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My 16YO PANDAS son has been hospitalized since Tuesday because of dehydration and weight loss. He has been throwing up everything even water for 11days. This is not stomach virus throwing up. It is more as soon as it goes in it comes back involuntarily. They cannot find any physical reason after all of the testing. The only conclusion is that it is mental because of the PANDAS as he has had eating OCD's in the past. We went to DR. L last week and had immediate IVIG and changed antibiotics. Unfortunately we have not been able to speak to her since. All of his treatment has been directed by a GI doctor at our local hospital in Southeastern VA. They have inserted a NG Tube and are feeding him Pediasure. When he work up from anethesia yesterday with a feeding tube he hated it, got mad and said I will not let anything I eat or drink come back out of my mouth, has been able to keep food and water from physically coming out of his mouth by concentrating on each bite and reswallowing anything that does come up. This keeping the food-in seems more defiant than determination to get better. He wants to go home and wants NG tube out and he knows they only way is to show them he can keep food down. They are planning on sending him home tomorrow with NG feeds.


My worry is he will stop holding the food down and return to letting it out, once we get out of the hospital.

Does anyone have any thoughts on Rumination Syndrome I have lots of calls into eating disorder people but its Friday. It is hard to find a eating disorder person who knows anything about PANDAS. I don't know where to turn.

We are in Southeastern VA if that helps.




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This is very interesting to me as my younger PANDAS son does the exact same thing, but, to a lesser degree.(his is not constant, the food is not actually projected and he has suffered no weight loss or dehydration) I have posted about it before because if was baffling. We would call it his "spit ups." It waxes and wanes...still does it from time to time. He will eat and then food will just involuntarily regurgitate up into his mouth. I can actually see his stomach just contract and up it comes. It is clearly not voluntary. It never burned. First, it was thought to be GERD...but, it didn't seem to fit and GERD meds didn't help so we opted for an endoscopy to see if we could find the cause. No inflammation in the esophagus (No GERD)...no bacteria/parasites...he was biopsied for just about everything...celiac, H.pylori, etc. Absolutely nothing. Rumination disorder was also ruled out. We came to the "throw our hand up in the air" conclusion that it is indeed linked to his PANDAS.....which is what I felt all along because of the way it behaved...and the fact that it would surface when exposed to illness, etc. WE don't think it is OCD related (he was mostly OCD but also a ticcer...the works)...we feel it is an internal tic. When the food hits his stomach (or wherever it needs to hit to cause the "spit up" ), it causes a sensory reaction that is implicated in tics, the stomach muscles or whatever muscles affected in there spasm...or tic, causing the food to be pushed up. Any muscle can be involved in tics. He has "bouts" of these spit ups. It can be once after eating or up to 5 or 6 times in a row. Sounds familiar..."bouts of tics." Could we be wrong?? Yep, but, there has been no other explanation found. He also had a barium swallow because of this. They just could not find anything...so, we all feel confident about this. For us, it is not a stressor because it is minor and not causing any damage or inflammation...no problems with growth...he is on no meds for it. However, I can surely see how it could take a turn for the worse as in your sons case. It may be extremely difficult for your son to control if in fact it is some kind of tic. Perhaps you can run this by the docs...who knows...just maybe. Either way I hope your son finds relief soon!

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Thanks for the thoughts! They have sent biopsies in but do not have results. Nothing looked unusual with the GI scan but they sent biopsies anyway. They do not think there is any kind of bacteria or infection. They really aren't giving any diagnosis. But because he is keeping food down they have sent him home. He will be getting night feeds with an NG tube and eating what he can during the day. They will evaluate him next week to make sure he is maintaining weight. What scares me is he has forced himself to vomit in the past to lose weight and even though it is involuntary now can he make it stop? Would normal eating disorder counseling help? I have looked up rumination syndrome online and he fits that very well. I have called two hospitals that treat rumination and left messages. We have been told by PANDAS doc that it is all from PANDAS and that once the IVIG and antibiotics do their job he will be fine and psychological counseling isn't needed. I would love for treatment to kick in and he wake up one day and be perfectly fine. I trust our PANDAS doc but with his history of eating disorder and OCD with food that sounds to good to be true.

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I am so sorry you are going through this and that your son is dealing with this--


Was he "throwing everything up" BEFORE IVIG?

Have you seen ANY change since the IVIG? (good or bad)


Could the vomiting be a reaction to the antibiotics, or c-diff?

I am sure you have already considered all of these.


I really wanted to share with you that we currently have our older d seeing an eating disorders team as she has PANDAS Anorexia, and it is not good. We did an immune-modulating treatment and are now looking at doing another.


This is nothing to play around with, everyone agrees, that even though it is PANDAS related/triggered, it is STILL ANOREXIA in my d's case.


(I keep thinking of the phrase: 'If it walks like a duck, sounds like a duck, looks like a duck...') In which case she needs help and fast. My d is a teen too, and regardless if the compulsions go away, the learned habits and anorexic behaviors may linger, and that is where we felt we needed help from a team skilled in addressing eating disorders/anorexia.


It is easy for others to suggest that once he gets an immune-modulating treatment his Ps and anorexia will go away, but the fact is you have a child w/ a NG tube and that has got to be dealt from all sides.


While I obviously believe that immune-modulating treatments may work on anorexia if it is Ps anorexia (as we have pursued the same) I am truly wondering whether or not a child can truly "get over" anorexia (Ps induced or otherwise) without getting back to a normal weight -- and is this critical to stabilizing brain function?


That is where addressing the anorexia issues comes into play, so their brain gets re-nourished to the point that it is able to settle back to normal, or perhaps be able to take advantage of the IVIG you have done? --regardless, I think you need a anorexia team pronto helping you with this, for his sake and yours. --this is a slippery slope.

Edited by T.Mom
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He had this same bout of throwing up last year from February-July bad it was not as severe. GI ran all sorts of test and everything was normal. When it stopped in July we forgot about it and stopped looking for answers. He had his first IVIG in early October 2011 but the throwing up wasent an issue at the time. We saw improvement in other areas for about six weeks. In mid November he began some throwing up but not severe until Tuesday November 29 it become every drop of water and bit of food. Thursday we saw PANDAS doc and had IVIG Friday and Monday but by Tuesday he had to be hospitalized. We will continue antibiotics, IVIG monthly, but i feel we need to add eating disorder treatment. They let him out of hospital because he told them he was not throwing up at all, but once home he admitted he threw up twice yesterday and I know he has thrown up twice since we got home 4 hours ago.

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but i feel we need to add eating disorder treatment.


we had a short bit of extreme OCD non-eating with ds7 last year July. i believe it was due to the addition to an anti-viral treatment. our integrative dr believes it was likely a symptom that just hadn't appeared yet and if left untreated, would have eventually shown up. the extreme part was failry short -- a week or so -- but extreme! -- he drank just enough each day to keep himselft out of the ER for hydration. it came on with questions about expiration dates and quickly progressed. seemingly the only change was the addition of the anti-viral. it began to dissipate, seemingly due to nothing we did. he began eating enough after about a week but was slower to shed other wierd food things.



for us, it was quick and moved out of severe worry soon, HOWEVER. it was very interesting to me to observe and be a part of such an extreme situation where it was easy to see how the psychiatric and/or neurological basis are then affected by the psychology -- meaning -- how our actions and interactions with him concerning his behavior did and could have further exacerbated the troublesome behavior.


so, i agree with tmom that an eating disorder team would be a good step even though you believe it to be related to pandas and ivig. in fact, this is a good reminder to me, that i don't really have such a good plan b in place if we see this type of thing again.

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The thing about PANDAS is that it causes neurological reactions--and when you think about it--what DOESN'T qualify as a neurological reaction? Our doc pointed this out when we brought in our son for what we thought was a bladder infection. It wasn't, but he chalked it up to PANDAS. I know we don't want to always attribute everything to that in fear of not finding another valid cause, but the brain controls pretty much everything. So it seems like this could qualify.

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