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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

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Hi Barb... I will email you too!

 

Please contact a member known here as "keeptrying"... she is in your area! I will try to email your contact info to her vice versa. She has found a PANDAS doc in Bay Area, but...

 

There is a physician I just learned about by a mom who lives in my town who has a son with PANDAS. Not right in San Jose, but there is the Valley Children's Hospital in Madera and the doc is Dowain Wright, MD, PhD. I hear he is fantastic! He is treating PANDAS with novel approaches (for extreme cases).

 

Your child's symptoms do sound like PANDAS to me.

 

 

 

 

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Hi Barb... I will email you too!

 

Please contact a member known here as "keeptrying"... she is in your area! I will try to email your contact info to her vice versa. She has found a PANDAS doc in Bay Area, but...

 

There is a physician I just learned about by a mom who lives in my town who has a son with PANDAS. Not right in San Jose, but there is the Valley Children's Hospital in Madera and the doc is Dowain Wright, MD, PhD. I hear he is fantastic! He is treating PANDAS with novel approaches (for extreme cases).

 

Your child's symptoms do sound like PANDAS to me.

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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

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Barb - welcome to the forum. You've "stumbled" into the best place possible for you and your son. I am sure the emails you are receiving will give you very good advice. I just wanted to say welcome - we understand. There is lots of good information on this forum, and we all learn something new everyday.

 

Best wishes to you and your son.

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Hi Barb,

 

Has your son had a recent throat culture? I would rec. culturing all family members.

 

Here is a list of FAQ's. http://www.latitudes.org/forums/index.php?showtopic=6266

 

I would also rec. getting the Cunningham test done.

 

Will your ped get you a script for a month of full-strength antibiotics? (Like Azith. 500mg/day) How much does your son weigh?

 

Have you tried advil? does that help at all.

 

 

 

here are some N. Ca docs (from the helpful docs threads):

California

 

 

 

Dr. Brock Bernsten - Pediatrician, willing to listen and support whatever recommendations immunologist made including open IVIG order if required. Willing to do additional research but not very familiar with PANDAS

3838 California St.

San Francisco, CA

Phone: (415) 666-1860S

 

Frederick A. Lloyd, M.D. - Has several PANDAs patients, knows Margo Thienemann, listens well, responsive, will provide antibiotics in conjunction with other Dr. recommendation, open to IVIG prescription if recommended by another Dr.

Palo Alto Center

795 El Camino Real

Palo Alto, California 94301

Phone: (650) 853-2992

 

Margo Thienemann MD - Specializes in Forensic Psychiatry, Geriatric Psychiatry, Internal Medicine, Adolescent Psychiatry & Pediatric Psychiatry, Psychiatry.... OCD & Has well over 20 PANDAS Patients

900 Welch Road

Suite 207

Palo Alto CA 94304

Phone mail: 650 324 3241

 

Dr. Frederick Lloyd, Pediatrician - helped with diagnosis, prescribed antibiotics, did a prednisone trial, and IVIG at Lucile Packard.

Palo Alto Medical Foundation, Palo Alto

 

Hi - In San Francisco East Bay, we have seen:

Herb Schrier MD(Psychiatrist) at Childrens Hosp, Oakland. He supported antiobiotics with pediatrician. Has seen several PANDAS children. Recently has 4 more PANDAS cases. Has been very helpful and flexiblewith treatment strategies. Supports IVIG although we do not have referral yet.

 

Katherine Martinez, Psychologist, CBT/ERT. Excellent. Is on leave from practice in Oakland. Was helpful with eating issues.

 

Denice Killingsworth, OT, Walnut Creek. Wonderful with sensory integration/reintegration. Was helpful with eating issues.

 

Marianna Eraklis MD, behavioral pediatrician, in Orinda. Very supportive and knows a little about PANDAS. Just started working with her.

 

PS. I'll e-mail this as well.

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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

 

Hi,

 

First, I'm sorry you're dealing with so much!

Second, I am 19 and have PANDAS that is currently under control with antibiotics. Two things leaped out about what you said about your son. The Gag-reflex...in the five years I was sick before diagnosis I was constantly nauseous in my upper-throat...if that makes sense. I did not have an upset stomach (I had GI problems, but not upset stomachs) but I constantly felt in my throat like I was going to vomit. It seemed like that area was always slick with mucus from post-nasal drip and that gagging feeling went away when I started taking an uber-dose of Vitamin C with bioflavonoids and querecetin (sp?). That was several months before I found out I had PANDAS. And the other thing that leaped out at me is you say your son spits when he hears someone burp. That sounds very much like a compulsive behavior similar to one I experienced where I would often have to swallow when I heard someone burp (which has also gone away with antibiotics).

 

Hope that helps,

 

emmalily

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just want to ditto what all have said...and make sure you caught the part about...if the neuro doesn't know about, believe in, or understand pandas..(as it sounds to me like that is the case) you will spend way too much time going down the wrong path....i suggest you see a panda experienced doc...as in i have a panda friendly pediatricain but is not able to really treat the condition,..gets it, believes it ...but doesn't have a grasp on the ins and outs and resistant to long term abx...which may be needed ,,i see other docs for that

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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

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She mentioned treatment with SSRI's might be a possibility. From my limited look-see, that doesn't look common, any suggestions?

 

1 mo. trial of Azith. 500mg/day (plus some advil). :)

 

An SSRI for gagging/neuro. musc. reaction? Eeek. That reminds me of the doc who tried to put Lauren Johnson on Risperdal for her sneezing (tic) to "see what would happen". :wacko:

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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

 

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.

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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

 

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.

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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

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