Choking--IOCDF post on PANDAS Network

[kos_mom]

Much thanks to whomever posted the IOCDF notes on Pandas Network.

 

This caught my eye--my DD19 chokes several times a week--pretty scary even as many times as I've seen her do it. Apparently this sometimes happens to her in the middle of the night. I was thinking of posting here to see if anyone else had seen this and if it could be related to PANDAS, but after some consideration decided it was a stretch.

 

And so what do I see in the IOCDF notes on things Dr. Swedo said but:

 

"•A swallowing study may be indicated in the future.

•PANS kids can have involuntary muscle movements in the throat that makes it feel like they are choking."

 

Wow! Anyone else's experience with choking would be most interesting.

 

So here's another possible way PANDAS/PANS could be health threatening. DD was hospitalized for six days in May with necrotizing pneumonia--was on really big gun IV antibiotics for 6 days. My MPH sister says her type of pneumonia has a 25% fataity rate in young people. DD's pulmonologist thinks she had aspiration pneumonia--with all her choking/gagging something (and its bacteria) went down her trachea into her lungs instead of her esophagus, leading to the pneumonia.

[PowPow]

so have they done a swallow study on her? is she otherwise a normally developed young woman?

[AmySLP]

Just wanted to chime in that a speech-language pathologist in a hospital setting would be the person to seek out if swallowing problems are suspected or to determine if a physiological problem exists. A clinical evaluation, sometimes supplemented by a modified barium swallow study/videofluoroscopy, would be done. I cannot stress enough to be sure an SLP is present. Interpretation goes much beyond if someone aspirates or not (which is often what radiology reports simply state). ENT and GI do not typically evaluate pharyngeal swallowing in this way. This is a non-invasive X-ray test, where the person eats small amounts of food and liquid that is mixed with barium. This test is typically done by SLP with radiology and can be ordered by primary care provider.

 

I hope that referral to SLP was done in aforementioned case where pulmonary indicated illness was likely related to aspiration, if it was suspected to be chronic. To clarify, there is a difference in an isolated incident of aspiration pneumonitis from aspiration of emesis and chronic aspiration and this could have been isolated, thus SLP referral not appropriate.

 

I read that note from the conference and remember it mentioning swallowing issues as a result of involuntary movements. To me this means that the involuntary movements or chorea may impede normal swallow physiology. We see this in Parkinson's And Parkinson's like diseases involving the basal ganglia. Very intriguing to me as an SLP who treats swallowing and a PANDAS mom.

Edited August 4, 2012 by AmySLP

[colleendonny]

My DD5 has not had a choking experience, but I do remember her saying on occasion that she couldn't stop swallowing. Sounds like it is related.

[kos_mom]

DD has no developmental problem that I know of. Her PCP did scrip to weeks ago for swallowing study with a private GI--I hadn't gotten around to it--too much else like ER trip when she had 103 fever, severe chills, and blue lips. PCP's theory is that cyanosis may have resulted from another aspiration episode rather than asthma attack (which she had as well). Amy SLP, in light of what you say, it looks like a good thing we didn't go the GI because a more specialized study may be called for. Am seeing ENT at hospital based practice with her Tuesday--I'll ask him and mention SLP involvement. You guys are the best!

[AmySLP]

DD has no developmental problem that I know of. Her PCP did scrip to weeks ago for swallowing study with a private GI--I hadn't gotten around to it--too much else like ER trip when she had 103 fever, severe chills, and blue lips. PCP's theory is that cyanosis may have resulted from another aspiration episode rather than asthma attack (which she had as well). Amy SLP, in light of what you say, it looks like a good thing we didn't go the GI because a more specialized study may be called for. Am seeing ENT at hospital based practice with her Tuesday--I'll ask him and mention SLP involvement. You guys are the best!

 

 

Hopefully hospital based ENT and SLP work closely...not always, not at every hospital. I would start by asking for a clinical swallowing evaluation by SLP and let she or he guide you to next step. Good luck !

[michiganpandas]

I saw this, too.....and yes...my daughter has a horrible time swallowing....but, it is mostly when she is nervous/anxiety is high. This is what also contributes to her fear of throwing up

[EmilyK]

I wonder if this sensation and issue is why my DS will stop eating saying he's convinced he will throw up? He's never described it as choking, but I am going to ask him more about it.

[thereishope]

.

Edited September 29, 2019 by Vickie

[Fixit]

I wonder if this sensation and issue is why my DS will stop eating saying he's convinced he will throw up? He's never described it as choking, but I am going to ask him more about it.

 

yes..my younger 2 have more of this.

it is not constant.

it revolves areound food texture, sensitivey..

not really worth mentioning. if it were another kid, you would just say that was the way he is.

Ds12 can down the most disgusting things i give him. he is my hero!!!!!

the younger 2 always "think" about what they are eating more. and they think themselves into gagging.

but again nothing compared to what some of you have to deal with.

[Dedee]

My daughter constantly complains that she feels like she is going to throw up. She also sometimes complains that she has a "tummy ache" too but not necessarily at the same time. It is so frustrating, because she will say she is hungry but can't eat because she feels like she is going to throw up. Maybe this is what she is trying to describe?

 

Dedee

[kos_mom]

DD also has nonspecific gastric complaints and feels nauseous a lot. A couple of times a week she does actually throw up--mostly just phlegm, but some food too. She went two weeks last month on just soft foods. She takes Zantac (others use Pepcid, apparently not too much difference) and her PCP added some anti-nausea medication which has reduced symptoms. She is an adolescent and I notice on Dr. K's site that gastric complaints and anorexia (from fear of choking or ensuing gastric pains not from distorted image) are hallmarks of adolescent onset Pandas kids he's seen.

 

The choking thing is a bit different. She'll be sitting watching TV or something not terribly active and suddenly gag and choke--she goes limp for a minute or so and doesn't see to be breathing. I grab her up and start pounding her back and she comes to--I then give her some water and she seems to be able to swallow. This may happen after she's taken a sip of something or not--but she claims to have a problem of excess saliva. This could indicate something wrong with her swallowing function rather than hypersalivation.