Jump to content
ACN Latitudes Forums

How do we know if it's PANDAS?

Satara

By Satara
in PANS / PANDAS (Lyme included)

 Share

Recommended Posts

Satara Contributor

Satara

Posted
Posted

Hello everyone,

 

Our eight year old son has been getting progressively worse over the last 9 months with

- vocal tics

- weird mood swings with giddy giggly moods/rages/frightening outbursts

- sensory issues

- ADHD

- Personality changes

- negative thoughts

- sleep problems

- food reactions

- fixates on subjects.

- manic behavior

- red ears and face before and during reactions.

- food triggers some reactions.

 

He has the preliminary diagnosis of neuropsychiatric disorder NOS/ADHD/NVLD, sensory issues, and anxiety. We have been through three assessments with no treatment and no definitive diagnosis (just guesses). They want to put him in an inpatient facility for a month so they can observe him. How do we find out whether it is PANDAS???? This has been absolutely horrifying. The only thing that has helped is keeping his blood sugar stable and watching what he eats. So no processed flours/sugar/preservatives/colors etc.

 

The other thing is that his brother has had a mild vocal tic since he was five and over the last nine months has progressively developed other motor tics/moodiness. The onset time seems very suspicious. The doctors think it's a coincidence that their onset symptoms were at the same time even though they are three years apart. We live in Delta BC canada (near Vancouver) any suggestions of doctors that can help us? We have been to children's and got referred out and then were told that the group we were referred to can't help us because he doesn't fit any specific profile ie they can't treat it if they don't know what it is. AAARRRRGGGGG this is soooo frustrating. I feel like no one is listening. We did see a DAN naturopath and are waiting on the results.

 

Thanks for any information

Satara Contributor

Satara

Posted
  • Author
Posted

Beesknees, Yes this all came on after Christmas last year. Over time the symptoms have been increasing. I am going to have to get copies of his medical records because I'm not good at remembering when things happened. We did have a nasty cold/pneumonia last winter that had three of us put on antibiotics and his brother had strep (he may have too but his symptoms were mild). What does pneumonia do?

 

Yes we are about 2.5-3 hours from Seattle.

 

Thanks for the information.

nicklemama Mentor

nicklemama

Posted
Posted

As difficult as it may be, you are probably going to have to see one of the PANDAS experts. Two will do phone consults. We went everywhere looking for help and answers. I just couldn't believe a boy who was perfectly fine could be so 'sick' after having the FluMist. He had most of the symptoms/behaviors you list above plus a lot more. It took us a year to figure out what was wrong w/ him and get the proper PANDAS diagnosis.

LNN Grand Master

LNN

Posted
Posted

You may also want to post this on the lyme forum of ACN. There are 2 or 3 members there from Canada and may have doctor suggestions for you. While you are looking back to records, you may also want to look for any other medical events or changes to the environment (did you have a water leak - which might indicate mold), add a family pet, did anything change in the months just prior or around the same time?

kimballot Veteran

kimballot

Posted
Posted

Satara -

 

I want to echo the others who have suggested consults with a PANDAS expert. Get your medical records and all of your kids medical records (from birth if possible) to have on hand.

 

Once a child has PANDAS, ANY infection or inflammation can trigger an exacerbation - including:

Strep throat, Upper Respiratory Infection (URI), Virus, influenza, walking pneumonia (mycoplasma), sinusitis, impetigo, lyme diseasen - even allergies. A real clue is if you see a pattern of behaviors improving with antibiotics.

 

You said you all had a nasty cold/ pneumonia last fall - have you all been tested for mycoplasma? Did you do a short (10 day or so) course of antibiotics? Do any of you still have a dry cough that seems almost asthma-like? You could still have mycoplasma lurking in the family and the boys could be reacting to that.

 

You are going to have to work hard and be strong to get a proper evaluation for your children.

 

best wishes

HT's Mom Collaborator

HT's Mom

Posted
Posted (edited)

I remember seeing this video a couple weeks ago, when someone posted it on the forum. It involves a family in BC, so maybe you can find them somehow and find out what doctors finally helped them. It does sound like PANDAS to me. Having strep and bad colds last winter just when this started is unlikely to be a coincidence.

 

http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20110809/bc_pandas_therapy_110809/20110809/?hub=BritishColumbiaHome

 

A PANDAS expert is the right course, but there is lots of information on this forum for the proper testing and information to give to your local doctors, so they can help support the treatment/efforts of your PANDAS doctor.

Edited by HT's Mom
Satara Contributor

Satara

Posted
  • Author
Posted

Hello,

 

What do we do now?

 

HT I watched that a couple days ago it was pretty tough to watch. As usual the media dropped it after the treatments so I'm not sure how it all went. I will try to find them. I am going to go through the dr I know at Children's and see what we can do.

 

KimBallot: He had a stomach flu last week and it was an absolute nightmare week for us. He was all over the place with his mood and raging. I thought it was due to his blood sugar levels. We have noticed a huge correlation between his blood sugar and moods/rages. He's not diabetic but we have to feed him like he is.

 

LLM I will thanks.

 

nicklemama what is flumist?

 

Beesknees Thanks for all the information.

 

 

Did your kids have similar symptoms? How did you get the doctors to listen??

kimballot Veteran

kimballot

Posted
Posted (edited)

Satara - if you've not done so already, keep a chart of his behavior, his illnesses, and his meds. You can do a simple rating chart for behavior - pick a few that tend to be problemmatic (ex: sleeps alone at night; gets stuck on particular thought; Has tics; Goes to the bathroom frequently). Each night, rate it as something like 1= Normal (no problem) 1=problems only I would notice 3= problems we could live with 4= problems anyone would notice and we could not live with....

 

this will help you to make sense of things.

 

The family in BC got treatment. http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20110809/bc_pandas_therapy_110809/20110809?hub=BritishColumbiaHome

 

Contact his Mom for help.

Edited by kimballot
Satara Contributor

Satara

Posted
  • Author
Posted

Satara - if you've not done so already, keep a chart of his behavior, his illnesses, and his meds. You can do a simple rating chart for behavior - pick a few that tend to be problemmatic (ex: sleeps alone at night; gets stuck on particular thought; Has tics; Goes to the bathroom frequently). Each night, rate it as something like 1= Normal (no problem) 1=problems only I would notice 3= problems we could live with 4= problems anyone would notice and we could not live with....

 

this will help you to make sense of things.

 

The family in BC got treatment. http://www.ctvbc.ctv.ca/servlet/an/local/CTVNews/20110809/bc_pandas_therapy_110809/20110809?hub=BritishColumbiaHome

 

Contact his Mom for help.

 

I can't find contact information for his mom. That is a great idea keeping track of it all. It is too bizarre and maybe it would help the doctors get a clearer picture of what is going on.

 

Thanks

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
×
×
  • Create New...