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. - Iam replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - trents replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over

    3. - bobadigilatis replied to Larzipan's topic in Related Issues & Disorders
      33

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      6

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,300
    • Most Online (within 30 mins)
      7,748

    Philbin
    Newest Member
    Philbin
    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

    • Iam
      Yes.  I have had the tmj condition for 40 years. My only help was strictly following celiac and also eliminating soy.  Numerous dental visits and several professionally made bite plates  did very little to help with symptoms
    • trents
      Cristiana makes a good point and it's something I've pointed out at different times on the forum. Not all of our ailments as those with celiac disease are necessarily tied to it. Sometimes we need to look outside the celiac box and remember we are mortal humans just like those without celiac disease.
    • bobadigilatis
      Also suffer badly with gluten and TMJD, cutting out gluten has been a game changer, seems to be micro amounts, much less than 20ppm.  Anyone else have issues with other food stuffs? Soy (tofu) and/or milk maybe causing TMJD flare-ups, any suggestions or ideas? --- I'm beginning to think it maybe crops that are grown or cured with glyphosphate. Oats, wheat, barley, soy, lentils, peas, chickpeas, rice, and buckwheat, almonds, apples, cherries, apricots, grapes, avocados, spinach, and pistachios.   
    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
×
×
  • 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.