Difficulty swallowing

[Tenacity]

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.

 

Virtually any single symptom might have any number of underlying causes, and the other folks who've responded to you have cited several possible causes of swallowing difficulties. I would not venture to suggest just what might underly your child's particular swallowing problems. But since pronounced swallowing problems have been a part of my own child's illness, I thought I'd throw my observations into the mix.

 

After several years coping with what we were told was bipolar disorder, our son received a diagnosis of PANDAS after receiving an ordinary flu shot in September and being stricken shortly thereafter with a severe movement disorder. He suffered violent movement attacks -- which may or may not have been partial seizures -- during and after which he would suffer 2-3 hours of mouth and throat dysfunction: inability to move his mouth, speak, or swallow, and consequent drooling. He also suffered random intermittent periods of mouth/throat dysfunction, when he could not swallow at all or could swallow only with obvious straining and discomfort, or when he could not eat or could only handle soft foods. Sometimes he even manipulated his cheeks with his fingertips, as if he were trying manually to get his mouth to work.

 

While I understand from my reading (including Dr. K's website) that swallowing problems in PANDAS kids are sometimes OCD symptoms, I understand also that they may sometimes constitute a type of movement disorder (I think this is what Fixit was driving at). Also, autoimmune disease in PANDAS kids may sometimes harm other parts of the brain besides the basal ganglia... which might account for certain odd symptoms.

 

Of course, whatever the cause behind the symptom, I wish your child speedy recovery!

 

Tenacity

[Stephanie2]

I have a couple experiences with this. First, when I was in college I had a choking episode where I kept choking on saliva or just my own throat! When I went to the ER they said it was called "globus palidus", a form of anxiety (I guess like a panic attack). So maybe in your daughter's case it is related to anxiety.

 

Also, both of my boys have PANDAS, but my 2 year old also has Chiari Malformation which makes it hard for him to swallow sometimes. We are fortunate, as some kids with Chiari end up needing a feeding tube and then surgery. Chiari is very rare, so I am guessing it has more to do with anxiety. Does it go away with ibuprofen?

 

Best of luck!

Stephanie

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.

[T_Mom]

Worriedmommy--You have said she was getting better on the antibiotics...correct?

 

I will tell you (thank you again EAMom!) some of the best advice we ever got was the suggestion to try a month of full-on antibiotics...This made such a difference for our d that we continued week to week--and week to week we saw small, but steady improvements, in the right direction.

 

I was OK with this as long as there was a "general trend" in the right direction!

 

After about 12 weeks of full antibiotics she began to plateau at about 85% herself...

At that point we added a steroid burst, while continuing the antibiotics.

The steroid burst was like jet-fuel to her "healing"...She made rapid and pronounced progress, noticeable to her teacher, etc. (she had been very severe originally with obvious OCD.)

 

In our experience the antibiotics have been really key. Our d has been on full strength antibiotics for 16 months now. The past 4+ months she has had no symptoms. All the best to you--

Edited April 7, 2010 by T.Mom

[worriedmommy]

Worriedmommy--You have said she was getting better on the antibiotics...correct?

 

I will tell you (thank you again EAMom!) some of the best advice we ever got was the suggestion to try a month of full-on antibiotics...This made such a difference for our d that we continued week to week--and week to week we saw small, but steady improvements, in the right direction.

 

I was OK with this as long as there was a "general trend" in the right direction!

 

After about 12 weeks of full antibiotics she began to plateau at about 85% herself...

At that point we added a steroid burst, while continuing the antibiotics.

The steroid burst was like jet-fuel to her "healing"...She made rapid and pronounced progress, noticeable to her teacher, etc. (she had been very severe originally with obvious OCD.)

 

In our experience the antibiotics have been really key. Our d has been on full strength antibiotics for 16 months now. The past 4+ months she has had no symptoms. All the best to you--

 

Yes, my dd did show pretty substancial improvement on Biaxin...especially after day 14. Unfortunately, it was only a 20 day course, and we've seen many tics and behaviors creep back in the past week and a half since the course ended. Dr T didn't want to keep her on Biaxin long term b/c it's so powerful. (She was also getting daily headaches while taking it.) He did mention possibly putting her on a longer course of lower dose azith with a steroid burst. So, maybe I'll push for that.

 

Her worst symptoms are tics. At her worst she was having over 10000 a day, and they were very noticable. Anxiety and subtle OCD issues were there too, but much more easily overlooked than the tics. The tics are less violent in nature now, but since ending the Biaxin they've crept back to occurring every 3-5 seconds all day long while she's awake. I'm nervous b/c we were just at a GI doctor on Friday, and he said that her heart beat changed every time she ticced. He called it an irregular heartbeat. She's never had an irregular heartbeat before all of this started. The GI doc didn't seem too concerned, but I'm not sure he understands that she is litterally ticcing every few seconds. I'm definitely concerned, and want to know if this is putting undue stress on her heart.