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Chronic Nausea

Posted: November 24th 2008

ljfgeorgia

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Hi all -

I am new to this site and am still trying to find my way through it - I cannot believe the amount of information here - practical, helpful information. 

I am the mom of Jack and Abby - Jack was diagnosed with mito in 1999 and he went to Heaven in 2001 at the age of 7.  Abby is now 11 1/2 and has been much less symptomatic throughout her life - in fact, if it had not been for Jack's diagnosis we may not have even known that she had the disease.  But, as she has gotten older, the disparity between herself and kids her age became greater and she became more symptomatic.  A muscle biopsy was done in December of 06 and she was diagnosed with Complex I.

In August of last year she got 3 bacterial infections at one time - H Pylori, C Diff and Giardia.  It took a toll on her and began a down turn in her health that ranged from leg pain, joint pain and headaches, to chronic, severe bouts of nausea (she does not vomit or have loose stools so she get the nausea symptoms but no "relief"), her constipation and dysmotility worsened, chronic UTIs and she had a terrible time falling asleep and staying asleep.  By far the worst symptoms for her were the sleep issues and the chronic nausea.  We tried every avenue of treatment and it was finally decided in April of 08 to do a trial of IVIG, as our son had been on it and it had helped his symptoms.  The results were very, very good and she continued to have really a return to baseline for six months, with the exception of, in the last week prior to her infusion she twice got recurrent UTIs.  Then, in October, she contracted C Diff again.  We treated the C Diff and she had a reaction to the antibiotic that caused eye and urine discoloration.  The antibiotic was stopped and she was put on a probiotic.  The C Diff is suppressed right now, but will likely be a battle for her from hereon out.  However, the nausea is back with a vengeance - it is debilitating.  We treat her with Zofran, Phenergan and Lorazepam.  She is eating very little, is more fatigued than I have ever seen her, having joint pain again, etc.

I know that GI problems are a commonality amongst many mito patients.  I was wondering if anyone had any input regarding the nausea and treating it as well as anyone with input regarding recurrent C Diff?

Thanks so much - I appreciate it.

Lauren FitzPatrick

Woodstock, GA

 

 

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Lauren - Mom to Jack, Abby and Seth

Hi Lauren, How are your

Submitted by kayjay on Tue, 12/02/2008 - 7:37pm.

Hi Lauren, How are your daughters medications for her naseau given, orally or rectally? The reason I ask is that I have heard other parents state that the medications that they were giving their children for naseau by mouth sometimes made them more nauseous, but when they switched and used a suspository anti naseau med it seemed to be better absorbed and they had better outcomes. I don't have any particular experience with naseau medications with my children, but it may be worth asking your GI or pediatrician if they think a supository would work better...good luck, kayjay

Hi Kayjay - We have tried

Submitted by ljfgeorgia on Thu, 12/04/2008 - 1:37pm.

Hi Kayjay - We have tried both orally, rectally and intravenous. The IV works best and fastest of course, but there was no real difference between the rectal or oral drugs. We did find that the orally disentegrating Zofran worked better than just swallowing a pill. I have spent the last 2 days compiling her latest records and putting it all in a binder and writing a summary. They were shipped out today to Dr. Flores in Boston - Our ped spoke with him last week and he said he would like to evaluate her. Hopefully he will have some input and direction, and maybe this southern family will get to see snow this winter! Thanks for asking - Lauren
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Lauren - Mom to Jack, Abby and Seth

Hi Lauren, Dr. Flores is a

Submitted by kayjay on Thu, 12/04/2008 - 9:27pm.

Hi Lauren, Dr. Flores is a very good doctor. It will be interesting to see what options he comes up with. Best of luck and if I hear of anything I will re post...be well, Kayjay

Hi, My son has dysmotility.

Submitted by heather on Mon, 03/01/2010 - 2:52pm.

Hi, My son has dysmotility. When his stomach decided to stop working all together in January 2010 he began vomiting and dry heaving constantly. We had noticed over the course of his Mito and dysmotility that when his stomach is acting up his mito also is. We also discovered that He must get the Zofran 3x a day weather he is sick or not. If he does not he will dry heave and feel very sick to his stomach. So Zofran has become a daily med that we give via J-tube. He see's Dr. Dilorenzo a motility specialist at Nationwide Childrens in Columbus Ohio. Hope this helps in one way or another.