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

Cheri A Contributor

I'm so happy to read the last couple of updates! Fever going in the right direction and smiles!!

I agree that this community is so great! I love to come here and read!


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



Celiac.com Sponsor (A8-M):



  • Replies 882
  • Created
  • Last Reply
Judyin Philly Enthusiast

Motrin + Smiles = GOOD NEWS...!

JUST DID A LONG PRAYER...GOSH IT TAKES ALOT TO FIGHT THAT 104 FEVER SO NO WONDER THERE ARE FEW SMILES...

PATTI...THANKS..FOR THE :lol: FIRST THING THIS AM.

HI ARMETTA SAW YOU WERE ON THIS THREAD.

LET ME KNOW WHEN YOUR UP TO A PHONE CALL KNOW HOW TIRED YOU'VE BEEN BUT WITH THE PT ETC I HAVEN'T HAD ALOT OF TIME FOR COMPUTER SO PHONE IS FASTER..ONLY IF YOUR UP TO IT

JUDY

key Contributor

Glad Megan is more alert and the Motrin is working. I love that stuff! Praying for her continued recovery.

My oldest had major surgery on his head at 21 months old and I was very upset through that. It was the hardest thing I have ever been through, so my heart goes out to you Tanya, as her mother.

HUGS,

Monica

VydorScope Proficient

MEGAN UPDATE

FRIDAY, JULY 28, 2006 11:43 AM, CDT

Megan's night was pretty good, but her fever is still a major issue. She's still staying around 99 as a minimum and creeping back up often. At this point the doctors don't think this could be a reaction from the bypass machine since she's so far out from surgery. They are starting to test for rejection of the bovine contegra (the cow's vein they used to replace the shunt and valve). This is not good if she is rejecting it and would mean another surgery to replace it. This is not something that usually happens, but the doctors know Megan well and said that if anyone would, she could. They are doing a Tcell count to see if it's elevated for the first step. Another possible thought was a beef allergy. My heart sank with this thought. She hasn't been tested for beef since I don't eat much, so we just don't know yet. The contegra is supposed to be neutralized enough so that it can't cause a reaction, but, again, this is Megan we're talking about, so they're looking at all the possibilities. I'll update as soon as we know something. Please keep praying for this all to resolve. I'm not sure what to pray specifically, so I pray for God in His wisdom to make her better.

Her oxygen saturations have been a little low too, so she's being given more oxygen, but her blood pressure seems to be a little better.

On a bright note, she is smiling more this morning and even sat up and played with her toys for a few minutes and laughed. She looks great clinically too.

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

AndreaB Contributor

Great news about her smiles. Not so good news about possible problems with beef. We'll continue to ask to God to direct the doctors in her care.

Judyin Philly Enthusiast

"I'm not sure what to pray specifically, so I pray for God in His wisdom to make her better."

That's what I'll pray for then..and add strength for you all

love

judy in philly

nikki-uk Enthusiast

Hoping this will turn out to be a minor hiccup.

If it's any consolation to you my son had a temp as high as Megans for a week after heart surgery.

His core temp was way too high whilst periphally his temp was too low.

The docs did a myriad of tests and cultures and never actually found out why-it just seemed to right itself.

Still rooting for you!!


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator
Vincent, you make me smile. Aren't you forgetting that it's politically correct to trash Christians, it's just every other group you cannot trash??? ;) I homeschooled for ten years till I couldn't handle it anymore, not from an academic standpoint, but from a health standpoint. Now that I'm healthy, they don't want to leave their friends and my husband doesn't want me under the stress. It's a wonderful thing though, and I have fond memories of homeschooling. People would say, "What about socialization?" I'd say, "You can't be serious, there are 8 of us who live in this house!!! Plus, with all the homeschool activities, we get way too much socialization!" Of course, you may be talking about a private school.

Anyway, all states have exemptions to vaccines. In some states, like Ohio, we take a philosophical exemption. In other states, like Indiana, we took the religious exemption, which is available in all states. For the religious exemption, they might ask for a letter from your pastor, but they are not allowed to do that, so tell them that the letter is not necessary because it's your personal religious belief not necessarily the belief of your church.

If you want to just skip this one vaccine, then I'd still take the exemption for all of them. Just seems easier.

Prayers on still...

DingoGirl Enthusiast

Yes, still praying for the little one.....and for you....strength, wisdom, guidance and grace. :)

dlp252 Apprentice

Still praying as well!

Canadian Karen Community Regular

Prayers from up here too!

Hugs and kisses to baby Megan (and family too!)

Karen

schuyler Apprentice

Still praying

covsooze Enthusiast

Praying here too. Much love to the whole family.

Susie x

jerseyangel Proficient

Still praying and keeping positive thoughts :)

lonewolf Collaborator

I'm still praying for little Megan too. And the whole family.

mouse Enthusiast

Still praying for good health for Megan and for this to beresolved without other surgery. God Bless.

jaten Enthusiast

God bless.

evie Rookie

God bless Megan and her whole family. evie

AndreaB Contributor

MEGAN UPDATE

FRIDAY, JULY 28, 2006 06:22 PM, CDT

Megan had a really good day. The fever is still spiking for no apparent reason, but her bloodwork still didn't show any sign of infection. She even sat up in bed and played with toys a few times today.

Dr. Drinkwater, her surgeon, came by tonight and helped to settle our fears about the fevers. He thinks it is a rejection of sorts causing the fevers, but thinks she will adjust to it in a few days. He said it's more of an allergic reaction than a true rejection. She looks so good otherwise, he is not concerned that it will be anything that would precipitate needing another surgery - Thank God!!!!

The Tcell count they did won't be back until tomorrow. That should give us a better indication of whether or not rejection is the issue. Dr. Drinkwater said that as long as infection is not present, though, she should build up antibodies to be able to tolerate it. Pray that he's right.

She looks sooo much better. We also were told that we will have to continue to keep Megan in for about 6 weeks after surgery because of risk of infection, but should be able to be out more after that. We'll still have to be very careful through cold and flu season, but not as bad as last year.

Thanks for all the prayers today. God is still hearing and responding! He has big plans for Megan, plans for a future and a hope....

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

jerseyangel Proficient

Thank goodness for this wonderful news from Tanya!

VydorScope Proficient

Tanya called, but I was unalbe to get the phone and mised it. She left a message and sounds like theres realy no new information on Megan... how ever there is some sad news :(

Remember that mother she mentioned that was there 52 days alone? I was trying to get her name/etc and well Tanya called to tell us that other baby did not make it. :(

Is 9:20pm here now so I dont want to call Tanya, the kids are hopefully asleep and I would hate to wake them, I will call her tommorow though....

AndreaB Contributor

Oh Vincent, that's so sad. That poor woman, to be there all alone and now this. :(

VydorScope Proficient
Oh Vincent, that's so sad. That poor woman, to be there all alone and now this. :(

Tanya did say at the very end the grandparents did show...sure that helps a little.

Fiddle-Faddle Community Regular

I'm very relieved for Megan, but, oh, how sad for the other mom. :( (We need a crying smiley...)

The night after Michael's open-heart surgery, an eight-year-old boy who had been hit by a car while riding his bicycle was Life-flighted to Children's hospital. He didn't make it through the night. I will never ever forget his mother's face as she walked out of the PICU with her priest. I think of her every time Michael has a birthday, or on the date of his heart surgery, or at times like when he received his black belt in Tae Kwon Do. And she'll never know how often I do think of her; we never met.

When things go well, everybody says, "God heard our prayers," or "God is good," or "God guided the surgeons." But this poor mommy's experience kind of puts it in another light, doesn't it? I mean, we can't say to her, "God didn't hear your prayers," or "God is bad," or "God didn't guide YOUR surgeons."

We can hope, we can pray (and the power of prayer is well-documented!), we can believe--but the truth is, we mere mortals can't really presume to know what God does or doesn't do, and for us to say, "God is good," only when things are going the way we want--I don't know, at least for me, it makes hearing sad news like this all the more upsetting. I imagine the mommy of the baby who didn't make it hearing others congratulate the mother of a baby who did with, "God heard our prayers," and I can't even begin to imagine the heartbreak she must have.

I'm not trying to start a religious argument here. I'm just thinking out loud (well, as loud as you can on a computer)...

I'm still hoping and praying for good health for Megan, and for peace (if that's possible) for the mother of the baby who didn''t make it.

flagbabyds Collaborator

I am praying for Megan all the time,

my friend was killed while i was at camp and it is horrible but megan has loving parents and everyone who cares for her and she sounds like an amazing little girl.

Its good that she is smiling and getting better i hope that she keeps getting better every day!

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Basic metabolic panel results - more flags

    2. - trents replied to xxnonamexx's topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy

    3. - Rejoicephd posted a topic in Related Issues & Disorders
      1

      Basic metabolic panel results - more flags

    4. - xxnonamexx posted a topic in Related Issues & Disorders
      1

      Self Diagnosed avoiding gluten 7 months later (Not tested due to eating gluten to test) update and question on soy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,319
    • Most Online (within 30 mins)
      7,748

    Mamadook07
    Newest Member
    Mamadook07
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
      I know I haven't been tested but self diagnosed that by avoiding gluten the past 7 months I feel so much better. I have followed how to eat and avoid gluten and have been good about hidden gluten in products, how to prep gluten-free and flours to use to bake gluten-free and have been very successful. It has been a learning curve but once you get the hang of it and more aware you realize how many places are gluten-free and contamination free practices etc. One thing I have read is how soy is like gluten. How would one know if soy affects you? I have eaten gluten free hershey reeses that say gluten free etc some other snacks say gluten free but contain soy and I dont get sick or soy yogurt no issues. Is there adifference in soys?
    • knitty kitty
      Check your multivitamin to see if it contains Thiamine Mononitrate, which is a "shelf-stable" form of thiamine that doesn't break down with exposure to light, heat, and time sitting on a shelf waiting to be sold.  Our bodies have difficulty absorbing and utilizing it.  Only 30% is absorbed and less can be utilized.   There's some question as to how well multivitamins dissolve in the digestive tract.  You can test this at home.  YouTube has instructional videos.   Talk to your nutritionist about adding a B Complex.  The B vitamins are water soluble, so any excess is easily excreted if not needed.  Consider adding additional Thiamine in the forms Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) or thiamine hydrochloride.   Thiamine is needed to help control electrolytes.  Without sufficient thiamine, the kidneys loose electrolytes easily resulting in low sodium and chloride.   We need extra thiamine when we're emotionally stressed, physically ill, and when we exercise regularly, are an athlete, or do physical labor outdoors, and in hot weather.  Your return to activities and athletics may have depleted your thiamine and other B vitamins to a point symptoms are appearing.   The deficiency symptoms of B vitamins overlap, and can be pretty vague, or easily written off as due to something else like being tired after a busy day.  The symptoms you listed are the same as early B vitamin deficiency symptoms, especially Thiamine.  Thiamine deficiency symptoms can appear in as little as three days.  I recognize the symptoms as those I had when I was deficient.  It can get much worse. "My symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell." I took a B 50 Complex twice a day and extra thiamine in the forms Benfotiamine and TTFD.  I currently take the Ex Plus supplement used in this study which shows B vitamins, especially Thiamine B 1, Riboflavin B2, Pyridoxine B 6, and B12 Cobalamine are very helpful.   A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://pmc.ncbi.nlm.nih.gov/articles/PMC10542023/
×
×
  • 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.