Posted By Posting
Dec 07, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Engi
Hi Engi...Have you ever researched: paroxysmal extreme pain disorder?? I don't know enough about Meggy's symptoms, but it came accross my mind with the last post. I hope this gets figured out soon. HUGS
Dec 07, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Thank you! We just got home from sleep study. I will research later today.
Dec 07, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
Has she ever had an echocardiogram done??
Dec 07, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
I think her last Echo was in February. I am concerned about her heart too though for 2 reasons: 1.) Her BP seems to be high at times even when not crying. 2.) Sometimes when she is crying she will hold her chest saying owies.

Her holter monitor in February showed early beats, clusters of tachycardia and bradycardia and something else that I can't remember this very moment. Her echocardiogram was normal.

I am thinking I will schedule her for check up soon. We just cannot do another holter til after her MRI on the 16.

Dec 07, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
wow, u r amazing in the things u find. Now if I can convince anyone to test Meggy and I. I have actually exhibited many of the symptoms here.

I used to faint often and all they could figure is my body could not handle the level of pain I endured and would literally just shut down.

I have many of Meggy's symptoms, but no one would ever sit down and help me to figure it out. Although, with Meggy I won't stop till I have answers. I know there has to be a way to help with her pain.

My mother in law is an eye doctor in Egypt and she said the video would present to her like a migraine, maybe even stomach migraine. My brother in law is in med school in Egypt and suggested the same thing.

Thank you for your help.

Dec 07, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
emily holds her chest sometimes and says "owie" or "hurt" or "hot" i just always attributed it to reflux especially if she said "hot", i never thought of heart problems.

I had asked out GI about abdominal (stomach) migraines and he said it's extremely rare (even rarer in kids under 2) and only diagnosed when ALL else is ruled out... a lot of emily's symptoms seem to match the abdominal migraines at times. I think she does get these but they are in combination with whatever else is going one... we have our scope tomorrow to hopefully diagnosis or rule out a lot of things...
Check with your
doctor first!