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

I'm A Wreck...


Jenybeen

Recommended Posts

Jenybeen Rookie

I am so nervous. Isaac has his procedure in the hospital tomorrow. He'll be having an endoscopy and colonoscopy. I have never been put under anesthesia, and I am going to put my 5 year old under tomorrow. I am so uneasy about that. I was crying last night. My hubby said if I this nervous about it, then maybe we shouldn't do it. But it needs to be done, I need to know why he has the problems that he has. If we don't know what's wrong, then we can't fix it. Right? I am also feeling like I want to be in the room when they are doing the procedure, even though I know that's not going to happen. I just don't want to leave him. They said it shouldn't take longer than an hour...but still.

Isaac is home from school today because he is fasting and also has to take magnesium citrate which will "clean him out". He is kind of frustrated that he can't eat, but he's had jello and 7UP and a popsicle, so he isn't starving. His teacher is putting together a packet of the work they are doing today, and we'll pick that up when we pick up his big sister. That should give him something to do to keep his mind off food. Hopefully.

That's all...I am just nervous and needed to vent. Thanks for listening.

Jennifer


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



Celiac.com Sponsor (A8-M):



Judyin Philly Enthusiast

will be thinking of you and your son tomorrow.

let us know how he does, and you too Mom.

judy in philly

dlp252 Apprentice
I am so nervous. Isaac has his procedure in the hospital tomorrow. He'll be having an endoscopy and colonoscopy. I have never been put under anesthesia, and I am going to put my 5 year old under tomorrow. I am so uneasy about that. I was crying last night. My hubby said if I this nervous about it, then maybe we shouldn't do it. But it needs to be done, I need to know why he has the problems that he has. If we don't know what's wrong, then we can't fix it. Right? I am also feeling like I want to be in the room when they are doing the procedure, even though I know that's not going to happen. I just don't want to leave him. They said it shouldn't take longer than an hour...but still.

Isaac is home from school today because he is fasting and also has to take magnesium citrate which will "clean him out". He is kind of frustrated that he can't eat, but he's had jello and 7UP and a popsicle, so he isn't starving. His teacher is putting together a packet of the work they are doing today, and we'll pick that up when we pick up his big sister. That should give him something to do to keep his mind off food. Hopefully.

That's all...I am just nervous and needed to vent. Thanks for listening.

Jennifer

Well, I don't have children, so I can't really say I know how you feel, but I just wanted to offer support, and to say that I DID have both procedures done at the same time...it really wasn't bad at all...the cleaning out process that he's going through now is the worst part! The IV was the next worst. The nurses and doctor were very kind and gentle with me, lol.

happygirl Collaborator

Jenybeen,

Good luck! I know it is hard. Please know that we are thinking about you and your son. Write and let us know how it goes. This process is frustrating, but you are being your son's best advocate and helping him lead a healthy life. Love him lots today....and we'll keep you in our prayers tomorrow!

Laura

jennyj Collaborator

You will be in my prayers. I know how frightening it is when a child has to have tests done. When my children have had tests and surgeries I just prayed alot before hand and took puzzle books or reading with me to TRY to pass time. Just make sure to take care of you too because he needs you strong.

TCA Contributor

I'll be praying for you both. My son has had 3 scopes and my daughter 1. I too was nervous, but they really aren't bad at all. We only had to leave them for the few minutes it took to do the scope and then was right back with them. It's pretty simple and will be over quickly. the worst part for my son was the IV, but that wasn't bad either. good luck!

Nic Collaborator

Hi, just want to offer that my son, 4 at the time, went through both procedures and was fine. They didn't even start the IV until he was completely out. The only discomfort he did have was the gas after the colonoscopy in which case he kept thinking he had to poop. I think he was more tired and frustrated that in any pain. Good luck, let us know how it goes.

Nicole


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

I will keep you and your son in my thoughts.

I remember how difficult it is when it's our little one who has to undergo a procedure. I'm sure everything will go smoothly--I had both done the same day, and felt absolutely fine when I woke up and didn't remember a thing.

Try and relax, he's going to be fine :)

Jenybeen Rookie

We're home! And sooner than we expected, too. Isaac did really well. He screamed when they were placing the IV, but he was fine as soon as it was done. Watching him be put under anesthesia was the most difficult thing I have ever had to watch. First he was yawning, then he started screaming for Zachary (his brother), it was so weird. He was obviously hallucinating. That's when I broke down. I let my hubby hold him after that, because I just couldn't do it and I didn't want Isaac to freak out if he saw me crying. He was almost in a panic as it was. By the time he calmed down and fell asleep, hubby and I were both in tears.

After he was asleep, we went to the waiting room. My mom treated us to breakfast at the little cafe. I couldn't eat, of course, lol. After about an hour and 15 minutes, then came and got me, said he was crying for me. My hubby had to stay in the waiting room. On the way to go see him, the nurse said that he woke up right as they finished the procedure. I could hear him crying from down the hall. It was heartbreaking. He wasn't even fully awake, and was crying "Mommy, mommy" even though I was right there rubbing his hair and shushing him. I cried again. I didn't like seeing him like that all! He said he had to go the bathroom, so they unhooked him from everything and I carried him to the restroom and helped him. After that they gave him a popsicle and some stickers and removed his IV.

His doctor showed me some pictures and said that everything looked ok, except he had swelling in his small intestine. The took biopsies of the small intestine and his colon. We should have the results in 3 days. Isaac doesn't remember much, he just keeps asking me where I was when he woke up. He also keeps asking if I am proud of him because he was brave! So cute...I am. :-)

Whew! What an experience. I hope we never have to do that with any of our other kids. The procedure is a piece of cake, it's getting them there that's the hard part. I'll let you all know what we find out about the biopsies.

Thanks for all the prayers, positive thoughts and support!

Jennifer

lonewolf Collaborator

Glad that it went smoothly and that it's over! Hope you get some answers.

happygirl Collaborator

That is great! Its amazing how well kids hold up and he probably won't remember much about it. Life goes on. Its always us adults that worry!

Happy to hear everything went well. Let us know the results. xoox

AndreaB Contributor

I just saw this Jennifer.

I'm glad to hear that everything worked out for all of you. I can imagine I would have been a crying mess...I cry very easily.

I will be waiting for his results as well.

Yes, he was brave and did good. :)

dlp252 Apprentice

Glad to hear it all went well Jennifer! Hopefully this is it for testing for a while! I do think it's very scarey for the little ones to be in that strange environment, but I love his comment about being brave, that is priceless!!!

wolfie Enthusiast

I am so glad that it went okay! What a brave little boy!

schuyler Apprentice

I'm glad everything went well!

Suzie-GFfamily Apprentice

Hi Jennifer,

Glad to hear that it went well for your child. My daughter had her endoscopy/biopsy on Mon this week, and my son has his procedure next week. So we've got 1 down and 1 to go.

The IV was the worst part for my daughter- I expected that it would be and requested some lidocaine cream to apply to her arm before we went into the hospital on Monday (a tip I read about in Danna Korn's book). But she still got upset about having the IV put in. I just held her and kept telling her what a good job she was doing.

I also asked to have a TV for her to watch while they were inserting the IV- unfortunately, there weren't any TV's available but they got one for her to watch soon afterwards and brought a Clifford video (she's 5 yrs). A recent study found that kids reported less discomfort with medical procedures if they were watching TV.

My daughter was really funny as she came out of the anaesthetic (ketamine)- she kept telling everyone that they had 2 noses. I'm glad it's over and I'll be REALLY relieved once my son's procedure is done too.

Suzie

Nikki2003 Contributor

In july We put my 2 yr old daughter out and it really is the hardest thing. She didn't scream though. It was real sad because righht as she was going under she said in the faintest saddest voicve Mommy. I lost it and broke down. It took a total of about 15-20 seconds before she was out.she looked at me with the mask on and looked fine then the anesthesiologist looked at her and moved her quickly to the laying dowm position and she was out,even though her eyes were still open. I am glad it is over. But now my 7 yr old is most likely going to be doing the same thing probably in nov. Because she tested high for celiac also. Where she had the testing her nor should have been <4 and they were 32.?

Celina

Nicole

alivia

Nikki2003 Contributor

Hear anything back yet?

Jenybeen Rookie
Hear anything back yet?

Thanks for asking...been so busy I forgot to update you all. Well...we don't really have any answers, but this is what we know:

Isaac has chronic inflammation of the stomach and excessive stomach acid so he is being put on Prevacid. The colon biopsy came back ok with the exception of a high level of eosinophils (a type of white blood cell) which signifies allergic reaction, I guess. We think that means he is somehow getting something that he is allergic to in his system. We already know Isaac is severly allergic to milk and peanuts, he has been since he was a baby. I try to eliminate anything with even the tracest amount of milk in it, but maybe I am doing something wrong. And I know he isn't getting any peanuts...he wouldn't be breathing if that were the case.

The intestine biopsy showed no signs of celiac, but the doctor doesn't want to rule it out until the blood tests are back (which as of today, they are NOT and it's been over a week.) He said sometimes they could have gotten a "good" piece of intestine that doesn't show celiac, and there are good areas and bad areas. Something to that effect. The doctor said we haven't ruled out Crohn's Disease yet either, but with the biopsy, it doesn't look like it is Crohn's.

The doctor wants him to start drinking elecare, a milk substitute. He said the rice milk that Isaac has been drinking may have milk protein in it. I don't know how accurate that is though, because you would think it would be labeled on the carton and it says dairy free. Our main focus right now is to increase Isaac's caloric intake and control the stomach inflammation.

I am not satisfied with what we know...something is missing. I don't know what. I hope the blood results give us more of picture of what's going on. I just wish we could "fix" him.

Jennifer

Suzie-GFfamily Apprentice

Jennifer,

It must be difficult with nothing conclusive to go on yet. I hope they help you get the problem sorted out. It's hard knowing that something is wrong with your child but not knowing exactly what the problem is.

My son had his endoscopy/biopsy yesterday...... BIG SIGH of relief!!!!!!!!!!

It all went well. We'll get the pathology report back within about 2 weeks- but both my kids are starting their gluten-free diet right away. They both had very obvious changes that could be seen with the endoscope- in the proximal part of their intestines there was a lot of nodularity (lumpy, bumpy stuff) and pathes of red, inflamed tissue too.

My son was surprised when I told him that his proxmal intestine had at least as much nodularity as his sister's. She has some symptoms and he doesn't.

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. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

    4. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    5. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Son's legs shaking

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

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    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

    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
×
×
  • 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.