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
Canadian Karen
Posted

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
Fiddle-Faddle
Posted

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
nikki-uk
Posted

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
TCA
Posted
  • Author

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
VydorScope
Posted
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
Judyin Philly
Posted

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
Canadian Karen
Posted

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
Judyin Philly
Posted

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
Canadian Karen
Posted

That's okay, Judy :D

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

Hugs as always!

Karen

mouse Enthusiast
mouse
Posted

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
AndreaB
Posted

Tanya,

So glad to hear how well Megan is doing.

evie Rookie
evie
Posted

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
TCA
Posted
  • Author

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
TCA
Posted
  • Author

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
Cheri A
Posted

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

jerseyangel Proficient
jerseyangel
Posted

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
nikki-uk
Posted

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

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

VydorScope Proficient
VydorScope
Posted

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

THATS GREAT !

Keep us updated!

GFBetsy Rookie
GFBetsy
Posted

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
mouse
Posted

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
Fiddle-Faddle
Posted

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

NoGluGirl Contributor
NoGluGirl
Posted
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
jerseyangel
Posted

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
TCA
Posted
  • Author
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
mouse
Posted

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

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,050
    • Most Online (within 30 mins)
      7,748
    Rima
    Newest Member
    Rima
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • tiffanygosci
      Celiac support is hard to find

      By tiffanygosci · Posted

      Hi Cristiana! It's so nice to meet you! Thank you for the kind reply I am glad I live in a time where you can connect with others through the Internet. That is a mercy I am grateful for.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
×
×
  • 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.