Looking for any Guidance...

[SAR2011]

I apologize in advance because I know there are several similar posts. I know this because I’ve been reading the forums for a while now but I am desperately seeking guidance at this point.

Prior to Labor Day of this year, our four year-old son was an extremely verbal, high-functioning 4-year-old boy with normal physical, psychological, and academic development. Then, seemingly out of nowhere, he started having terrible nightmares that eventually evolved into daytime hallucinations. He also experienced a significant regression in speech. We noticed a severe deterioration in his sleep patterns and additional changes in his behaviors and personality. He developed an ever-changing pattern of nervous tics and his regression got to the point where our son was (is) almost entirely non-verbal and is consumed by anxiety that has significantly impeded his well-being. We have to drive him around in the car at night, often for hours at a time, in an effort to calm him enough to go to sleep. I should’ve mentioned that he had strep throat in mid-August, which was treated with 10 days of amoxicillin.

Although we live in northern New Jersey, we brought him to CHOP in October because of their infallible reputation for pediatric neurology. Our son has since been hospitalized at CHOP for three different stays, during which he has given more than forty different blood panels, sat through three EEGs, two MRIs, a lumbar puncture, one abdominal ultrasound, and one throat Doppler. Unfortunately, none of these tests and procedures resulted in a diagnosis for what is suddenly ailing our boy. Each attempt to determine if there is an organic, metabolic, or genetic issue has failed to produce conclusive results.

In reading all of the symptoms of PANDAS/PANS, it certainly seems like this is what is plaguing our son. However, none of the extensive blood work that was done at CHOP has resulted in markers that typically indicate PANDAS/PANS. I know that this doesn’t eliminate the possibility and from what I’ve read on here, it sounds like CHOP doesn’t exactly embrace the PANDAS diagnosis.

My wife is in her third trimester with our fourth child and we are at wit’s end in trying to determine what our next step should be to help treat our son. We met with Dr. Elias at Dupont in mid-December but were kind of left in limbo there. We are scheduled to go back in early February (her first available) but, as many of you know, six weeks is an eternity at this point. We feel like we are on an island and have no clue where to turn to help get him better. I’ve researched several doctors in the NY/NY/CT area (Dr T, Dr B, etc) but it seems as if every positive review is followed by a scathing one.

I’m sorry for writing a novel but we are desperately in need of help. We want to help get our child the proper diagnosis, which we believe to be PANS, and get him treated aggressively and quickly.

Thanks for listening.

Edited December 31, 2016 by SAR2011

[MomWithOCDSon]

SAR2011 -- I've sent you a PM.

[midwestmama]

I would say please do try to get to one of the other PANDAS doctors if you can get in before your follow up with Dr. Elias. She also has an excellent reputation but it sounds as though your son needs treatment asap and if someone can see you sooner, that seems like a good course of action. From what you are describing, it certainly sounds as though an eval by a PANS specialist is appropriate, and you probably know from your research that kids can have PANDAS/PANS without any positive blood markers at all--of my kids, only one had high strep titers and nobody had abnormal iG counts in either direction. It's a clinical dx, which is one reason it's important to see an experienced doctor You cannot exclude PANDAS based just on labwork or tests. You may find many of us on this forum have seen several different physicians over the course of our kids' illness, either for second opinions, confirmation, help with related problems (my kids ended up seeing cardiologist and immunologist to rule out other complications/ conditions), so don't feel as though you are doing something wrong if you seek out another physician while waiting for your follow up. Good luck and hang in there.

[JSL25]

Hi, we are fighting a similar battle (different symptoms though) with my nearly 4yo daughter. This has been going on since September. We live in the Philly suburbs and have seen 3 doctors at CHOP, none of which want to discuss PANDAS. One of the neuros was willing to give us a 30 day prescription for augmentin and it drastically improved the symptoms. Like nearly back to normal. There's no doubt in my mind the antibiotic helped. Now we're five days out of the antibiotics and the symptoms are flooding back. It's a nightmare. The neuro said she doesn't know what to do next and has recommended we see a movement disorder specialist at Johns Hopkins - Dr. Harvey Singer. I've read about him on this board and I'm not sure he's going to really help us. I don't know where else to turn. I can't find anyone that will treat her or help us. SAR2011 - I'll keep watching this post and will share any doctor names that I think are helpful if we find any. Will you do the same? Sounds like we may be in the same geographic area.

[SAR2011]

Hi, we are fighting a similar battle (different symptoms though) with my nearly 4yo daughter. This has been going on since September. We live in the Philly suburbs and have seen 3 doctors at CHOP, none of which want to discuss PANDAS. One of the neuros was willing to give us a 30 day prescription for augmentin and it drastically improved the symptoms. Like nearly back to normal. There's no doubt in my mind the antibiotic helped. Now we're five days out of the antibiotics and the symptoms are flooding back. It's a nightmare. The neuro said she doesn't know what to do next and has recommended we see a movement disorder specialist at Johns Hopkins - Dr. Harvey Singer. I've read about him on this board and I'm not sure he's going to really help us. I don't know where else to turn. I can't find anyone that will treat her or help us. SAR2011 - I'll keep watching this post and will share any doctor names that I think are helpful if we find any. Will you do the same? Sounds like we may be in the same geographic area.

 

Yes, I will definitely keep you posted and please do the same. We haven't tried antibiotics yet but hopefully that will help.

[BeeRae22]

Did you check out the pandasnetwork site for treating physicians in your area? There is a link on this board too! I would take them to a pans/pandas doctor right away,,even if you have to go to great lengths to get to one....