Severe nausea

[1tiredmama]

I've seen some parents here mention nausea, but usually as it relates to antibiotics or other treatments for PANDAS Since ds17 is only just starting treatment, I can safely say that his stomach issues are not treatment-related. He lost 20lbs in January during a horrible flare. He improved for awhile and gained back 5lbs. But, now it's getting real bad again and it's SO hard to watch. We saw the ped today, and found that he is losing weight again, 5 lbs in probably two weeks. Our wonderful ped gave us a prescription for Zofran. Ds HAS to be able to eat so that he can take his abx and other meds.

 

Dr. L. said that huge drops in weight in a short period of time are not unusual, as anorexia is a symptom of PANDAS. She went on to say that anorexia is not limited to anorexia nervosa. Apparently, some patients lose weight because they feel very full too soon into eating--ds has this problem also. This was the first time anyone had mentioned weight loss/anorexia related to PANDAS without the nervosa/fear/OCD part. My ds LOVES to eat. No fear there!

 

So, I am wondering if anyone else's child has gone through flares of nausea/vomiting that were directly caused by the PANDAS condition. If so, did your doctor offer any insight into what causes this? And, did it go away once the PANDAS was under control?

 

PS I should add that ds has already had an endoscopy, a biopsy and a sonogram--all completely normal.

Edited May 21, 2012 by 1tiredmama

[lozsdad]

Hi 1tiredmama

My dd has been diagnoised with Pandas now for 3 years, her symptom have always been unusual so hence when she stopped eating now 6 weeks ago all of a sudden (have not seen this before)

alarm bells did ring and we placed her on abx for a short period of time .

Her appetite has completely disappeared, when she does eat something she gets cramps and feels nauseated and hence an easy fix for her is to stop eating.

I can tell you also it is not abx related and even though she has lost over 12 kg we are not getting much assistance from doctors apart from the usual medication at beginning for nausea and an ultra sound and the usual standard blood tests.

Im afraid you can only survive on dry biscuits and water for so long therfor we also need to do something soon.

[tpotter]

Hi 1tiredmama

My dd has been diagnoised with Pandas now for 3 years, her symptom have always been unusual so hence when she stopped eating now 6 weeks ago all of a sudden (have not seen this before)

alarm bells did ring and we placed her on abx for a short period of time .

Her appetite has completely disappeared, when she does eat something she gets cramps and feels nauseated and hence an easy fix for her is to stop eating.

I can tell you also it is not abx related and even though she has lost over 12 kg we are not getting much assistance from doctors apart from the usual medication at beginning for nausea and an ultra sound and the usual standard blood tests.

Im afraid you can only survive on dry biscuits and water for so long therfor we also need to do something soon.

 

 

Yes, DS16 regularly gets chronic nausea when he has strep. Goes away when treated properly (sometimes that has come down to IV abx for him.)

 

That being said, I would also highly suggest that you test for c-diff, h-pylori, and giardia. DS19 lost 25 lbs, and we were told (even by gastro) that nothing was wrong. Turned out he had c-diff (forum member suggested it to me, and that's exactly what it was.) He has now had 3 separate c-diff flares, and cannot take abx anymore. The 17 yo may be able to do a breath test for the h-pylori. If not, all of them are stool cultures. I wouldn't assume that it's not there, but rather just test for them.

[LNN]

You may want to read Answers to Anorexia by Dr James Greenblatt http://www.jamesgreenblattmd.com/jgreenblatt-anorexia-overview.htm. He feels there's a strong and documented link between AN and zinc deficiency. It's an easy read and offers very practical advice and testing ideas. Zinc is also essential to the immune system so a deficiency could lead to multiple problems.

 

Her not eating had nothing to do with OCD. She tested negative for H Pylori, Celiacs, normal endoscope. Between a zinc/b6 supplement and treating my DD's methylation/folate deficiencies, she eats like a normal human being for the first time in her life and is now normal weight.

[lulu4]

My dd11's symptoms for pandas have long included the nausea. She's been on abx only 29 days and some of it has improved. She was eating better too. Yesterday she awoke with a sore throat, and by suppertime had no appetite. However, one of her compulsions is she has to eat, so although she doesn't want to, she makes herself do. This has saved her from losing weight these whole 6 months. I have increased her B vitamins and perhaps this is one of the things that has helped her appetitite in the last month. I will check what dose of zinc she is getting.

Sorry about your son. I read about the anorexia component when I learned of pandas and have been so grateful that although my dd has some of those symptoms and has greatly restricted her diet, she is still eating. I hope you see some improvement soon.

[1tiredmama]

I'm so glad to see so many responses! Maybe by sharing our experiences and putting our heads together, we can learn something new!

 

@ lozdad, it is very easy for our kids to compound a physical problem by avoiding food. I see my son do this, at times. He loves to eat, but in a flare he is AFRAID to eat even between spells of nausea. My experience has been that doctors don't want anything to do with you once they realize that they don't know what is wrong. Zofran was a lifesaver for ds during his hospitalization. I am grateful for the prescription for home--they melt in the mouth! Good luck with your dd...

 

@ tpotter, ds is negative for h.pylori. When he was a toddler he had c. diff. It presented as months of diarrhea. Can it present with nausea, no diarrhea?

 

@ LLM, thank you for the link. I will read it tonight. I will also educate myself on zinc,

 

@ lulu, I am curious to see if the abx treatment helps with the nausea. Dr. L. said that it might. I hope your dd finds complete relief soon.

[Kiera]

My ds is borderline underweight and the reasons I believe are

1) Poor appitite - eats a few bites then not hungry anymore, the anxiety of pandas can cause poor appitite

2) Sensory - in flares his sensory issues go off the wall including smells, taste, texture etc so food choices become more picky too, even goes off foods he normally likes

 

I know some pandas kids poor appitite revolves around an OCD fear of choking, fear of vomiting etc, don't think this is my ds

 

My ds has had many GI tests done, all normal. A short 5 wk course of periactin made him gain 10lbs in the 5 wks, and eliminated slow motility and slow gastric emptying as a cause. I just think it's another pandas symptom and am hoping it will improve with the ivig we just did!