rule out PANDAS. Other infections can also lead to PANDAS reactions (mycoplasma pneumonia, Lyme, etc...). PANDAS is a clinical diagnosis meaning a good PANDAS dr will consider ALL the symptoms & patient history vs relying on particular tests (there is no definitive PANDAS test).

 

(No Internet? I cannot imagine that. LOL!)

 

With a probable mistaken dx of Aspergers she has spent over $100,000.00 for different therapies, meds, special school, mentors etc etc. If this IS Pandas, what a pity on all those wasted years and money. She never even considered a physical cause. :(

(no internet due to principles)

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rockytop Collaborator

rockytop

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without the internet-- probably 90% of us would never had heard of PANDAS!

 

please have her check out GAD auto-immunity. I hope some day some factor is found that creates this auto-immune "perfect storm" that creates so much suffering in so many different ways. oh and then---- A CURE FOR IT!!!

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bws Enthusiast

bws

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I don't know that there is a cutoff age for treatment. There was talk of Dr K doing IVIg for older patients on a post a while back. I'm on my phone & can't search easily but you could look or maybe someone else will have thaf info. (We see K for my 7 yr old son.). I have seen references to diabetes with PANDAS but no research that gives info. There was a post about diabetes on here recently too. Good luck to her. One thing I would wonder is what treatments/therapies has she tried & what was their effectiveness? That could help the clinical dx. Keep in mind her child may not have high titers and that does NOT rule out PANDAS. Other infections can also lead to PANDAS reactions (mycoplasma pneumonia, Lyme, etc...). PANDAS is a clinical diagnosis meaning a good PANDAS dr will consider ALL the symptoms & patient history vs relying on particular tests (there is no definitive PANDAS test).

 

(No Internet? I cannot imagine that. LOL!)

 

 

Bood results for this child:

 

ASO 547

DNASE B 362

 

Does this indicate Pandas??

 

Child has had numerous streps in the past.

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peglem Grand Master

peglem

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Those titers indicate a recent past strep infection. Those are not the antibodies that disrupt basal ganglia function. In the face of frequent strep infections and aspergers symptoms there is a good chance that the 2 are connected. There is not a lab test (yet) for PANDAS. Its a clinical dx. If the aspergers symptoms improve w/ abx and/or motrin, there is a VERY good chance that it is PANDAS. Also, if the aspergers symptoms suddenly worsen w/ infection or exposure to an infected person.

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tpotter Veteran

tpotter

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I have a 15 and 18 yo, who both just got PANDAS starting in November. The 18 yo is also diagnosed with Asperger's. The biggest thing that has improved for him is his social skills. Massive improvement. My 15 yo is being helped by the IVIG, but now we have reason to believe that we did not knock out the entire infection/s, and are looking for additional co-infections (his spleen is enlarged, and wbc is low, plus ASO is elevated.) BUT, IVIG is definitely helping...just not holding until we find and kill off the **** infections!

 

But, in answer to your question, I truly don't believe there is any age limit to helping these kids with IVIG.

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  • 2 weeks later...
bws Enthusiast

bws

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UPDATE:

 

My cousin has seen Dr. S. last week, and called me today to report significant positive changes. Hopefully this is her answer. What a pity on all that time and money wasted.

 

WHY IS THE MENTAL HEALTH COMMUNITY AGAINST THIS DX?????

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