Choking and unable to swallow food

[socalmom]

My son is very sick. Since Dec 14 it's been ######, as you all know it can be.

 

 

His movements are severe again , never went away just waxed and waned and OCD and now choking and unable to swallow even in his sleep!!

 

He chokes on his saliva as well as food at times, he will spit it out if it gets too difficult to swallow.

 

FYI -he also has a fear, and obsession with vomiting. I am disturbed by the choking and worry it may one day REALLY choke him.

 

Anybody else that can relate to this? My gut tells me an allergy of some sort........but I really don't know.

 

He can't attend school so I don't have the fear of it happening whilst I am away from him......thank dog!

[thenmama]

Hi socalmom,

 

Sorry for your ds, and you, how awful and frightening! I do have 2 gagger-chokers and it seems the reasons for it vary a bit, but are all or almost all PANS-related. Sometimes it's clearly the OCD; they both have food-related OCD issues at times in exacerbations. It can also be caused by sensory sensitivity-- the same way the might become hypersensitive to tags, seams, sounds, etc. them when they are in a flare, it can be certain textures or something about the way the food feels. Then there's the neurological aspect and how the inflammation impacts oral motor function. My ds has dysarthria (impaired articulation-in his case due to hypotonia-- low muscle tone), and a handful of others such as: oral apraxia (the oral motor planning), dysphagia at times, etc. Also, while researching in advance of ds's upcoming tonsillectomy I read that enlarged tonsils and adenoids can cause some gagging, choking, and saliva pooling. So with my ds it could be either the PANS, his big tonsils and adenoids, or a combo of both.

 

As for allergies, my feeling is it's always worth investigating. For my kiddos these issues are clearly linked to their illnesses and exacerbations, but allergies are also immune system activators...

 

All information is good-- even if only to rule some things out.

 

Do you have a PANDAS doc you can consult or see about this?

[socalmom]

thenmama,

 

Thank you.

 

my son has huge tonsils and adnoid issues. Also I notice " streppy" smelling breath. not sure why.

 

I would love to take his tonsils out but for 2 months his movements and behavior

 

have declined so badly I am afraid it's not a good idea at this time.

 

I have found a Dr. but he's a 6 hour drive from us. I live in Los Angeles - A wasteland when it comes to PANS/PANDAS Docs.

[Tracie]

My DD has this also

It is all part of PANDAS

my dd will toss up her food

because she eats to fast or has to burp

and then she will have a hard time eating

for about a week or so

Do you have a PANDAS doc?

see if you can up the abx's

or try a different kind

have you had IVIG?

It has worked wonders for my dd

we have had to do it twice

and I would do it again if we had to.

 

Tracie

[Kiera]

When my ds is in a flare-up (like right now) sensory issues go through the roof! He goes off even his old favorites, smells bother him, had a meltdown the other day due to his sister's breath!! So taste and smell may have a lot to do with it. But the fix? Well, getting at the root cause of Pandas is the way I'm trying to tackle it, so tonsillectomy tomorrow and Dr K next month for ivig. Just sorry I didn't treat more aggressively sooner! Hope you find some answers. I'm in the SW also, and yes, severe lack of experts here, even though some local Drs are believers and willing to try and treat, at this point I'm going to cut to the chase and get expert advice.

[socalmom]

I do have a Dr. I am seeing, however just as we were going to get to ivig, my husband came down with Strep! So now I must wait for a strep free house before pursuing ivig.

 

I can totally relate to the sensory issues, my son has this w/ smell too.

 

Tracie: upping the abx is a typical protocol when in flare?

[lmi1973]

I work with someone who found out she has severe food intolerances (not allergies) who had similar symptoms. She saw an ND (I think just means naturopath) who ran a blood test to see what foods weren't being digested properly. She found out she had an intolerance to soy, eggs, and something else - something to do with limiting fruits and processed sugar. Once she modified her diet she said her debilitating symptoms went away (she had the choking thing/unable to keep stuff down). What's weird is all of this suddenly came on after giving birth and I know I've read somewhere that sometimes women can have sudden onset of ocd after childbirth. Anyway, might be worth looking into. So sorry to hear you and your son are going through this and will pray for you.