I need help/advise from moms who have had children with PANDAS (OCD caused by strep).

Shari - posted on 04/05/2014 ( 6 moms have responded )

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My 10 1/2 year old son started having tics about a year ago and now has developed several ocd symptoms over the last few months. He has had strep several times over the years and had it back in September, but was never treated with antibiotics for it. I am on a mission right now to get answers and to get my "old" son back. He is no longer the boy I use to know. What were your experiences and where should I start? He has an appointment on Monday with the Dr.

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Erin - posted on 04/06/2014

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The ocd in PANDAS is a function of their lack of immunity or damaged/messed up immune system and it needs to be addressed as an immune issue -- i say this because it really pains me to see sick kids brought to cognitive therapy when they are sick and sad and angry and hurting from the pandas. Get to a real PANDAS doctor or a MAPS doctor (formerly known as a DAN Doctor.) Where do you live? Also very strongly advise you seek advice on some of the forums such as ACN Latitudes forum (awesome) or some of the private FB groups. The yahoo groups are pretty weak right now.

Gloria - posted on 04/05/2014

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Definitely seek input from a dr experienced in PANDAS. Unfortunately not all docs are on board with the PANDAS hypothesis yet, so if your dr is not responsive, find another one. Pandasnetwork dot org has excellent resources and a list of experienced physicians--most, but not all, neurologists. Most PANDAS-literate docs will start with bloodwork to test for strep titers, as well as other infections and immune deficiencies. There is also a new book out called Childhood Interrupted which is a PANDAS/ PANS guide for parents. The sooner you address the issues, the better.....but also, recognize it may be a long road back. Sometimes you see improvements right away, but sometimes it takes time...that doesn't mean you aren't on the right track, though, so don't be discouraged. Good luck to you and your son.

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Ana - posted on 03/10/2016

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How are your children doing now? My son (9) has just been diagnosed with PANDAS. After 2 antibiotic treatments, he's doing somewhat better, but is still showing OCD and gets frustrated and cries easily. it kills me to see him like this.

Gloria - posted on 04/06/2014

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Sending good wishes your way. If you don't get a response from the neurologist you are scheduled to see, please do seek out another doctor and trust your instincts. The Latitudes forum and Pandas network both can point you in the direction of a doctor who will "hear" you.

Shari - posted on 04/06/2014

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Thank you both for responding. I have a document I typed up with all my sons recent behaviors that I am taking with me to his apt tomorrow. I will be asking for blood work as well. I live in the Raleigh, NC area and my neighbor is going to try to get an apt for my son with a pediatric behavioral neurologist that she works with and highly recommends. I'm very nervous that I wont be heard and that they will immediately write this off as ocd because my husband has ocd. What is interesting is that my husband had strep a lot as a child and eventually had his tonsils removed. Makes me wonder if his ocd was brought on by an infection. I guess we will never know, but I will find out for my son. I just read Saving Sammy the boy who caught OCD. My son is exhibiting so many of the same behaviors that the boy in the book had. Thanks again!

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