Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Megan's Gagging Isn't Any Better


TCA

Recommended Posts

VydorScope Proficient

She got in to Rondal McD's the second night. What a hug blessing that was!

And Lisa is owed a thanks for that btw all, dont let me steal all the love here!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 882
  • Created
  • Last Reply
key Contributor

Thinking of little Megan and of course her mommy and daddy! I am glad she is through the surgery. I will continue to pray for her to make a complete recovery!

HUGS!!!!

Monica

Fiddle-Faddle Community Regular

Thank you, Vincent, for keeping us updated and for keeping such a watchful eye on "our" Tanya and Megan!

Guest Robbin

Tanya, if you want to ask the other mom (the one who has been there for 52 days) for her first name and her child's, we could add her to our prayers...does she know about caringbridge.org?

Alison, I was wondering the exact same thing. Their story really gives one pause--I would like to pray for her and her son. How lonely and scared she must be.

Thank God Tanya has such a great support system with her parents and in-laws to help with Cole--what a trouper he is :) Keeping up the prayers through the recovery--we love you, Megan!

Canadian Karen Community Regular

Such wonderful new to read! Just so relieved here, she continues to improve....

God is watching over her.......

Hugs.

Karen

evie Rookie

[quote name='Canadian Karen' date='Jul 26 2006, 09:26 PM'

Such wonderful new to read! Just so relieved here, she continues to improve....

God is watching over her.......

Hugs.

Karen

Judyin Philly Enthusiast

Thanks Lisa and Vincent--

Tanya, just cking in before i went to bed.

Glad to see the up dates and happy Cole has some time with mom too.

so glad your in R Mc house. bet it's a 'safe' place to be. Megan seems to be doing so well. God answered our surgery prayers now the 'healing' prayers continue.

hugs and prayers & love

Judy


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VydorScope Proficient

MEGAN UPDATE

THURSDAY, JULY 27, 2006 08:19 AM, CDT

Megan is alert, but NOT happy. Jarod says her mother's temper is showing. I'll neither confirm nor deny! She has had a few times where she sits and calmly looks around at everything, but she's not feeling like smiling yet, but that will come.

She had a pretty strange night. In a matter of about 20 mins. her temp went from about 99 to 104 and it took us forever to get it down. We had to use ice bags, fans and cold water. She was screaming so bad, so we put her in my lap so I could rock her for a few hours to get her calm enough to keep the ice on. It finally came down, but is still hovering around 99. This is very concerning this far out from surgery. Blood work shows a slightly elevated white blood cell count, but that could be caused by surgery itself. She's on heavy antibiotics, vancomyacin and gentamyacin, that are broad spectrum. Hopefully they would take care of most things if it's caused by anything infectious. Today the doctors will be trying to figure out the mystery.

She is now off of all IV drips and starting regular medications. She's making progress, we're just still worried about the fever.

I'll update more today as we find out, but for now please pray for the fever issue to be resolved.

Odviously the clock on Carringbrdige must be wrong. :)

Cheri A Contributor

Prayers for wisdom for the drs, nurses and everyone who is caring for Megan today. I pray that the fever goes down and she continues to heal and recover. I pray for Tanya, Jarod, Cole and the grandparents.

I also really was sad to read about the lady there alone with her child. I pray for them also!

Daxin Explorer

I just want to add my name to the list of people who are continuing every day to pray for you all. I have been following here and on caringbridge, and am amazed at what all the prayers have accomplished through the skill and dedication of all the doctors.

I continue to pray for strength and emational endurace for you all, and a speedy recovery for Megan.

AndreaB Contributor

We will continue to pray for Megan's recovery and that her fever will come down and stabilize soon and that the doctors will find what is causing the fever to begin with.

Hugs and love to you all.

Fiddle-Faddle Community Regular

Hang in there, Tanya. The first 24 hours after Michael came off the ventilator were very uncomfortable for him. He was wanted to nurse, but they said he had to keep down either formula or apple juice before he was allowed to nurse (the idiots--I told them that apple juice gave him diarrhea and formula gave him terrible tummyaches, and they wouldn't even let me give him plain water :ph34r: )

Anyway, he was terribly thirsty, his throat must have been terribly sore--and they got him up and walking around 24 hours after surgery to "walk off" the gas that had accumulated in his belly (which seemed to cause him a LOT of pain).

What seemed to help him feel better was just hearing my voice and touch--it didn't matter what I was saying. I got a cool, damp washcloth, and gently wiped his little face, and said over and over, "Now I'm wiping your eyebrows, now I'm wiping your cheek, etc" and he would relax and stop crying every time I did that.

Still sending prayers from PA! (Thanks, Vincent, for the updates!)

VydorScope Proficient

No updates all day ... I will call here tommorow if I dont hear I gues.... :huh:

Judyin Philly Enthusiast

Vincent --she just posted on the Megan thread at the hospital.

i sent a note there.

you can up date if you have time or i can ..i didn't want to jump in..

was just coming to see if you were on. will put this in a pm to you too

judy

VydorScope Proficient

Odd it was not showing up for me till now.. wle here it is!

Sorry that I haven't written more today, but I had more time to spend with Cole and did that instead. I'll try to do better.

Megan has had a good day. She got all 3 chest tubes out today. She's still very alert, but no smiles yet. She's on oxygen for now to keep her oxygen saturations up, but that shouldn't be for much longer. Her fever is staying between 99-102. We're keeping a close eye on it. Still no signs of infection. One doctor thinks it may just be a delayed response to being on the bypass machine. She's doing so well otherwise, but she's still going to be in PCCU for at least tonight.

She's tolerating her feeds well and at the same rate as before surgery. She is still gagging some, but maybe not quite as bad, which is good. At least we can address the GI issues once we get all of this behind us.

Her swelling is much better tonight and she's looking much more like herself. Her beautiful eyes are watching everything that goes on, even though she's lying quietly. She doesn't feel like moving much, but she's still a "Nosey Rosey".

Thanks again for all the prayers. It really is miraculous how good she looks after going through so much. Just keep praying for the fever to go down. God Bless!

Lisa Mentor

I always worry about not word, Judy or Vincent, we would love to hear...........

I always thought that no news was good news, but not in this case.... please let us hear.

Lisa

VydorScope Proficient

Yay dont be afriad to post the updates! I am not on the computer as much as someof you and will miss them :)

schuyler Apprentice

I'm so glad that Megan's doing well. I just hope and pray that there will not be any infections and that her fever will remain in control.

Danielle

Judyin Philly Enthusiast

VINCENT & LISA

I HAVE BEEN CK'N ALL EVENING BUT WASN'T ON MUCH TODAY EITHER.

I DO HAVE THE TIME VINCENT, IF '2' MORE EYES WILL HELP YOU I'LL BE HAPPY TO PICK UP IF IT WILL HELP YOU. I'M NOT 'EMPLOYED' OUTSIDE THE HOME NOW SO PROBABLY HAVE MORE TIME TO HELP?

YOU HAVE DONE SO MUCH --BOTH OF YOU--I JUST WASN'T SURE IF I SHOULD POST..WASN'T SURE WHAT TO SAY BUT WILL TAKE YOUR 'LEAD' AND JUST DO A POST NO COMMENT.

I WAS GETTING SO WORRIED AS THERE WAS NO WORD. I KNOW I HAVE TROUBLE SOMETIMES GETTING ON THE HOSPITAL LINK..SEEMS THERE ARE PROBLEMS WITH MY 'COOKIES' :lol: WHAT EVER THE HELL THAT MEANS.

STILL CONFUSED AS TO THE TIME DIFFERENCE...IS SHE 1 HR BEHIND US???? :blink: THINK THAT'S WHAT PEOPLE SAID.

GOSH, I PRAY THAT FEVER IS JUST DUE TO WHATEVER IT WAS TANYA SAID...

GUESS THAT'S ALL WE CAN DO.

KNOW TANYA HAS SO MANY THINGS TO DO BESIDE POST BUT ALSO KNOW HOW MUCH ALL OF US ARE ANXIOUS TO HEAR ANY NEWS.

THANKS TO YOU BOTH.

LOVE

JUDY

jerseyangel Proficient

Hi Lisa, Judy and Vincent :D Thanks for the update! I have been off line for a while and was wondering about Megan. Hadn't heard anything since this morning. You guys are really something :)

Lisa Mentor

Judy and Patti;

I want to thank you for including my name on the thank you list. But Vincent was truely behind the prayers. He kept us all updated, he made the phone callls, he made the road trips. He was there to everything available to him as well as having a job.

I simply made a phone call (networking) to someone I happened to know, who I thought POSSIBLY could expedite a secured room for the Andrews at the McD's House to make their stay a little more comfortable. Whether it helped, or things just fell into place, who knows. Maybe it was a little push on their behalf.

Never the less, they are there, Meg's is doing better and with hopes she will continue on her path. Cole is getting Mommy time and a whole pot full of people pulling for them.

I am not a religious person, but perhaps more spiritual. Praying to God is not necessarily what I do, but I am an incredibly compassionate person. Compassion is another man's religion. And there I am.

Thank you for including me in your thanks. Who would not want to help baby Meg. :)

Lisa

VydorScope Proficient

I think the clock on the carringbridge site is just wrong. :) So dont let it worry you Judy. :)

Judyin Philly Enthusiast

Thanks you guys :)

I've done absolutly nothing but care and pray...

Lisa, loved your post to Vincent...I dito it all.

Vincent, don't know how you've done all you have with a full time job, but know it has been a taxing week for you. I hope you can do what lisa suggested and at least take an hr and do something nice for JUST YOU.

I'd send you some of my cookies...but.... :ph34r: you and I know that wouldn't be a 'nice gift' :lol: but maybe some day i'll cook something good and by golly, i'll send yousome :)

If we are all this emotionally drained...I can't imagine how Tanya hubby and family must feel..probably just in limo and taking it a minute at a time..

they are amazing aren't they? It's so rewarding to see all the post from around the US and other places. Very impressive.

Don't think you guys knew it and I MEANT TO MAKE A SPECIAL POST ABOUT IT...BUT OF COURSE FORGOT TO DO IT...BUT WILL MENTION IT NOW..

IT'S ABOUT MY DEAR NEW FRIEND PATTI--

WHEN I CALLED HER SHE WANTED JIM AND I TO COME AND STAY AT THEIR HOUSE WHILE OUR POWER WAS OUT...IS THIS SOME BOARD OF FRIENDS!!!!

HECK, NONE OUR OUR FRIENDS HERE OFFERED.. :blink: BUT IT WASN'T THEIR FAULT AS WE DIDN'T TELL ANYONE AS WE HAD NO PHONE.

SO WHO DID I CALL????

SOMEONE ON THE FORUM...PATTI AND MARK WERE SURE THERE...THANKS AGAIN PATTI!

WELL, THINK I'M TURNING IN.

WILL CK FORUM TOPICS AND THEN OFF TO BED. jUST WANTED TO SEE IF ANYTHING NEW WAS POSTED.

NITE

JUDY

VydorScope Proficient

MEGAN UPDATES!

THURSDAY, JULY 27, 2006 11:53 PM, CDT

Megan's fever is spiking again tonight, up to 104. It's coming down now, though. Still a mystery as to why. Otherwise she's doing well. Her heart rate is getting close to normal when her temp is down, so that is progress. Hopefully the fevers will subside through the night.

and...

FRIDAY, JULY 28, 2006 12:33 AM, CDT

Fever is back down under 100 F. They've started giving Motrin instead of Tylenol, and that seems to have helped a little. Oh, and she just smiled for the first time since Tuesday morning, which makes us feel better about how she's feeling.

JA

jerseyangel Proficient

Hope that his time, the fever breaks for good. She's smiling! What great news :D

Hey Judy--You guys should have come over--just think, TWO Celiacs in one house! We probably would have driven our husbands completely over the edge :lol:

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.