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Sep 14, 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.
Spasms again
Meggy and I were up most of the night again with her horrible tummy spasms. Our last 2 days have been great(pain wise), but then night time rolls around about 9PM things have gotten more than a little rough. Levsin helps sometimes, but not lately. The day before yesterday she totally refused to eat. Yesterday she ate then paid dearly for it with pain. During the day she distracts herself so well. She starts getting into everything and getting clumsy when the pain is bad. I can tell because she will try to run faster and get in such a hurry with everything that she falls all over the place.

I don't know why we can't figure this out and do something so that she isn't always in so much pain. I am just Thankful that we see the GI Tuesday and John Hopkins on Thursday. Enough is enough. I am really hoping and praying God will send us wisdom.

She had lost weight again at her check up this past week-DUH!, and again the doc. dismissed her pain. I really don't think we can expect her to grow or even maintain weight when she hurts so much, and she knows food is the culprit. (they say-how about a feeding tube.-force feed her) (we know from experience this only makes the pain worse and only works around the real problem.) This morning she cries just at the sight of her sippy. Meggy is playing happily otherwise, but when she sees food or drink the tears flow. I imagine Meggy is so hungry, but the hunger pain is more tolerable than the pain she endures from eating. Can't push her to eat because this will further her food aversions and create a negative eating experience. She generally loves to eat, just not the pain that comes with it.

I will ask the GI about maltrotation and also about Oesophageal Spasms this visit. Hopefully I won't forget for lack of sleep.

During her happy 2 days, I made sure to take lots of pictures. I also took a few 30 sec. videos of which her grandparents were thrilled.

If anyone has suggestions or ideas, I am open. I want her to have great nights and great days.

This is generally how it goes though with cycles of pain. She eats great for a few days, then pays so dearly for it, then refuses food the next few days, then eats great.

I feel a little discouraged this morning and so tired I am having a hard time keeping my eyes open, but I refuse to give up. I will keep looking, working to find answers, and praying.

Sep 14, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
I am so sorry that Meggy is experiencing this horrible pain again. It must be awful to go through with her. I agree on not force feeding her, but at the same time she's got to eat/drink something. I really really hope that the new GI can provide some answers. Good for you for being so wise to celebrate the two good days that you had, hopefully someday soon you'll look back at your pictures and only remember the good stuff. Hugs to you and Meggy!
Sep 14, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
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I am so sorry you and Meggy are going through this. I def agree don't force feed her. I hope the GI has some answers for you-or at least won't dismiss you and Meggy!
Sep 14, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
http://www.articles.complexchild.com/00006.html

Take a look at this article. It is about Viscreal Hyperglesia. Basicaly abdominal pain caused from eating. I know the lady who write this e-magazing and she knows her stuff.....she's samart. Her DD had this. Another member here (jessicalynn), her DS has this as well.

It is treated with pain medications. Alot of dr won't bring it up because it is VERY uncommon.

As far as force feedign with tube feeds, if her belly is that sensitive they shoudl have done a continuos feed to see if she tolearated that better. Did they try that????

I imagine not because they normally start with boluses. which a child with hyper agleasia would have a had time with in the first place.

Have you had an UGI yet?? That would have showed a malrotation. And a child with a malrotation would not be keepign ANYTHING down by this point in their life. It would have been found by now. that's why we forewent having another UGI done on Jedd.

I would also sugest to keep a food log so that you can try and figure out if certain foods are triggaring these epododes oa sever pain. Kids with EE can have some VERY serious pain when it comes to eating the "wrong" foods. The pain like that can also be a sign of EE. Physically those foods WILL cause LOTS of pain. I would try to keep the log from now until the Dr sees you. You can also keep any syoptoms on that list as well. Anythign that you think coudl possibly help to get answers. HTH

Sep 14, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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According to Elyse's surgeon, many MANY children get diagnosed with malrotation later in life....he said around 4 years old. And Elyse's UGIs *helped* dx her malrotation, but they did a lower one too (barium enema) which is when they confirmed it. I think it is still worth asking about.
Sep 14, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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Here's a little blurb from a website: according to this MOST kids are diagnosed in their first year, but 10-25% are not. If you think she has symptoms, it doesn't hurt to ask the dr. Elyse's surgeon told us that even elderly people are found to have it, they were just asymptomatic their whole life. There is a wide range in severity.

Twenty-five to 40 percent of cases are diagnosed in the first week of life. Fifty to 60 percent are diagnosed by the first month of life. Seventy-five to 90 percent are diagnosed by one year of age. The remaining cases (10 to 25 percent) are diagnosed after one year of age.

Some people who have malrotation go through their entire life without having any symptoms and are never diagnosed. Others may not have symptoms until childhood, adolescence, or adulthood.

http://www.childrenshospital.org/az/Site1181/mainpageS1181P0.html

Sep 15, 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.
Meggy ate a little bit of lunch yesterday and a little bit of dinner. She only drank 6 ounces of liquid. It wasn't a great day, but I am glad that she did eat and drink a little. I am hoping today will be a much better day.
Check with your
doctor first!