Follow up with doctor

[Robinhubb]

So at the doctor he says pandas seem unlikely. So said maybe cough syrup or tesslon perls induced phycosis. Even said my daughter my need to stop taking cough syrup all together. She hasnt had any in 3 days. 

Anyway he did say he would order prozac.  I was livid. Im sorry to step on anyones toes, but how do i start my daughter on the big pharma and shes only 13. Its so scary. I will be trying to do things myself. The intrusive thoughts are paralyzing to her..  also we found some mold in our bathroom and will be working on that this weekend. Thats not helping. I feel like i may need therapy when this is all done.this is scary and im trying to still focus on my newborn and my 11 year old son. Any help would be awesome!

[MaryAngela]

That is so disappointing!  I’m really sorry.  For what it’s worth, we had about 10 doctors either say that it was “unlikely” or flat out that my son did not have PANS, without even running any tests.  His integrative psychiatrist ran the Cunningham Panel, which was what he used to get IVIG approved.  I can’t imagine what you are going through dealing with this and 2 other children (especially with a newborn).

I will send you a personal message with my email if you want some insight on the Prozac   

What state are you in?  Maybe someone can suggest a PANDAS/PANS doc near you.

[Robinhubb]

im in texas..only 2 of them and one doesnt take insurance and cost 1000 an appt

[Cmac]

I’m so sorry you’re dealing with this—it’s heartbreaking and overwhelming. My now 8 year old son was diagnosed last August—his triggers were strep and myco p. He was on daily antibiotics for months —several different ones and combo ones too—before we started to see improvement. He battled anxiety and OCD—rituals and intrusive thoughts. Has she been tested for myco p? I know you said you’re in TX—maybe a PANDAS doc could do a phone consult with you and order blood tests that your local pediatrician could do? And unfortunately most of the PANDAS specialists don’t take insurance and do cost a fortune!

Oh, and not sure if this really helped or just coincided with him getting better, but cutting out gluten and dairy seemed to make a difference. They both can inflame the body and since PANS/PANDAS is an autoimmune disorder it makes sense. As it was explained to me the problem is two fold—getting rid of the infection and bringing down the inflammation.

Also does she seem to get any relief from Motrin? That can help with inflammation too.

Good luck. You will get through this.

[Robinhubb]

This is all new to me. She keeps saying she wants to go back to a week ago. She wants her mind back. Yes everything is so pricey.

[Cmac]

Hang in there—you are going to find her the help she needs.