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

Canadian Karen Community Regular

Dear TCA!

I am so wonderfully happy to hear the improvements Megan is making! Even coming through a cold with flying colours shows how much stronger she is getting! It's also wonderful to hear that she is starting to taste foods. Interesting that her favourites seem to be salty stuff. She sounds exactly like me!

On another note, When you mentioned you got a walker at a yard sale, my internal warning signals started beeping wildly. Please, if you happen to have stairs in your house, reconsider having a walker and get a stationery exersaucer instead..... I wouldn't be able to stand it if there was a tragic incident involving the walker and stairs, NOT AFTER EVERYTHING SHE HAS BEEN THROUGH!!! :unsure:

Please keep the updates coming. They brighten my day!

Hugs.

Karen


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



Celiac.com Sponsor (A8-M):



  • Replies 882
  • Created
  • Last Reply
Fiddle-Faddle Community Regular

What marvelous news!!!!!

. It would not be surpising if gluten was causing her so much difficulty.

NoGluGirl, I think TCA totally eliminated gluten about a year ago!

I second Karen's concern's about the walker--everything I have read says that they are at best, not helpful for walking skills, and at worst extremely dangerous in that the child can scoot very quickly into a dangerous situation without the parent realizing. Stairs are the obvious danger, but stoves are also dangerous, tables with heavy lamps, tables set with tablecloth, china, knives, etc.

The daycare my children attended got rid of walkers about 10 eyars ago, and only uses exersaucers.

nikki-uk Enthusiast

Tanya,so glad to hear Megan is improving- and getting familiar with food.

The fact that she managed to get 'just a cold' instead of a raging chest infection tells you how far she has come!!!!

:):):)

TCA Contributor

Thanks everyone for the concerns about the walker, but this was something that her PT and I discussed for about 2 mos before getting it. We have no stairs that she can possibly access with it. The yard sale was one of my husband's best friends and I cleaned it thoroughly first. We have an exersaucer, which she uses often, but the PT thought this might help her to realize that she can be mobile on her own. She refuses to be on her tummy at all and since she can roll over very well, we can't keep her there. Trust me, I'm VERY cautious and wouldn't do ANYTHING to risk her health at all. I was aware of the drawbacks, but it was something the PT thought might be worth a shot in getting her to stand. I promise to be careful with "our" baby! :P

NoGluGirl - Yes, we've been gluten-free around her for 13 mos now!!! I think ragweed is the culprit rather than gluten! My son and I are both allergic and we have allergies right now too! I hope you improve soon!

Nikki - great picture!

VydorScope Proficient
I really do appreciate the offer to give blood again, but we should be able to cover it. I was planning to give, but you may have a point. We have 6 family members who have given for her before, though and are anxious to do so again. 3 have never given before and this gives them incentive! (Is that mean of me? :huh: ) As for getting a sitter for Tim, it is a children's hospital and hyper is common! They let Cole in there! We'll see how the plans are shaping up closer to the cath and make contact. You really are a saint and I so appreciate your willingness to help out. "God blesses us so much", as Cole would say. :):):)

LOL Your as bad as the Red Cross Vampires! :D

Judyin Philly Enthusiast

Dear Tanya

haven't been posting much but so glad to see this GREAT NEWS.

I THINK THE WALKER is a great solution for helping her get her leg muscles to get stonger and realize she can walk around with that tool.

You have made excellent decisions for Megs care in the past and know this is another one that you did not make lightly as it took 2 months. NO STEPS..THE VERY BEST OF ALL WORLDS.

MY LOVE AND PRAYERS STILL FOLLOW YOU DAILY

HUGS

JUDY IN PHILLY

Canadian Karen Community Regular

Hi Tanya,

I hope you didn't take any offense to my pointing out the dangers of walkers. It was in no way meant to imply that you were not being other than a totally loving parent who has your child's best interest at heart. But if I didn't voice my concern, and something did end up happening, I would have never forgiven myself.

I know you know what you are doing and if my comment was taken the wrong way, I am deeply sorry.....

Hugs.

Karen


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



Celiac.com Sponsor (A8-M):



Judyin Philly Enthusiast

oh dear, Karen please don't be upset. i didn't mean anything ..

you know i don't seem to get the words out the way i want anymore.

i'm glad you warned her about walkers. of course they can be so dangerous.

guess it's just time to hang up trying to type what i want to say.

it's just not working any more.

judy

Canadian Karen Community Regular

That's okay, Judy :D

I was just worried that she took my comment the wrong way....

Hugs as always!

Karen

mouse Enthusiast

Tanya that is such great news about Megan. At the rate she is improving, you will be posting to us in about 1 1/2 years (that is what the time will seem like), that she is going to her first day at kindergarden. Hugs and prayers still coming your way. And thank you for posting ever so often about how Megan is doing. Yes, we all think of her as "ours", but you get the dirty diapers :lol:

AndreaB Contributor

Tanya,

So glad to hear how well Megan is doing.

evie Rookie

Great news about Megan's progress!! So glad things are progressing there and so good you could visit the other grandparents. Glad you have time to post news accasionally. Hugs and prayers from here too. evie

TCA Contributor

Don't worry Karen. I did not take offense at all, just wanted you all to know that I'm watching out for "our" baby. I'm just so glad you are all so concerned about my baby girl! How could I take concern as a personal slam? Love and hugs! :D

  • 2 weeks later...
TCA Contributor

here's the update from caring bridge . go ahead and laugh at me - everyone else is! :P

*************************************************************

Last week was quite a week for Megan. She went to her first birthday party for a friend on Saturday and had a great time. On Monday she had to have a new feeding tube put in. The old one was stopping up. The procedure is very simple, she just has to be put under an X-Ray to make sure the placement is correct. I was helping to hold her down and looked up at the screen after it was over. I saw something very strange and asked what it was. The Radiologist wasn't sure, but after about a second I said, "That's the hairbow we lost on Saturday!!!!!!!" The look on my face had to be sheer terror. My next sentance was, "The child won't eat a cracker, but she swallowed her hairbow?" At this point the Radiologist was laughing at me and assuring me that this happens all the time and most parents never know it. The funny part was he had just finished bragging on how good of a job we do caring for Megan, then we see that she swallowed a hairbow right in front of me without me even suspecting it. I was really feeling like Mother of the Year at that point. : (

He consulted with her GI and they decided to give it a week to see if it would pass. It did the next day, thank God, but I had a sleepless night worrying about it. Apparently her issues with eating are not because she can't swallow!!!!!! It's funny now that it passed but I about went crazy before it did!

She had her 18 mo. checkup on Monday and all is looking much better. Her height is approaching the growth curve and her weight is at 15th percentile now. She was 21 lbs. Her gaining is finally leveling off and she is getting healthier every day. She finished up her vaccinations and got her flu shot. She felt bad yesterday from that, but has been great today.

She is LOVING her walker. It's like she knew she was supposed to be mobile, but wasn't able to and getting very frustrated. She is so much happier now and is amazing me at what she can into it with it. She's pulling things out of cabinets and anything she can reach off of a shelf or table. I'm readjusting to having one in that stage.

She's still trying new foods, but not really eating. I'm sure the eating will follow and I'm just trying to give it time and be patient. God has taught me a lot about patience through all of this! I don't recall asking for the lesson, though. ; )

We hope you all have a Happy Halloween. Megan is going to be a Sunflower and Cole a Robot. They're getting ready for our pumpkin carving contest at church.

Love you all!

Cheri A Contributor

What a great report, Tanya!! I'm so happy for you guys!!

jerseyangel Proficient

Oh Tanya--The hairbow story was wild! I'll bet food won't be far behind now :D

It's so good to hear of her wonderful progress. The children's costumes sound cute--if you get a good picture, would you post it?

nikki-uk Enthusiast

:lol::lol: What a great story!!!!

I can't believe she ate her hairbow (hope it 'passes' ok! :blink: )

VydorScope Proficient

:lol::lol::lol::P:lol::lol:

THATS GREAT !

Keep us updated!

GFBetsy Rookie

Hooray! Even about the hairbow . . . because now you know that she CAN swallow . . . and it's just a question of when she WILL :lol:

And, Vincent, glad to see you post, even just a short one here. I was sorry you felt driven away. :(:(:(

mouse Enthusiast

That is great news Tanya. And I love that she ate a hairbow. Because you now know she can eat also and not just drink liquids. LOL

This is my second post here as the other went somewhere. It is those little gremlins that get into our computers and this one must have been hungry.

Fiddle-Faddle Community Regular

What great news!! Strange choice of fiber, though.... :D

NoGluGirl Contributor
here's the update from caring bridge . go ahead and laugh at me - everyone else is! :P

*************************************************************

Last week was quite a week for Megan. She went to her first birthday party for a friend on Saturday and had a great time. On Monday she had to have a new feeding tube put in. The old one was stopping up. The procedure is very simple, she just has to be put under an X-Ray to make sure the placement is correct. I was helping to hold her down and looked up at the screen after it was over. I saw something very strange and asked what it was. The Radiologist wasn't sure, but after about a second I said, "That's the hairbow we lost on Saturday!!!!!!!" The look on my face had to be sheer terror. My next sentance was, "The child won't eat a cracker, but she swallowed her hairbow?" At this point the Radiologist was laughing at me and assuring me that this happens all the time and most parents never know it. The funny part was he had just finished bragging on how good of a job we do caring for Megan, then we see that she swallowed a hairbow right in front of me without me even suspecting it. I was really feeling like Mother of the Year at that point. : (

He consulted with her GI and they decided to give it a week to see if it would pass. It did the next day, thank God, but I had a sleepless night worrying about it. Apparently her issues with eating are not because she can't swallow!!!!!! It's funny now that it passed but I about went crazy before it did!

She had her 18 mo. checkup on Monday and all is looking much better. Her height is approaching the growth curve and her weight is at 15th percentile now. She was 21 lbs. Her gaining is finally leveling off and she is getting healthier every day. She finished up her vaccinations and got her flu shot. She felt bad yesterday from that, but has been great today.

She is LOVING her walker. It's like she knew she was supposed to be mobile, but wasn't able to and getting very frustrated. She is so much happier now and is amazing me at what she can into it with it. She's pulling things out of cabinets and anything she can reach off of a shelf or table. I'm readjusting to having one in that stage.

She's still trying new foods, but not really eating. I'm sure the eating will follow and I'm just trying to give it time and be patient. God has taught me a lot about patience through all of this! I don't recall asking for the lesson, though. ; )

We hope you all have a Happy Halloween. Megan is going to be a Sunflower and Cole a Robot. They're getting ready for our pumpkin carving contest at church.

Love you all!

Dear TCA,

It is such wonderful news that Meg is doing so well! LOL! I can't believe she swallowed her hairbow! Don't blame yourself. No matter how much you watch them, they will manage to swallow things that are not supposed to be swallowed. That is a baby. Most people have a Gerber baby, I have a Goober baby. He is a 3 year old Yorkshire Terrier named Dart. I watch him like a hawk, but he still manages to swallow plastic, the stuffing from his toys, paper, cardboard...you name it! Oh yeah, he also eats fur that falls out if he sheds, and my hair from when I brush it if I shed. I have really long, thick black hair, and I worry he will get a hairball! He he! I am so happy for you guys! We all are here on the forum! This is so exciting! Keep the updates coming! Oh, and watch those hairbows! :lol:

Sincerely,

NoGluGirl

jerseyangel Proficient

Tanya,

Thanks for the adorable picture of the children dressed up for Halloween! They both look so cute :D Did you all have a nice time yesterday?

TCA Contributor
Tanya,

Thanks for the adorable picture of the children dressed up for Halloween! They both look so cute :D Did you all have a nice time yesterday?

I was hoping you'd like the picture. Cole's going through the stage where he doesn't want his picture taken, so I had to get in it with them! We had a great time, but Meg kept falling asleep. The time change is just too much for my early bird! She was soooo glad to finally get in her bed!

mouse Enthusiast

OH, the kids look so cute. Thank you for sharing. Hugs

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,608
    • Most Online (within 30 mins)
      7,748

    lorrasmama
    Newest Member
    lorrasmama
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • 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.