How do we know if it's PANDAS?

[Satara]

Hello,

 

Is PANDAS affected by diet? We have noticed that food is a huge trigger for Liam's "reactions" ie if his blood sugar is elevated/too low he loses it. He has been tested for diabetes and is fine. Have you tried the GF/CF diet? Any changes? I am sooo tired.

[peglem]

Hello,

 

Is PANDAS affected by diet? We have noticed that food is a huge trigger for Liam's "reactions" ie if his blood sugar is elevated/too low he loses it. He has been tested for diabetes and is fine. Have you tried the GF/CF diet? Any changes? I am sooo tired.

My daughter has blood sugar swings as well. I don't know if its PANDAS or something else. Generally speaking, PANDAS seems to make everything disregulated.

[Satara]

Hello,

 

Is PANDAS affected by diet? We have noticed that food is a huge trigger for Liam's "reactions" ie if his blood sugar is elevated/too low he loses it. He has been tested for diabetes and is fine. Have you tried the GF/CF diet? Any changes? I am sooo tired.

My daughter has blood sugar swings as well. I don't know if its PANDAS or something else. Generally speaking, PANDAS seems to make everything disregulated.

 

Is she on a special diet?

[kimballot]

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

I am sending you a PM

[peglem]

Hello,

 

Is PANDAS affected by diet? We have noticed that food is a huge trigger for Liam's "reactions" ie if his blood sugar is elevated/too low he loses it. He has been tested for diabetes and is fine. Have you tried the GF/CF diet? Any changes? I am sooo tired.

My daughter has blood sugar swings as well. I don't know if its PANDAS or something else. Generally speaking, PANDAS seems to make everything disregulated.

 

Is she on a special diet?

No, we did try GFCF for 4 years- I don't think it helped. We just try to make sure she gets something to eat every hour or so.

[Satara]

Is she on a special diet?

No, we did try GFCF for 4 years- I don't think it helped. We just try to make sure she gets something to eat every hour or so.

 

We are waiting to hear the results of his allergy/gluten/casein tests. I have no idea what I am going to feed him if he has to go GF/CF and yeast free and keep his blood sugar stable. He doesn't eat any refined flours/processed sugar/preservatives/colorings etc. It's exhausting feeding him and sometimes he refuses to eat and then it's a nightmare.