Help Needed ! Is this PANDAS ?

[acdrobert]

Hello everyone. It has been a while since I have posted. My ds9 Thomas has fairy settled into a post IVIG life of mild humming sounds and vocal tics that are his main Pandas symptoms.

 

But now my friend and her son have some interesting issues. This boy (9) had a bad case of pneumonia in November. This child eventually recovered from the respiratory illness. Despite multiple tests, no one could say what the offending organism was. He has not had a strep blood test but throat swab was negative. A short time afterwards he son developed a constant gagging movement which means that he can't keep anything in his stomach at all. He has lost a lot of weight and now has a tube from his nose to his small intestine that a constant feeding goes through.He has the diagnosis of Gastroparesis from a Gastroenterologist. Still this constant gagging/barking sound continues I remember thinking "wow I wonder if this is some sort of tic" Now I am thinking it might be ! He has some other jerks, throat clearing sounds, and rapid eye movements that are definitely tics. He now has had some manic episodes along with a decrease in fine motor control that controls his handwriting.

 

Has anyone had this sort of intial presentation ? Gastroparesis has some neuro components to it. Do you think I should advise this family to be thinking PANDAS and try to see and expert or at least get a smaple drawn for Dr. Cunningham's study.

 

Anyone had these type of symptoms ?

 

Please let me know ! Many Thanks ! Anne

[thereishope]

First off, please tell your friend that my heart goes out to her. When my son stopped eating and started losing weight (for him it didn't stem from a gagging issue like your friend's), I remember being so scared and just wondering how can he fight this and get better without nourishment. I even went as far as to explain to him what a feeding tube was and how he needed to eat or it might eventually get to that. Even explaining that to him didn't help. I also saw my youngest son with a feeding tube in him when he was born and my mother had a feeding tube. It's hard to see a loved one going through that.

 

So...I would run bloodwork for strep and Mycoplasma (both can be the culprit for pneumonia). Is he on antibiotics right now? If he is not, I suggest that she have a talk with the doctor and ask them to start him on Zithromax until they get blood results. I say Zith because that can get to strep and possibly Myco. If they say no, she needs to tell them to take a look at her son and expain how the state he is in is acceptable when the chance at a normal life is a possibility with a trial of antibiotics.

Edited April 4, 2010 by Vickie

[EAMom]

Here's a link to an article on inflammatory conditions causing gastroparesis (lyme, vaccines...). Sorry, it's not the full text, but you can look at the first page and get the gist of it...so it makes sense that any inflammatory conditions (mycoplasma, strep, or another infection) could cause gastroparesis (and also pandas symptoms).

 

http://www.springerlink.com/content/q59068h56t765001/

 

Interestingly, I know someone (an adult) who has gastroperesis...she wonders if she has lyme. She also has some neuropathy.

 

I don't know if testing for lyme would make sense...that doesn't seem to fit in with the pneumonia history.

 

I like Vickie's idea of a trial of Azith. is good one.

 

I do think the behaviors could be tics.

Edited April 4, 2010 by EAMom

[kim]

Anne,

 

My 17 year old son was diagnosed with mild gastroperesis this year after a respiratory illness too (right around same time). His presentation was more of intense crampy, painful gassey feeling shortly after waking. It might go on for 4 or 5 hours and then disappear. In the mornings, I would be SCARED TO DEATH and by early evening he seemed the picture of health. He had 4 or 5 periods of waking up from deep sleep vomiting. It seems to be slowly getting better. The gastro's words were, "I think he had a virus that affected the nerves in his stomach. He's young, I think he'll recover just fine." This was after the "down the throat scope," (he has had other tests as well). She poked her head in the room where I was waiting, dropped that little bomb and left. In one way I was shocked, in another, not surprised at all.

 

Does your friends son have any time of the day that is better/worse?

 

I will PRAY this little guy heals quickly and yes, I sure think it's worth while for your friend to investigate the autoimmune aspects of this illness for her son.

 

EAmom,

 

Thank you for that article.

Edited April 5, 2010 by kim