sacklesb

You've been more than helpful!! Plus, I heard back from Dr. Margo Theinemann as well!! It's looking brighter and will persue all! Stay tuned, Barb

Forgot to mention, we live in San Jose, Ca., Barb

Hi Everyone, Originally joined Latitudes in Fall 10 when my son's odd symptoms started to blow up-but was concentrating on the tic end of things as thats where the Drs led us. Well here we are 3 full years later, neurologists, psychiatrists ENT, allergists, Gastros, CBT and we're worse off than ever. Been to UCSF where Dr Lowe didn't think that Nick's most disruptive symptom of randomly gagging and retching (no nausea or vomiting, though when it gets intense and frequent-like now- hard to eat. It comes and goes for no reason)) was a tic, even though Ped and one neurologist at Packard did??? Nick had a myriad of wacky symptoms and behaviors that 4 years ago didn't exist. One Dr says one thing and the "specialists" say another. Since I had lOTS of hours of desperation hunting for clues-our family life has been crushed by this, no travel, no get-togethers (we go seperately. Odd looks when people find out that we're still dealing with this. No school since middle of 6th grade-had to homechool since. Exhausting in a nutshell. Anyway, went to visit our PEd again by myself in May. She is stumped and needed some time to search out some resources but its been too long and I think shes given up. I really think Nick is dealing with PANDAS but I'm just his mom and I could use some help. I never thought we'd be on the cusp of High School still wearing the same shoes as in 6th grade. I have begun to reach back out on this site and through tthe PANDAS network to see if someone can help us find someone willing to do more than listen to our story and make guesses. Nick deserves so much more and the world needs him, he's been hanging in like a trooper and is my hero. Thanks for being here and walking this tough walk for families like us, Barb Sackles

Nola, I was just returning to the Latitudes site to see if there have been any new responses to my inquiry when I saw yours. Not sure if you have solved your Dr. problem but we have been looking for an "expert" in the bay area as well. We are schedulled to see Dr. Thomas Lowe at UCSF. He runs a Tourettes and Tic Disorder Clinic there. Not sure what the outcome will be but thought I'd relay the info to you anyway, Barb S.

Has anyone's child had the tic displayed as retching or gagging? Son has been able to contro l these with mints or water until 2 weeks ago when they manifested into dry heaves- he's not at school as he has these all day, any help would be sooo appreciated, thanks

Thanks GAT, As I sit with Nick doing homework he's had to have 3 mints to keep from gagging. Its the weirdest thing. I just gave him a dose of Motrin as someone said to try that to see if things quiet it. So looking forward to Saturdays nuerolgy appt. for more insight. Love this network because,now that I've found it,I'm on it lots and looking elsewhere over the net for more info, Sincerly, thanks,Barb

Like everyone, I'm so sorry you, your child and your family are going through this. Like Emmalily, my son whose 16 is tripped up often with a gag reaction. Also like your son, he spits when the gag reaction is at its worst and it will often be the catalyst to a full blown panic attack. While he's better now, there was a day when he was highly sensitive to tags/seams/rough clothes/heavy blankets or coats. Just writing to tell you that bad as it is, you aren't alone and there are people here who will understand to the point of giving you understanding of his condition.

Hello- I am new to this forum as of last week and was browsing when I came across your post. I am from San Jose and have just found out from our Ped that my son has a probable case of PANDAS/PITANDS, I am wondering if you found help, as I see your post is older, and how things are. I am still wary as we meet with PANDA friendly nuerologist Sat. Has your daughter recovered? Barb Sackles

Hello Everyone of you who have kindly sent your support! Good news, we went back to the Ped today and she strongly suspects a PANDAS or PITANDS- she even got the PANDA-friendly Neurologist appt moved up to Sat.! I have not felt this relieved in 12 days! Emalily, I was SOOOO glad to hear your concurrence of symptoms-cuz they are weird- but the Ped. says its a nueromuscular reaction- no nausea, just spasming-GROSS feeling for sure- and Nick can't wait to kiss them goodbye as they're what's keeping him from school for the most part. We did the 2 blood tests that are recommended as well. She mentioned treatment with SSRI's might be a possibility. From my limited look-see, that doesn't look common, any suggestions? Of course we'll see what the neurologist says Sat. Maybe I can sleep tonight, even if Nick is bed hopping, we found him behind the couch this morning- sad and funny at the same time, much love, Barb Sackles

Thank you so much- I stumbled on to this forum after spending the last week pouring myself in the web for answers to my son's unstoppable gag refelex- roadblock after roadblock. I hope to find a faster route to testing for PANDAS and get the ball rolling in that direction as all others seem like dead ends and I just can't wait a month more. Its taking all I have to get through, much thanks,Barb

My son is 11 yrs old and for the last few years he has been dealing with a gag reflex that comes and goes throughtout the day not connected to anything we can notice, he managed with sips of water and mints but things got worse last week. He seemed to have lost control of managing them and had to leave school a cold overlapped and the gag feeling manifested into dry heaves. The cold has subsided amd dry heaving has stopped but his gag reflex has made our lives upside dowm. I'm bawling as I write. He's such a strong guy,I'm worse off than him. The ped thought PANDAS and I never heard of it so rather than wait a month for the neurology appt I set out to see if we had an ENT problem-sinus CT neg, throat fine. Off for a 2nd opinion, dr, thinks GERD so we have him onNasonex and will begin prevacid today thoough he has no other symptoms of GERD. School isn't going well as he can't managge the gags all day. He does have wieridites like being very sensitive to rough clothing, smells, pick eater. This past year he picked up a weird habit of spitting when he heard someone else burp. He has a fit now and then over homework or if thigs aren't the way he thinks they should be. I just changed his bed and I didn't put the right sheet.blanket comboon and he freaked. We've just chocked it a;; up to "its just Nick" until this week when my little guy just bowed out of life as we knew it. I am heartbroken and don't know what to do. We're in San Jose Ca, please, any adice, I can't cry anymore,Barb sackles I am also not computer saavy and I'mnot sure i can follow this thread feel free to email me sacklesb@yahoo.com