Difficulty swallowing

[worriedmommy]

Just wondering if any of your PANDAS kids have difficulty swallowing. Since dd's sudden onset of what we think in PANDAS she's had numerous episodes where she simply cannot swallow. This usually happens during a meal, but has happened just with saliva. I know that some kids have a fear of choking, but this is not the case with my daughter. She just keeps having episodes of choking. She was on a 20 day course of Biaxin last month, during which she didn't have any choking episodes, and her multiple motor tics, and behavioral issues improved greatly. She's been off of the Biaxin about 10 days now and some of the tics and anxitety issues are back...and so is the choking.

 

I plan on calling her pediatrician tomorrow b/c I'm afraid that one of these times she's not going to be able to get the bite up and be able to spit it out. Any experience anyone has with this would be greatly appreciated.

[JAG10]

Hi,

 

Sounds scary. I don't have PANDAS swallowing experience per se, but dysphagia experience as an SLP.

 

Are you noticing differences depending on what is being swallowed? In general, water is one of the most difficult substances to swallow bcs it is so thin. moves quickly, pools in cavities easily and "goes down the wrong pipe" if all the structures involved are not working in sync with each other. Thicker liquids would be easier.

 

As far as food goes, we chew up food, mix it up with our saliva to form a bolus and our tongue pushes it backward so we can swallow it. Dry, crumbly foods that are not chewed well or swallowed to quickly can be problematic like rice or pretzels.

 

Can you give some examples of foods or liquids you've observed her having difficulty with?

 

I will say this... sometimes swallowing can get in your head. I have several SLP friends who know too well the process of swallowing and end up aspirating bcs they are thinking too much about what is usually an automatic process. Plus, they talk too much when eating!

[Fixit]

not to scare you more...but from what i understand the larinex is just another muscle...it might be tic

Like when my son want to nod yes ....it sets off the nod tic so a simple yes becomes more

But what jag said is true too.

 

I would greatly suggest getting back on the abx if it was working so well and stay on it....Go to doc t's sight and even there in the papers, the patients were on abx;s for months...

 

 

Just wondering if any of your PANDAS kids have difficulty swallowing. Since dd's sudden onset of what we think in PANDAS she's had numerous episodes where she simply cannot swallow. This usually happens during a meal, but has happened just with saliva. I know that some kids have a fear of choking, but this is not the case with my daughter. She just keeps having episodes of choking. She was on a 20 day course of Biaxin last month, during which she didn't have any choking episodes, and her multiple motor tics, and behavioral issues improved greatly. She's been off of the Biaxin about 10 days now and some of the tics and anxitety issues are back...and so is the choking.

 

I plan on calling her pediatrician tomorrow b/c I'm afraid that one of these times she's not going to be able to get the bite up and be able to spit it out. Any experience anyone has with this would be greatly appreciated.

[worriedmommy]

She doesn't seem to have any difficulty swallowing liquids. Actually, when she has had trouble with swallowing food, I've told her to sip her water or milk, and that has seemed to be easy for her and actually got rid of the feeling in her throat so she's been able to resume eating.

 

I can't seem to find a pattern to what brings on this feeling for her. This past Saturday she started lunch with a banana, which she ate without any problem. Right after that she had an english muffin with butter, and that's when the hard swallowing started. (By "hard swallowing" I mean that it looks difficult for her to swallow...like someone with a really sore throat that has to do an exaggeratted swallow to get the food down.) The swallowing got so difficult she was chewing and then spitting the bites out. Finally, she decided she couldn't eat the english muffin, so I got her a yogurt which she was able to eat without any problems.

 

The same thing happened last night with dinner. We had hamburgers, which is one of her favorite meals. After a few bites, the hard swallowing started...followed by the food spitting. She couldn't finish the hamburger, so she had a yogurt and a glass of milk.

 

There are also some meals, like breakfast today, where she has no trouble at all. This morning, she had dry Raisin Bran cereal. She had a glass of water on the side, but each bite of cereal was completely dry...so one would think that would be tough to swallow. But it wasn't.

 

Jag - what is SLP?

[dcmom]

Worriedmommy-

 

I know others will chime in soon...

 

PANDAS causes eating difficulties for many kids.

 

For my dd, it was the fear of vomiting. She couldn't eat dinner, and at her worst, stopped eating lunch as well. It was/is ocd. She is much better now, although will occasionally stop eating before she is done. Dr K talks about this on his site. He sees many kids who don't eat because of a fear of choking (ocd). Possibly your daughter is not really choking, but is afraid she will. Other parents have talked about issues with not swallowing saliva, as well.

 

I found, my dd did best while eating in front of the tv. I would put a movie in for her, and fix a tray of a bunch of different things. Over the longer, and distracted time span of a movie, she would eat most of the food. I would try this- but don't tell her that is what you are doing- just rent a movie and put in just before dinner time. I fed my dd lunch and dinner in front of the tv in the family room for at least a month. We have never allowed eating a meal in front of the tv before, but desperate times.... Now that she is eating normally for the most part- we are back to eating at the table as a family.

 

Good luck- the not eating is really scary, totally freaked my dh out!

[JAG10]

SLP is speech-language pathologist; we are also trained and practice dysphagia (swallowing dysfunction) therapy as the mechanisms involved are similar to speech.

 

When there is difficulty with the coordination/function of the swallowing mechanism, you can see overt or covert signs of aspiration. Aspiration is when something, like food/liquids, gets in the lungs and can result in pnuemonia. An overt sign this is happening would be coughing; your vocal cords are trying to expell what doesn't belong there and this is a healthy response. Some people don't have this response and a bad swallow and get really sick.

 

So, when she is spitting the food out, is she coughing or more like vomiting? Coughing would seem to indicate the food is going down the wrong pipe (trachea); vomiting would be more like it was in the right pipe, but there was difficulty moving through that pipe-which sounds more like what you are describing. That is why the softer bolus, alternating liquids and solids is helping; it takes some of the load off of the chewing phase.

 

And then you get back to the OCD question... is she anticipating difficulties with foods that she perceives as difficult to chew and then triggering a gag reflex, ect.

 

AmySLP is also an SLP and she probably works with swallowing on a more regular basis that I do. You could also try PMing her to ask her opinion.

[momaine]

My dd has swallowing issues. It appears to be an OCD issuse. When she is having trouble she needs me to watch her swallow (whether saliva or food) so that I can tell her that she did it normally. she'll make a loud groaning sound so that I will LOOK at her then she can swallow. But if I don't look she can't even swallow her saliva at times. This came on since starting antibiotics, but her OCD morphs a lot so that is not unusual for her to develop a new issue. Overall, things are better with the combination of prednisone bursts and antibiotics but still a LONG way to go.

 

So frustrating!

Angela

[momaine]

This is exactly what it looks like with my dd who has ocd issues with swallowing and who i wrote about one post above.

Angela

 

...like someone with a really sore throat that has to do an exaggeratted swallow to get the food down.) The swallowing got so difficult she was chewing and then spitting the bites out. Finally, she decided she couldn't eat the english muffin, so I got her a yogurt which she was able to eat without any problems.

 

The same thing happened last night with dinner. We had hamburgers, which is one of her favorite meals. After a few bites, the hard swallowing started...followed by the food spitting. She couldn't finish the hamburger, so she had a yogurt and a glass of milk.

[worriedmommy]

She is not coughing at all. It's like she starts to swallow the food, but can't get it past the back of her throat. So her gag reflex moves the food back into her mouth and she then spits it out.

 

I asked her what it feels like, and in her words she said it feels like there is something in her throat pushing the food up when she tries to swallow it.

 

So, when she is spitting the food out, is she coughing or more like vomiting? Coughing would seem to indicate the food is going down the wrong pipe (trachea); vomiting would be more like it was in the right pipe, but there was difficulty moving through that pipe-which sounds more like what you are describing. That is why the softer bolus, alternating liquids and solids is helping; it takes some of the load off of the chewing phase.

 

And then you get back to the OCD question... is she anticipating difficulties with foods that she perceives as difficult to chew and then triggering a gag reflex, ect.

[thereishope]

Has she seen an ENT?

 

When I look at problems, I try to look at them from different angles. Maybe there's swelling in her throat, swollen glands, or she's overthinking it now and concentrating so hard when she eat that she is making herself gag. If it's just the 2 of you in a room and you cut something soft up really small w/a glass of liquid following, can she do it? If so, practice with her and maybe you can reteach her to eat with confidence again. Try having something distracting on like a tv and stroke her back while she tries it. Ensure her she cannot choke on that small piece of food. Maybe a small piece of yolk from an egg?

 

Does the problem get better when Ibuprofen is in her system?

Edited April 5, 2010 by Vickie

[worriedmommy]

She's actually on a daily course of Motrin per instruction from Dr. T. We're trying this out for a week...just started Friday. So, it's still happening even with Motrin.

 

She's been to an ENT and a gastro doctor. She's also supposed to be getting an endoscopy later this month (waiting for a date from the doctor). So, hopefully that will uncover any possible issue related to this.

 

What I find interesting is that she often had to spit food out as a toddler. Not all the time, but at least 4-5 times a week she'd gag on food and have to spit it out. This happened until she was 4 and had her tonsils removed. After that the gagging & spitting stopped (along with a handful of other behavioral issues). We were told that removing her tonsils allowed more passage in her throat, which was the reason her gagging stopped, and her behavioral improvement was likely a result of better sleep post tonsillectomy.

 

She's now almost 6 and these symptoms have just returned in the past 2 months...along with the onset of multiple motor tics.

 

Dr T had her on a 20 day course of Biaxin, and she didn't have any gagging issues during that time. She's been off Biaxin about 10 days now, and the gagging (and some tics) are back.

[T_Mom]

Do you know why Dr T didn't have her on a longer course of antibiotics?

 

I agree with DCMom as she noted anorexia-issues can be associated with Pandas (that was our d's first round of Pandas symptoms--3 months with the eating disorders clinic two years ago!!)

 

Dr. K on his website referred to Pandas anorexia as related to the sensation of choking on food--Our d never had that type of sensation, but instead had full blown anorexia that started a specific week which I can identify.

 

I too would be very concerned about this--I will hope this sensation leaves once she is back on antibiotics.

[worriedmommy]

I'm not sure why Dr. T only perscribed a 20 day course. We're still very new to all of this. After ending the Biaxin, and seeing some tics & behaviors creep back we had a follow up phone consult with him. He now has her on a week long course of just Motrin to see if it has any effect. (She's on day 5 right now, and the Motrin does not seem to be helping at all.) I'm supposed to follow up with him at the end of the week, and he had said that if there was no change with Motrin, then we'd likely move onto azith and or a steroid burst.

 

I really don't know what the right thing to do is. Her tics & behaviors are much better since takin the Biaxin than they were prior to it. I'd say she's at about 85% right now...and so much better off than many of the other kids I've read about on this post. She can go to school and function well. Perhaps her age (turning 6 this month) helps as her friends seem to not notice her tics (that are so obvious to me). This being said, I'm not going to be satisfied until she is 100% better. I want NO tics, and for her fears and anxiety to be under control. I just don't know what will get us there. IVIg scares me, but she does have low total IgG & low IgG subclasses 1 & 4. Couple that with a history of chronic sinus, throat, ear infections, asthma, allergies, rashes, etc....perhaps something like IVIg would be really good for her. I just don't know!!

 

Do you know why Dr T didn't have her on a longer course of antibiotics?

 

I agree with DCMom as she noted anorexia-issues can be associated with Pandas (that was our d's first round of Pandas symptoms--3 months with the eating disorders clinic two years ago!!)

 

Dr. K on his website referred to Pandas anorexia as related to the sensation of choking on food--Our d never had that type of sensation, but instead had full blown anorexia that started a specific week which I can identify.

 

I too would be very concerned about this--I will hope this sensation leaves once she is back on antibiotics.

[kcdc3]

My dd who is also on the Biaxin complained of feeling like something was in her throat - almost like a lump. Does your daughter ever say that?

[worriedmommy]

She didn't call it a lump, but has said it felt like something was stuck in there. Main difference from your dd is that my dd had no complaints while on Biaxin...only before and after the course of Biaxin.

 

My dd who is also on the Biaxin complained of feeling like something was in her throat - almost like a lump. Does your daughter ever say that?