Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Sooo Any updates? :huh:


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



Celiac.com Sponsor (A8-M):



  • Replies 882
  • Created
  • Last Reply
NoGluGirl Contributor
NoGluGirl, we started probiotics yesterday, so hopefully that will cover that base. She's only eating elemental formula and breastmilk at this point, despite my best efforts, so I don't think the diet is an issue. We're trying to get her to where everything doesn't come back up, so we're still trying foods. I'll mention this test to her GI next week.

Judy,

I'm not posting as much either now that I'm not pumping as much. Thanks for your kind words. How are You? I think of and pray for you often. So good to see a picture of you. I've got to get one of me out there. We are so blessed that she is gaining so well now. Thanks for caring so much! Hugs!

Dear TCA,

Be careful with fruit! Starches are allowed for children in the diet for Candida, but not the fruit, because it converts to sugar in the gut. The nystatin and probiotics may be all it takes. Of course, the doc will have to determine that. Certain foods have molds in them that increase the misery. If you still have it, avoid fermented foods of any kind, dairy, peanuts, pistacchios, dried fruit, fruit juice, processed tomato products, and leftovers more than a day old. The breast milk could make her sick if it contains these things and the baby has Candida. Good luck!

Sincerely,

NoGluGirl :D

TCA Contributor

Here's the latest update on caring bridge:

Well, Megan had a big day yesterday. The surgeon said the healing looked great and released her. The GI was very pleased with her weight gain and actually cut her back on her intake of formula, so she can now be disconnected from the tube 8 hrs a day!!! She was at the 50th percentile for weight to hieght and about 20th for weight alone. She's still not on the chart for height, but look at her Mama! The cardiologist did an ultrasound and said the shunt repair was the best he had ever seen and that the contegra valve is fuctioning perfectly (praise God)! Her heart function was described as "superb". All of this was great news, but her pulmonary arteries are still narrowing. They could leave things as they are, but the extra pressure this puts on her heart could destroy the valve. So, he wants to do another heart cath in the next couple months and dialate the arteries. If that doesn't work, she may need a stent put in to hold the artery open. These stents are adjustable in size and can be enlarged as she grows via another heart cath. This will only require an overnight hospital stay. The plan is that after this she won't need another cath for years, though. All the doctors were thrilled at how interactive she is and how far she has come since surgery. She's just a different child. She charmed them all with her smile and wave.

Some of the best news is that we can start to get out more now!!!! The three of us went to PF Chang's last night to celebrate. Megan's first restaurant visit went great, with her smiling and waving to everyone around. She was amazed at all the people and loved the attention. We still need to avoid people who are sick and everyone has to wash their hands before holding her, but we're so excited to be able to get out some! I know all her great aunts and cousins and other friends and family can't wait to see her.

Thank you again for the prayers that have brought Megan this far so successfully. We know they will carry her through this next procedure and hopefully things will hold steady for a while. She's just so happy and feels so much better. We are so blessed and praise God for what He's doing in her life.

Love to all - Jarod, Tanya, Cole, and Megan Hope

VydorScope Proficient

GREAT NEWS!!!

Hows the gagging?

TCA Contributor
Dear TCA,

Be careful with fruit! Starches are allowed for children in the diet for Candida, but not the fruit, because it converts to sugar in the gut. The nystatin and probiotics may be all it takes. Of course, the doc will have to determine that. Certain foods have molds in them that increase the misery. If you still have it, avoid fermented foods of any kind, dairy, peanuts, pistacchios, dried fruit, fruit juice, processed tomato products, and leftovers more than a day old. The breast milk could make her sick if it contains these things and the baby has Candida. Good luck!

Sincerely,

NoGluGirl :D

Thanks for that list. I talked to the GI a lot about continuing pumping yesterday and he made a lot of good points. AT this point she is THRIVING on the formula and he doesn't want to do anything to stop the progress we've seen. He isn't opposed to her getting breast milk, but wants to be very careful for the very reason that you mention, what I eat, she gets. I've eliminated so many things and some have helped, but others we saw no change in and it's hard to figure out what's causing what. He said that many studies have been done on immunilogical issues and that babies depend on the breast milk for their antibodies, but after that start depending on their own immune systems to kick in, it's just the way thier bodies are designed. Meg's now 17 mos, so he's doesn't think it would be much benefit to continue through the winter. She's starting the feeding clinic next week and we're hoping she will start eating soon. He was very diplomatic, obviously being aware of the emotional issues involved too. He had rather us start her on solids to test out what she's allergic to now that she's doing so well. I think I'm going to stop pumping since all of those points make such good sense, plus I have ton in the freezer by now. It's hard to know for sure, but she doesn't seem to need it now and Lord knows I need the time. sorry for the long explaination, I guess I'm just working through all of it as I type.

GREAT NEWS!!!

Hows the gagging?

Thanks!! The gagging has improved a little She only gagged one time during the night last night and it was when it was almost time for her Reglan, which helps to supress it. It's still not great, but I do see slight improvement. Hopefully that will continue!!!

VydorScope Proficient

She eating any food yet, or is it still all via the tube?

AndreaB Contributor

Tanya,

Everything sounds good, including the decision to stop pumping.

Thank you for the updates.....I always read, just don't always post. :)


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Tanya--

Thanks for the wonderful news about Megan! She is doing so well, I was just smiling as I read your post :) I know that the gagging will reduce with time--such an improvement already!

My best to the whole family :D

NoGluGirl Contributor
Thanks for that list. I talked to the GI a lot about continuing pumping yesterday and he made a lot of good points. AT this point she is THRIVING on the formula and he doesn't want to do anything to stop the progress we've seen. He isn't opposed to her getting breast milk, but wants to be very careful for the very reason that you mention, what I eat, she gets. I've eliminated so many things and some have helped, but others we saw no change in and it's hard to figure out what's causing what. He said that many studies have been done on immunilogical issues and that babies depend on the breast milk for their antibodies, but after that start depending on their own immune systems to kick in, it's just the way thier bodies are designed. Meg's now 17 mos, so he's doesn't think it would be much benefit to continue through the winter. She's starting the feeding clinic next week and we're hoping she will start eating soon. He was very diplomatic, obviously being aware of the emotional issues involved too. He had rather us start her on solids to test out what she's allergic to now that she's doing so well. I think I'm going to stop pumping since all of those points make such good sense, plus I have ton in the freezer by now. It's hard to know for sure, but she doesn't seem to need it now and Lord knows I need the time. sorry for the long explaination, I guess I'm just working through all of it as I type.

Thanks!! The gagging has improved a little She only gagged one time during the night last night and it was when it was almost time for her Reglan, which helps to supress it. It's still not great, but I do see slight improvement. Hopefully that will continue!!!

Dear TCA,

It is such wonderful news about Meg! Her improvement is so exciting! We are pulling for her! She is sort of our baby too! Babies systems are quite different. They are still developing. If you need any more info on Candida, I would not mind providing any you need. If you are concerned about her catching viruses in the winter, if she is not allergic to corn, you could give her Sambucol. It is a black elderberry extract that boosts immunity up to 300 percent! I take it during cold and flu season. It dramatically reduces the time you spend sick, if you do happen to contract a virus. Keep the updates coming!

Sincerely,

NoGluGirl :P

Fiddle-Faddle Community Regular

Wonderful news, Tanya--you and Megan are both amazing!

Would boosting the immune system be a BAD idea for a celiac? Our immune systems are already TOO good, aren't they?

nikki-uk Enthusiast

Wonderful news!Onwards and upwards! :):)

NoGluGirl Contributor
Wonderful news, Tanya--you and Megan are both amazing!

Would boosting the immune system be a BAD idea for a celiac? Our immune systems are already TOO good, aren't they?

Dear Fiddle-Faddle,

Usually, Celiacs and gluten intolerant individuals have weaker immune systems. Celiacs produce antibodies as a result of an autoimmune response. Leaky-gut syndrome is a typical precursor to food allergies and sensitivities. These proteins leak into the system, then antibodies begin to develop. Every time that protein is consumed, the immune system attacks the body. Candida is responsible for that frequently. It is almost unheard of that someone suffering with a yeast overgrowth does not have a food allergy or sensitivity to something. This is according to the research, anyway. I hope this makes sense.

Sincerely,

NoGluGirl B)

VydorScope Proficient

Its been 8 days... no updates :( :(

TCA Contributor

I had JUST posted to her caring bridge site and was getting on here to copy it in! Sorry to keep you waiting! Megan has just come alive since surgery, which is great, but I have a fraction of the time on here that I once had! I miss you guys!

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

THURSDAY, SEPTEMBER 14, 2006 08:25 PM, CDT

Just wanted to give another Megan update. She weighed in today at 19-11. The pediatrician is glad to see her weight gain taper off some. If she doesn't gain any in the next few weeks, we'll increase the feeds, but for now it's good to not gain any! Hard to believe, isn't it?

I took Cole and Megan to the library this morning for a reading hour. They LOVED it! They both danced (Megan sitting, of course) and loved the stories. It's so nice to be able to get out some now.

We were able to schedule Megan's heart cath this week for Nov. 10. This is when they will try to stretch her pulmonary artery with the balloon and then place a stent if the stretching isn't successful. Jarod has already checked and his new job is willing to work with him to let him off. He starts Monday, so pray for him and us during the transition.

Just last night I was thinking her gagging is really improving, but she had a really bad day of it today. Overall, I do think it's starting to improve. The feeding therapy was cancelled this week because of the speech therapist being sick. She'll start on Monday and hopefully we'll see big strides there. Meg did take a couple tiny sips of juice this week, but that's all we've been able to get down her. At least that's some improvement. She started physical thereapy back today and was NOT happy about it. Hopefully Ms. Rhonda will have her up and walking soon!

We hope you all have a great weekend!

Love - Jarod, Tanya, Cole and Megan Hope

VydorScope Proficient

How about you? How you doing?

AndreaB Contributor

Thanks Tanya.

I hope you are taking care of yourself too.

It is exciting to hear of you being able to take the kid out. :)

Judyin Philly Enthusiast

WONDERFUL NEWS tANYA.

GLAD YOU COULD GET OUT AND INTO THE 'NORNAL ' WORLD AGAIN.

YES, HOW ARE YOU DOING.

WILL KEEP YOU IN MY PRAYERS AS JAROD STARTS HIS NEW JOB.

LOVE

JUDY

TCA Contributor

Thanks guys! I'm doing really good. I'm a little stressed with Jarod starting the new job, but they seem to be a good company about putting family first. I hope we don't have any issues with them. I just wish Jarod was going to have more time off before he started, but they need him too bad at the old job. I'm sure it will all work out.

I know it's probably TMI, but we share sooo much on here. this past week has been the first time in over 4.5 years since I haven't been either pregnant or breastfeeding or both. As selfish as it might sound, it's been kinda nice. I think I needed the break and didn't realize it.

The bad thing about not pumping is I don't get much computer time these days. Trust me, I may not be here as much, but I haven't forgotten you guys! Just PM me if anything big happens to make sure I don't miss out!!! It's hard to wade through all the messages!

NoGluGirl Contributor
Thanks guys! I'm doing really good. I'm a little stressed with Jarod starting the new job, but they seem to be a good company about putting family first. I hope we don't have any issues with them. I just wish Jarod was going to have more time off before he started, but they need him too bad at the old job. I'm sure it will all work out.

I know it's probably TMI, but we share sooo much on here. this past week has been the first time in over 4.5 years since I haven't been either pregnant or breastfeeding or both. As selfish as it might sound, it's been kinda nice. I think I needed the break and didn't realize it.

The bad thing about not pumping is I don't get much computer time these days. Trust me, I may not be here as much, but I haven't forgotten you guys! Just PM me if anything big happens to make sure I don't miss out!!! It's hard to wade through all the messages!

Dear TCA,

I am so glad to hear things are going better! We are all pulling for you guys! I still wonder about the Candida issue with Megan. All those antibiotics can really damage your body! I know there is a stool test to diagnose it. Doctor's data is who my doctor goes with, but Enterolab does it, too. It is really a parasitology test. Keep posting!

Sincerely,

NoGluGirl B)

TCA Contributor
Dear TCA,

I am so glad to hear things are going better! We are all pulling for you guys! I still wonder about the Candida issue with Megan. All those antibiotics can really damage your body! I know there is a stool test to diagnose it. Doctor's data is who my doctor goes with, but Enterolab does it, too. It is really a parasitology test. Keep posting!

Sincerely,

NoGluGirl B)

I'll mention this to her GI. She's still on probiotics, though. Thanks for the info.

TCA Contributor

just posted this to caring bridge. Hope all of you are doing well!

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

Megan started feeding therapy at Huntsville Hopsital on Monday. I really like the therapist there and her approach to things. She doesn't want us to force things on Megan, but was glad to hear that we include her at mealtime and let her play with food. All these things give her positive reiforcement for eating. She taught me some exercises and massages to do on her cheeks and gums. Her muscles are not developing properly due to her not eating and these will help to loosen them up. We go back next Monday for another hour session. The gagging still hasn't improved, but we're really praying for progress.

Megan weighed in at 20 punds this week! She's not slowing down much and she's off the pump for 8 hours a day now. It's so nice to be able to get her out without toting the pump around with us. She also saw the cardiologist in Hville and he took her off of Lasix completely. She's only on 2 heart meds now, one of which is asprin (she'll be on that for life with the conduit). The second, digoxin, will be discontinued after her cath in Nov.

We've been working with her in the stander contraption the physical therapist brought for her. She's cooperating more, especially if you take her outside in it. She loves to be outside and we are a lot now that the weather has been so wonderfully cool.

I hope all of you have a great weekend and I'll report in next week on how her progress is going.

Love you all!

jerseyangel Proficient

Thanks for the update, Tanya :) Continued good wishes to all of you!

nikki-uk Enthusiast
Thanks for the update, Tanya :) Continued good wishes to all of you!

Ditto!! :):)

NoGluGirl Contributor
just posted this to caring bridge. Hope all of you are doing well!

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

Megan started feeding therapy at Huntsville Hopsital on Monday. I really like the therapist there and her approach to things. She doesn't want us to force things on Megan, but was glad to hear that we include her at mealtime and let her play with food. All these things give her positive reiforcement for eating. She taught me some exercises and massages to do on her cheeks and gums. Her muscles are not developing properly due to her not eating and these will help to loosen them up. We go back next Monday for another hour session. The gagging still hasn't improved, but we're really praying for progress.

Megan weighed in at 20 punds this week! She's not slowing down much and she's off the pump for 8 hours a day now. It's so nice to be able to get her out without toting the pump around with us. She also saw the cardiologist in Hville and he took her off of Lasix completely. She's only on 2 heart meds now, one of which is asprin (she'll be on that for life with the conduit). The second, digoxin, will be discontinued after her cath in Nov.

We've been working with her in the stander contraption the physical therapist brought for her. She's cooperating more, especially if you take her outside in it. She loves to be outside and we are a lot now that the weather has been so wonderfully cool.

I hope all of you have a great weekend and I'll report in next week on how her progress is going.

Love you all!

Dear TCA,

This is so exciting! Hopefully some testing will help identify the trouble with the gagging. Poor kid. It is good she weighs more. We appreciate the update, and are pulling for you!

Sincerely,

NoGluGirl :P

mouse Enthusiast

I am so glad that you are steadily moving forward. I always keep you all in my prayers and I thank you for always keeping us informed. Many Hugs.

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. - plumbago replied to plumbago's topic in Related Issues & Disorders
      7

      Anyone else with very high HDL?

    2. - trents replied to plumbago's topic in Related Issues & Disorders
      7

      Anyone else with very high HDL?

    3. - knitty kitty replied to plumbago's topic in Related Issues & Disorders
      7

      Anyone else with very high HDL?

    4. - trents replied to Tyoung's topic in Related Issues & Disorders
      1

      Celiac Disease and Mild Chronic Gastritis

    5. - Tyoung posted a topic in Related Issues & Disorders
      1

      Celiac Disease and Mild Chronic Gastritis


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,905
    • Most Online (within 30 mins)
      7,748

    Bonnie Whildin
    Newest Member
    Bonnie Whildin
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I have taken thiamine on and off (just not at this exact moment), and I’m not sure it's made any difference. Yes, I almost always “fast” (12 hours NPO) for blood tests, as do a great many other Americans, so I tend to think that’s not it. All I can say is that the mystery continues. I could do some speculating here…well, heck, let me go ahead and speculate now: The lab ranges we all see on our reports are more or less the averages of Americans who have had those blood tests. Now, it’s up to you and me whether or not to think of the average American as healthy. I can make arguments both ways, more often than not, on the negative. My point here is that maybe the current range of HDL is somewhat skewed (ie, low), and maybe just maybe my super high (plus 100s) HDL results are not something to worry about; the range just needs updating. Why do I say this? Because pre-celiac disease diagnosis, my HDL values were in the normal range, but post celiac disease diagnosis, my HDL levels are way above average. See where I’m going? My trusty guidebook on celiac disease, Recognizing Celiac Disease by Cleo Libonati, RN, BSN, says that HDL increases after being on the gluten free diet. Or can increase, I guess. Then again, it could be something else. ¯\_(ツ)_/¯ In thinking of going to a cardiologist, I sort of fear that he/she will be dismissive of a link to celiac disease, treated celiac disease, and would not therefore be considering all possibilities. @trents I'm sorry you've been diligently working on your numbers to no effect. That must be frustrating. LDL is a world that is far better understood than HDL, so for you there's maybe less "mystery." Familial hypercholesterolemia is for sure something that can be tested. Outside of that, you're right, genetics can determine a general pattern.
    • trents
      Well, I have the opposite problem. My LDL has been moderately high for years. I eat healthy and exercise regularly but can't seem to move that meter. I used to be on a statin (and my doctors want me to go back on one) and it brought both HDL and LDL down but the ratios never changed. I think a lot of that cholesterol stuff is just baked into the genes.
    • knitty kitty
      Wow, @plumbago, Curiouser, and curioser... Have you been fasting?  Apparently HDL levels increase after fasting... https://ajcn.nutrition.org/article/S0002-9165(23)31185-7/abstract   I must say it, try taking some Thiamine.  Thiamine helps regulate lipoproteins... Thiamine helped lower HDL in this study whether they had diabetes or not. https://pmc.ncbi.nlm.nih.gov/articles/PMC3921172/#:~:text=Serum thiamine and its derivatives,supplementation (p %3D 0.009).
    • trents
      Welcome to the forum, @Tyoung! I would assume for the time being that the mild gastritis and the celiac disease are connected and that once you get a good handle on gluten free eating and experience significant healing in the lining of your duodenum, you will also see improvement in the gastritis as well. Gastritis is more often than not an accompanying finding that is commented on in the post scope/biopsy notes when people are positive for celiac disease. 
    • Tyoung
      Hello! I was recently diagnosed with celiacs and mild chronic gastritis was noted on my EGD as well. My GI did not even bring up the gastritis and when I asked she brushed it off. I really want to heal my gut completely not just from celiacs but also the gastritis. Did anyone else have this at diagnosis? Were you able to treat it? Was it associated with celiacs or something entirely different? Thank you!!
×
×
  • Create New...