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Question re: Siblings dx'd


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I'm hoping this post reaches other parents with more than one PANDAS child. I have this nagging feeling that I will be wasting my time and money next week on dd's eval with Dr. L.

 

Ds (17) was dx'd in May. He pretty much has every symptom of PANDAS a kid could have. He is currently non-functioning--can't attend school, can't learn to drive, can't work a PT job... There is always something going on with him.

 

Dr. L. thought dd (12) needed an eval based on a history of severe pediatric BP, panic disorder which keeps her out of school, insomnia, and urinary urgency issues. This came up at the end of ds's (very emotional) eval, so I didn't get a chance to really process it.

 

Now that her appt is just days away, and I'm needing to get a history together for her, I'm questioning the whole thing. If ds had never been sick, then dd's situation would seem pretty bad, but her picture pales in comparison to his. She, too, has been non-functioning at times. But, she does not have the brain trauma that ds has. She does not have tics, OCD, or loss of fine motor skills. She struggles with Math, but lots of kids do. In short, she is lacking the hallmarks of PANDAS.

 

Maybe she has straight-up BPD and panic disorder. I owe it to her to get the eval, but I have second thoughts. My question is to parents of more than one PANDAS child. Did the siblings meet all the criteria for a dx? If they did not, but were dx'd anyway, did they improve with treatment?

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My advice would be to get the eval. My kids presented sooooo differently. If it wasnt for our son being severe, our daughter would have flown under the radar for a much longer time. My son is about as textbook as it gets...my daughter - her OCD is all obsessive thought - no ritual or compulsion so it went unnoticed. It was an increase in seperation anxiety and she had wet the bed at the same time her brother had a flare that started to tip us off. (She was always tested and treated for 30 days when her brother tested positive anyway.)

 

Her last 2 run ins with strep this year were by far her worst episodes - more recognizeable symptoms but still nothing close to her brother.

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Very different presentations here too. DD has very bi-polar symptoms with rapid cycling. Her BP issues have been related to high copper, yeast and sometimes infection and the toxins from die-off. Treating MTHFR/methylation has helped a lot, as has tryptophan but having her on abx also helps. So treating PANS may not be her complete answer but it may be a part of it. I personally don't think anyone is just stuck living with BPD and a life of psych drugs. Feel free to PM me if you ever want to know the details of what we've done for DD. Dr L may not be the last doctor your DD needs to work with but I think it could be a valuable part of a treatment plan.

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If you don't want to take your dd, may my dd take her appointment? Just kidding--we have to wait until October 2. Am in the same position--dd's brother had a quite classic presentation--he was dx'ed 11 or 12 years ago at NIH, didn't make it into the study as he was deemed too chronic, and we were sort of left on our own to deal with it with a sympathetic ped who prescribed abx and loads of ERP. His symptoms came back in college, and we just saw Dr. L in June. She suggested dd be evaluated, but her presentation is quite different. She mostly has a few subtle OCD things--way too much teeth brushing, cannot stand being in a room without a fan going, etc--but mostly has great anxiety, panic attacks, and a few phobias--but with extreme reactions. When she saw a spider on the porch last summer she began hyperventilating and fell straight down unconscious. I have noticed a symptom in common, but with different reactions. DS had a huge list of words he could not hear without a severe tic reaction. DD is constantly saying to me she doesn't like the sound of particular words I say. Am trying now to notice a pattern. At 19 she's pretty dysfunctional, so I am definitely going for Dr. L

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Thank you, all. Her eval is on Tuesday. I know she needs to go. Psychiatry is only getting her so far. Thank you for reminding me to trust Dr. L.'s experience. I've been thinking a lot since last night, remembering things I'd "put away," like how dd insisted she was fat from ages 3-6 years (until we started meds.) She has more than BPD, that's for sure.

 

It's just so hard to look at all those painful years again. I think the idea of having to do that was really scaring me last night. Dd may be too afraid to go to school now, but she is SOOO much better than she was as a little girl. I'll have to talk about those years with Dr. L. and they were such sad years. But the reality is that at ANY time dd could spiral back into that, and a raging, delusional adolescent is much worse than a raging, delusional little one. If dd has PANDAS, we need to know now and start treating it.

 

Time to put on my big-girl panties. :unsure:

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