PANDAS Episodes

[Suzan]

So... dd8 had surgery over the weekend (I mentioned it in another unrelated post so you may have read about it). I'm getting a little confused about PANDAS symptoms and episodes. It seems like anything that happens to her can cause an "episode". I don't know if I can even write my thoughts very well about this. This may make no sense what-so-ever....

 

The day before she was taken to urgent care, dd6 refused to play with dd8 and dd8 was frustrated when trying to get into the house from the car (she still could not walk at this time). She started hitting herself in the head and face, rolling around on the floor, crying, angry, whining, laughter (the kind she gets when she does not feel well), something that looked like facial grimacing, wild looking eyes, could not pick out her change of clothes without similar reactions. She could not stop. Somehow she managed to snap out of it and have a good dinner. Later, very tired and could not get comfortable. She had a twitch like a muscle spasm in her hurt leg (thigh) that would not stop.

 

The next day we find out that her appendix needs to be taken out. The urgent care doc presses around on her tummy and after a while, dd says she thinks she can walk, and she does (?!?). So she gets her appendix out, all kinds of drugs in her system and she starts to go nuts again. More of the same behavior as above.

 

By the time we get home, she's horrible, angry, unreasonable, unable to control herself, crying that she just wants to be happy again, that she does not feel well. I start her on an anti-fungal in desperation, stop the codeine. Next day (today) much better (thank the Lord).

 

Glutened.... She's gluten sensitive, possibly Celiac. When she has gluten by mistake, she has very similar neurological/behavioral reactions. She had some burning poop tonight, a sign of gulten so now I watch to see what will happen.

 

Between PANDAS. Candida and Gluten, and probably any other virus or bacterial infection, I don't know whether I'm coming or going. I don't know whether to up the antibiotics, push the probiotics, search for hidden gluten, call a psychiatrist. It only takes a couple of hours before I realize I'm completely afraid of my daugher again. I'm so sad.

 

Susan

[ShaesMom]

Hey Susan,

 

I know you are likely already in bed for the night but I just wanted to say cyber HUGS! I'm keeping you in my prayers and please know that even though I can't physically be there to help you that you are definitely on my mind.

 

Sam

[pixiesmommy]

Hugs from me too. ((sigh)) I wish I knew what to tell you. I wish there were a way we could all really get together and vent and take a breather and maybe get some insight. Wouldnt' it be so great if we could just hit the "pause" button on our kids and all of us as parents gather in a room with coffee or whatever and sit around with Dr K, Dr Latimer and Dr Swedo (and a bunch of really good allergists, immunologists, psychologists, nutritionists, homeopaths, etc.) and just figure it all out?

 

(((HUGS)))

Manda

[ShaesMom]

Hugs from me too. ((sigh)) I wish I knew what to tell you. I wish there were a way we could all really get together and vent and take a breather and maybe get some insight. Wouldnt' it be so great if we could just hit the "pause" button on our kids and all of us as parents gather in a room with coffee or whatever and sit around with Dr K, Dr Latimer and Dr Swedo (and a bunch of really good allergists, immunologists, psychologists, nutritionists, homeopaths, etc.) and just figure it all out?

 

(((HUGS)))

Manda

 

I said the same thing last night to someone in a pm. I think we should organize a cruise or something and pull together all the experts and have a vacation and pandas conference.

[familyof4]

She very well could have reacted badly to something they gave her for pain after her surgery. I have a friend who's daughter had a complex leg fracture last year and she was so not her self and so awful in the hospital that they called for a pych consult and called social services in. It turns out she reacted badly to a pain med she was being given. ( I had a cousin who was hauled off to a pych ward after her c-section and it turned out it was also a bad reaction to a pain med - I wish I could remember which one.) Additionally many meds use gluten as a form of starch - (For example some lots of chewable tylonal and walmart brand of chewable motrin). I would look up what pain meds they gave her for her surgery to see what the side effects could be. I would also carefully review anything she has been given since she got home for gluten.

 

I hope she is doing better today,

 

Heather

[colleenrn]

Susan,

If she has had that reaction to gluten before, it may be the meds she received in the hospital. There are lots of meds (have not found a comprehensive list yet, but I am looking) that contain gluten. Get her medical records from that day and the meds they gave her should be listed.

 

Colleen

[Kayanne]

Lots of positive wishes are being sent your way....I'm sorry that your going through this.

 

Did you ever find a good immunologist to help you interpret the test results that you had gotten?

 

It really seems that a lot of children are getting help by tackling this from an immunology front.

 

Also, didn't your daughters test positive for vaginal strep recently? Do you feel the infection has cleared?

 

When you consider that PANDAS is an immune response that attacks neural tissue, then you have to remember that the antibodies take time to subside, and then healing can occur.

 

To top it all off (sigh), you need to try to determine if something about the surgery may be causing this....lots of hugs to you.

 

Karen

[Mustang Carole]

HI Suzan,

 

Medication given for anasthesia for surgery can definately affect your child, and it takes time for it to

get out of the system, also, she is on more meds for pain, etc. She needs time to rebalance her system

to normal state. Meanwhile, you can help her, continue a strict gluten free diet, lots of rest, and make

sure her kidneys and bowels are working well...daily BM's to detoxify and pass stuff out of her body, rather

than be recycled from constipation.

Support her immune system by cooking from scratch with natural organic herbs instead of boxed mixes

full of additives causing free radicals in the body. Be sure she is getting enough vitamin support for healing,

the usual Vit D and C, etc.

Give her lots of hugs and one from me.

 

Hope for healing,

Mustang Carole