Today Show Saving Sammy PANDAS

PANDAS can present with severe and debilitating symptoms as in Sammy's case, or it can be more subtle and easily misdiagnosed, especially since most doctors are unfamiliar with the disorder. Tics, OCD tendencies, rigid/inflexible thinking, behavioral changes, anxiety, from mild to severe could be caused by an autoimmune reaction to strep antibodies.

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[sitali301]

I put this video here because it's important to get the word out about PANDAS. There are different treatment options and it's important to note that no two PANDAS kids respond the same way to the same treatments. Symptoms can be sudden and severe or can develop over time and be more subtle. There are some great people out there researching and treating, but the medical community needs to get onboard. This is not a "really new" disorder and it needs attention and recognition. Kids are suffering.

[1shopqueen1]

On 7/ 4/08 my son started showing OCD behaviors. In Aug. his anxiety was so bad that he could not go to school and was taken to the ER. He started seeing a Psychiatrist and a counselor. Recently he started having vocal and facial tics. I presented the idea that my son might be suffering from PANDAS and my doctor but him on a 10 day Amoxicillin trial. I am really concerned that hisOCD and tics appear worse then they were. How long does it take to show any signs of improvement?

[sitali301]

Some children show improvements quickly once on antibiotics, but some need more time and often a stronger antibiotic if results aren't seen with amox. You might consider trying a at least a month of antibiotics to see if there is improvement. If the amox doesn't work try something stronger like azithromycin or Augmentin. There are a few reasons why these may work better than amox. Personally I don't think 10 days is nearly long enough. I'm not an dr, though, just a mom of a PANDAS kid!

[1shopqueen1]

Thank you so much for responding. We tried 10 days of Amox. and his tics and compulsions got worse then they have been in months. I read Saving Sammy this week end and now I know what course I need to take for my son. It is reassuring to know there are people out there that understand all that goes along with this diagnosis. If you don't mind me asking; are/were your child's behaviors as severe as Ms. Maloney's son? My son has some severe behaviors, but not to the extream as Sammy.

[sitali301]

No, my son's symptoms are not nearly as severe. He has tics, extreme irritability at times, emotional lability, and a little OCD in his thinking, but no real overt OCD. There is a pretty wide spectrum of symptoms and symptom severity with PANDAS.

Even on antibiotics, there can be setbacks and other illnesses and/or stress can compromise the blood brain barrier causing a flare up of symptoms.

[wendyroess]

If you would like to find additional information on PANDAS please go to Pandas Network

[mrlaa1]

"For one year" she says empathically. I have been suffering with this since I was a kid and I am 20 now. Unfortunately I cannot find a doctor and I don't have a "Pandas Parent" to help me any more. If anyone can reccomend a doctor in the uk, please please contact me.

[griffin5fam]

Thank you! With your help I think we are on our way to helping my son. Thank you for raising awareness. God Bless you Sammy and your mom.

[rmadrid10figo]

Well this might just save my life.

[nocturnallyinsane]

I'd rather have PANDAS than have gastroparesis. :/

[thePANDASgirl13]

pandas is a totally awful disorder. I'm trying to raise awareness.

[Mrdjc9]

@sitali301 i had pandas it was terrible i didnt have the tics or the terets

[whitewolf037]

@1shopqueen1 he might be a carrier like me and so he can get it more often like me i have it right now im 8

[whitewolf037]

@sitali301 thank you so much i have pandas and no one knows what it is i crd when i saw this

[V2Blast]

@magiczaps :D Sleep deprivation does that to you. Well, to Sammy. I guess the rest of us either fell asleep like normal people or stayed up through the night like crazy people.

[V2Blast]

@magiczaps Not really. Though there is one interesting story about him (which is true): during a 24-hour play festival, he once went home to take a break, and fell asleep standing in the shower for 2 hours. We shall never let him live it down.