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Hello everyone,


My DD7 is suspected PANDAS/PANS and she's been taking prophylaxis abx for nearly 2 years. Overall she is doing rather well but with what seems to be minor relapses along the way but pleased to say NOTHING like the onset at 4.5 years old. Tics non-existent, sleeps and eats well, generally happy as long as she is in her 'comfort zone'.


She has periods of time when her senses and emotions are easily overwhelmed. Speech is a bumpy road - at best she has an occasional stutter, at worst she is an urgent speech therapy case as she struggles to get her words out. Her main symptom is anxiety. She has always been anxious and sensitive. At the moment she is extra anxious - mainly separation anxiety. Last night she sobbed as she explained she wishes she could go to the neighbours to play, she knows she is different from her friends in this way and can't really understand why she finds this so difficult. She says she feels sad and thinks about bad things when she's away from us. It's heartbreaking to hear and I just don't know how to help her. I think she needs professional intervention with the anxiety as it is interfering with her day to day life. I'm not sure if she's ASC or whether the anxiety makes it look this way as she has coping strategies to deal with her fears: the need to know what is going to happen next/tomorrow/the following day, what she will wear, who she will see. She plays with the same toys and draws the same pictures/writes the same stories etc. etc. I'm also not sure if the anxiety is causing the stuttering or whether the stutter is a physical mechanism of PANDAS. It's hard to make sense of it all!


Has anyone else's child received help for anxiety and did it help? I'm trying to understand how therapy can help with symptoms that are actually determined by a physical cause.


Any input would be helpful as we are struggling as a family currently.


Thanks for your help.x

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Well, you are getting to this early, so that should help. It is a good time to work with a therapist using CBT if she is cooperative. Anxiety is part and parcel of PANS/PANDAS so it's not surprising.


For anxiety, I recommend omega 3s. Specifically ones that have 90% EPA and 10% DHA. The high levels of EPA reduce anxiety, according to studies. I believe its 1000 mg a day. My younger son has been doing it (I wish the older one would but he hates swallowing anything) and doing better on it. Our brand is Minami Nutrition Plus EPA.


You may need to consult with your PANDAS doctor on this as well.

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Yes, this all sounds very familiar. I would agree with fuelforall that CBT for the anxiety, providing your DD is compliant and will undertake the "homework" with your help, will go a long way toward supporting her in reclaiming her own power and confidence in everyday tasks and activities.


As for the speech issue, we had similar issues except that, rather than standard stuttering, it was repetition of full words . . . three, four times . . . before he could move forward with completing a sentence. During the depths of his PANDAS, my DS could rarely complete any sentences at all. Yes, I think it's PANDAS. But it can all get sort of mixed up and cyclical when PANDAS is in the mix. She becomes anxious, so her thinking gets a bit confused, so her speech gets a bit confused, which in turn feeds the anxiety again, and on and on. The true trick is getting her off the merry-go-round of anxiety and anxiety-feeding issues.


CBT can help. Various supplements (particularly anti-inflammatory supplements) can help. OTC anti-inflammatories (Ibuprofen, Aleve) can help. So can temporarily "simplifying" her life . . . eliminating anxiety triggers that are not crucial. Soothing her fears about "being different." Pointing out to her the truths that everyone feels "out of sorts" sometimes, and its okay to take some time out from social activities to "chill." We've found great power in "normalizing" some of the anxiety . . . I think sometimes our kids get so sensitive to being "sensitive" and "anxious" that they tend to think that ANY amount of anxiety is applicable only to them, even when it can be a normal part of growing up (being in a new place, with new people, in a new situation, etc.).

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