Why is PANDAS considered an ASD?

[3bmom]

Jag 10...that gave me chills. I thought I was the only mom who enjoyed the rare fever in my son. Just the thought of it tugs at my heart.

 

When my DS son was diagnosed in 05 they said PANDAS but I think if he wasn't a social butterfly it would of been Autism. The hospital didn't know what to do so I studied Autism since I saw similarities. I see it as a Venn Diagram. When he had a severe flare in 2011 the Dr. that saved his life was an autism Dr. He wrote the book, "Myth of Autism", Dr. Michael Goldberg. He says its all the same with different degrees of severity but we need to lose the word Autism and genetic disorder. We have put kids in this label box and put a lid on it when it is immune dysfunction creating inflammation in the frontal lobes of the brain.

 

He also says the new health care will eliminate medical treatment for Autism since it isn't under the ICD-9 code. Anyone else have their Dr. mention this? He is very upset because he has helped so many kids with antibiotics, antivirals, and diet.

[peglem]

So, is there an ICD-9 code for immune dysfunction and inflammation in the frontal lobes? Just don't call it autism-call it what it really is...MHO.

[Hrosenkrantz]

jag -- confused -- how does a fever make the kid more "normal/non autistic?":?

[JAG10]

jag -- confused -- how does a fever make the kid more "normal/non autistic?":?

I don't know exactly. Dr. T has an alternate fever response theory you can search here so I suppose it is somehow related. The point is this....it's a clue, a sign that they can be better. My dd13 was never diagnosed ASD, but ADHD and lots of word retrieval issues. Once pandas was in motion, she NEVER got fevers-which is NOT normal! So rare, I remember in 3rd grade she spiked a fever from a bad UTI (that ironically came from bathroom behavioral issues and urinary frequency!). Anyways, from that fever and subsequent antibiotic prescription that followed, her conversation was so easy and clear, her vocabulary so robust, her behavior so...typical. How could I not notice and ask myself...what is this all about and how do I get more of it????

 

The reason I mention this to some parents of children with autism is because I want them to think about it (and perhaps get chills like 3bmom) and ask themselves, now why would that happen and not just shrug it off. Some people speculate that ALL autism is some combination of assault on the immune system and resulting degrees of dysfunction. I hope they are right. If it was my kid and I saw anything that resulted in my child speaking for the first time or a marked improvement in their behavior, anything at all that let me know better was possible....I'd keep looking until I was convinced otherwise. That's why I mentioned rolling them in poison ivy so they would be prescribed steroids.....how do they respond?

[Hrosenkrantz]

Very interesting. Language issues has been my son's primary issues for years, before PANDAS (he was diagnosed with something called mixed expressive receptive language disorder at 4). Of course, when pandas hit his language went south. He just finished five weeks of steroids and i keep saying it seems that I've seen more gains in language from five weeks of steroids than i have from four years of speech therapy.

[JAG10]

Very interesting. Language issues has been my son's primary issues for years, before PANDAS (he was diagnosed with something called mixed expressive receptive language disorder at 4). Of course, when pandas hit his language went south. He just finished five weeks of steroids and i keep saying it seems that I've seen more gains in language from five weeks of steroids than i have from four years of speech therapy.

HA!!!! I completely agree with you! I am a speech-language pathologist, therefore my dd13 LIVES with an SLP and steroids as well as IVIG resulted in improvements that far exceeded anything else.

[SSS]

My daughter never 'changed' from running a fever, and would have month long time periods of running low grade fevers

(99-100 degrees, sometimes morning, sometimes afternoon) w/ no other illness type symptoms.

 

I read Dr. Goldberg's book, and also had my dd w/ a biomedical Dr. trying to work on gut health/ immune system/ heavy metals from vaccinations before we realized PANS.

 

Inflammation seems to be the core issue, IMO. Whether it's coming from bacterial infections, viral infections spiraling out of control,

or damaged intestines/ leaky gut letting food proteins out into the blood stream to have antibodies go on the attack.

 

As I am sure many can relate,

I can ask 10 different Dr.s their opinion on my daughter

and get 10 different answers.

[3bmom]

This is just my observation but during a high fever, which is rare I think the immune system is actually doing its job instead of attacking the brain with friendly fire. I wish they would take 1,000 kids on the spectrum and run the various tests for infections and immunology. It would not cause harm and it is evidence based science. Parents here on the forum are up in arms searching for answers but what about the 1,000's of others? I just don't understand.

 

Also there is not an ICD-9 code for NIDS, Neuro immune dysfunction or anything similar and he feels with the new medical "standards" a line will be drawn and he says he won't even be able to prescribe an antibiotic. I asked another Dr and she said it was true. I can't imagine it but I have gone to an ER with all my DS records and they flat out refused blood work and I still cant wrap my head around it.

Have your Drs said anything?

[cara615]

This thread is amazing because it prompted me to ask my good friend how her daughter (who is has ASD) acts when she has a fever. My friend told me that her daughter is extremely verbal and "present" when she runs a fever. This is incredible. She is now going to explore the possibility of an immune system dysfunction in her 5 year old instead of just sitting back with the ASD dx and getting her services. I think the services are great and needed but maybe she can help her daughter even MORE by getting to the root of the problem???

[cara615]

One more thing I want to comment on is that I'm assuming all these specialists would be extremely expensive over time. I know we have spent over $5K in just 6 months trying to figure out my son's allergies, methylation, gut dybiosis, etc. So for a parent that is low income, this could be an incredibly difficult journey.

[Hrosenkrantz]

<<So for a parent that is low income, this could be an incredibly difficult journey>>

That is why I bet lots of lower income kids are just mislabeled and never properly treated.....

[JAG10]

Yes, cost can be an obstacle. There is a great thread on that too here, I think Vickie started it? Maybe someone else remembers.

 

About ACA, I was listening to Rand Paul the other day. He said the number one thing you can do to survive ACA is to find an in-network provider who will be your advocate. I feel very fortunate that Dr. M is our family physician in our town. My dd13 is currently on antibiotics (doxy) for her acne. There is much anxiety about the ACA. We will need to stay focused, work individual obstacles to the best of our ability and use our creativity to obtain what our children need to be healthy.

[Hrosenkrantz]

So i reached out to a friend who ha a kid diagnosed with pretty significant asd and suggested she pursue autoimmunity/steroids. One problem: her doctors don't believe the kid has an autoimmune issue and a consult wit ha doctor who might is prohibitively expensive.

[SSS]

The 'problem' with steroids is, if there is a current infection in the body, the steroid shuts down the immune system and can therefore allow that infection to flourish.

How many children labeled ASD do you think have leaky guts/ gut dysbiosis, with an overgrowth of yeast and bad bacteria?

A lot.

A short steroid burst was NOT good for my dd.

However, 1 of her IVIG's did give us great improvement- until it wore off.