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

Prayer Request


Fiddle-Faddle

Recommended Posts

Fiddle-Faddle Community Regular

They tried to take him out of the coma, but he had 24 hours of seizures, so I guess they're going to wait some more. They are still trying to find the right combination of anti-seizure meds.

I found some links on the Internet about casein and seizures, and I know that the stuff they tube-feed is whey-based. I wonder if they could tube-feed him donated mother's milk? There are still some milk-banks around the country, though not many.

But last time I suggested it (several years ago when a dear friend was in a coma, and I was nursing a new-born), the doctors acted as though I were suggesting they use other body fluids. (Sigh...)


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



Celiac.com Sponsor (A8-M):



  • Replies 60
  • Created
  • Last Reply
Ridgewalker Contributor
They tried to take him out of the coma, but he had 24 hours of seizures, so I guess they're going to wait some more. They are still trying to find the right combination of anti-seizure meds.

I found some links on the Internet about casein and seizures, and I know that the stuff they tube-feed is whey-based. I wonder if they could tube-feed him donated mother's milk? There are still some milk-banks around the country, though not many.

But last time I suggested it (several years ago when a dear friend was in a coma, and I was nursing a new-born), the doctors acted as though I were suggesting they use other body fluids. (Sigh...)

:( I just don't get why they should be appalled by that suggestion. Human milk makes a heck of a lot more sense than milk for baby cows. :(

Mtndog Collaborator

Oh man.....i hope they get a clue. I'm praying for him.

Fiddle-Faddle Community Regular

Noah had a very bad night--he became septic. I'm told that that is under control now, but apparently they almost lost him. :blink:

Please, if you have a moment for another prayer on his behalf, he really needs it.

Thanks, everyone.

Ridgewalker Contributor
Noah had a very bad night--he became septic. I'm told that that is under control now, but apparently they almost lost him. :blink:

Please, if you have a moment for another prayer on his behalf, he really needs it.

Thanks, everyone.

Can always spare a moment. Hugs!

Cheri A Contributor

What does septic mean?

Saying a prayer for Noah, his caregivers, and his family and friends.

Fiddle-Faddle Community Regular

More than you probably wanted to know:

Sepsis

From Wikipedia, the free encyclopedia

Sepsis is a serious medical condition characterized by a whole-body inflammatory state caused by infection.

Traditionally the term sepsis has been used interchangeably with septicaemia and septicemia ("blood poisoning").[1] However, these terms are no longer considered synonymous; septicemia is considered a subset of sepsis.[2]

Signs and symptoms

Symptoms of sepsis are often related to the underlying infectious process. When the infection crosses into sepsis, the resulting symptoms are that of systemic inflammatory response syndrome (SIRS): general inflammation, fever, elevated white blood cell count (leukocytosis), and raised heart rate (tachycardia) and breathing rate (tachypnea). Secondary to the above, symptoms also include flu like chills.

The immunological response that causes sepsis is a systemic inflammatory response causing widespread activation of inflammation and coagulation pathways. This may progress to dysfunction of the circulatory system and, even under optimal treatment, may result in the multiple organ dysfunction syndrome and eventually death.

[edit] Epidemiology

In the United States, sepsis is the leading cause of death in non-coronary ICU patients, and the tenth most common cause of death overall according to data from the Centers for Disease Control and Prevention.[3] Sepsis is common and also more dangerous in elderly, immunocompromised, and critically ill patients. It occurs in 1%-2% of all hospitalizations and accounts for as much as 25% of intensive care unit (ICU) bed utilization. It is a major cause of death in intensive care units worldwide, with mortality rates that range from 20% for sepsis to 40% for severe sepsis to >60% for septic shock.

[edit] Definition of sepsis

Sepsis is considered present if infection is highly suspected or proven and two or more of the following systemic inflammatory response syndrome (SIRS) criteria are met:[4]

* Heart rate > 90 beats per minute

* Body temperature < 36 (96.8


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Noah had a very bad night--he became septic. I'm told that that is under control now, but apparently they almost lost him. :blink:

Please, if you have a moment for another prayer on his behalf, he really needs it.

Thanks, everyone.

I am so sorry to hear this. You are all still in my prayers daily.

irish Contributor

I will certainly pray for him and his family. Loretta

little d Enthusiast

My daughter and i will say prayers for his family

donna

  • 1 month later...
Fiddle-Faddle Community Regular

I update this with tears in my eyes. I don't even know what kind of prayers to ask you guys for. I received this yesterday from Noah's dad:

"Thank you for all of your kind words, thoughts, prayers and actions. I know that Noah would truly appreciate all of the support he has been given. Unfortunately, for all of us, his case prognosis does not look very good at all. IF, and now it is a big IF, he is able to come off of the heavy sedation drug, he is still not aware or awake of his surroundings. They believe that he will have severe neurological deficits in terms of motor control and function, as well as cognition. The Noah we all knew and loved is never coming back to us. We are not sure if any version of him will ever return to us either. We continue to be hopeful, yet the reality is becoming all too true. We are now hoping that Noah will declare himself, rather than us having to make an unthinkable decision.

Thanks again for your support. It helps sometimes to write things out, because saying them aloud is too painful."

lonewolf Collaborator

I will pray for their family and the decisions they have to make. My heart breaks for them.

wolfie Enthusiast

I am so sorry. I will pray for Noah and his family.

confused Community Regular

I am so sorry for what they are going threw. I continue praying for noah and the whole family. I cnt even imagine how hard this is on all of them.

paula

Cheri A Contributor

:bawling:

My heart is breaking for Noah and all who love him. Many prayers.

taweavmo3 Enthusiast

I will be praying for this family......I used to work in a pedi ICU, and it is gut wrenching when families have to make the agonizing decision to take their child off life support, especially after such a long fight. I can't even imagine the pain they are in, no parent should ever have to go through that. I'm so sorry to hear he isn't doing well, I will be praying for the family, as well as yours. This must be difficult for your son as well, how is he doing?

AndreaB Contributor

We'll keep the family in our prayers through this difficult time. :(

Lisa Mentor

Peace for Noah and his family.

jerseyangel Proficient

I am so very sorry.

I will continue to remember Noah and his family in my prayers.

Cheri A Contributor

I was thinking about Noah and his family. Saying a prayer for them today, and for all of the medical staff caring for him.

ravenwoodglass Mentor
I update this with tears in my eyes. I don't even know what kind of prayers to ask you guys for. I received this yesterday from Noah's dad:

"Thank you for all of your kind words, thoughts, prayers and actions. I know that Noah would truly appreciate all of the support he has been given. Unfortunately, for all of us, his case prognosis does not look very good at all. IF, and now it is a big IF, he is able to come off of the heavy sedation drug, he is still not aware or awake of his surroundings. They believe that he will have severe neurological deficits in terms of motor control and function, as well as cognition. The Noah we all knew and loved is never coming back to us. We are not sure if any version of him will ever return to us either. We continue to be hopeful, yet the reality is becoming all too true. We are now hoping that Noah will declare himself, rather than us having to make an unthinkable decision.

Thanks again for your support. It helps sometimes to write things out, because saying them aloud is too painful."

I am just seeing this now. I am so sorry things look so bleak. I will continue to pray for Noah and his family. Miracles do sometimes happen. I am praying for one here. When I was 11 and in a coma my family was told the same thing. All we can do is pray and wait.

Fiddle-Faddle Community Regular

I can't bear to write this, but--Noah died earlier today. The funeral will be on Sunday.

If anybody has any advice what I can say to his parents that might actually be comforting, please let me know....

taweavmo3 Enthusiast

I am so,so sorry......poor baby. I can't imagine the agony the family must be in right now. Definately makes you realize how precious life is, we can't take for granted the time we have with our children. Rest in peace Noah.

lonewolf Collaborator
I can't bear to write this, but--Noah died earlier today. The funeral will be on Sunday.

If anybody has any advice what I can say to his parents that might actually be comforting, please let me know....

You hug them, cry with them and say, "I'm so sorry". I don't think that anything could be very comforting at this time. I know that they will appreciate your sympathy and tears. I'm so very sorry for them - I can't imagine losing one of my children and at this time of year too... I have tears for them.

Glutenfreefamily Enthusiast
:( Im so sorry, my prayers are with noah and his family.

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. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.