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What caused my son's diabetes? New mom dealing with guilt!

Discussion in 'Parents of Children with Type 1' started by Jasonsmom, Jul 12, 2015.

  1. Jasonsmom

    Jasonsmom New Member

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    My son is 3 and was diagnosed 1 month ago. My emotions have been all over the place. The hospital told me I didn't do anything to cause my son's diabetes and that I couldn't have prevented it. Then a friend posts an article saying that leaky gut may trigger diabetes for some people. Another article says vaccines can be a trigger. I'm suddenly feeling doubt and guilt. I think back and wonder if he had/has a gluten intolerance or whether I should not have had him vaccinated. My husband and I have always kept pretty healthy foods in the house. We don't have a lot of sweets or soda. I never imagined that innocently buying bread (with gluten) or milk ( with the casein) would cause my child to get a chronic, incurable disease!! When did bread and milk become so lethal? Didn't we all grow up on it? I just need to know how other mothers deal with these awful feelings of guilt and sadness. Some days, I feel strong and confident. Other days, I feel so overwhelmed with depression!
     
  2. Joseph

    Joseph Approved members

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    You didn't do anything to cause diabetes. Doctors do not
    really know... What matters now is that both of you should try your best to care and support him. There will be some hard situations and even then, be positive, whenever wrong thoughts come to your head, get rid of them immediately and focus on how to provide the best for your son.
    It took me some time to realize that my duty in this life is SIMPLY be there for my son regardless how tired I can feel, how much work I have to do or how many promotions I give up to.
    IT IS NOT YOUR FAULT and remember you will always find good and sympathetic people around.
     
  3. Christopher

    Christopher Approved members

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    I was just about to reply but Joseph said it perfectly. Read his post and then read it again.

    I will add this: you will go through a wide range of emotions as you navigate managing this illness and not just about guilt. Anger. Sadness. Frustration. Hopelessness. It is normal but if you feel it is seriously affecting you, seek professional help. Your child will take their cues from you about this disease. And not only that but as a caregiver you need to keep yourself healthy in order to take care of your child. Caregiver burnout is a real thing.
     
    Last edited: Jul 12, 2015
  4. Lori_Gaines

    Lori_Gaines Approved members

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    This!!!!! We are three years in, and it does get better as you adjust to your new normal. And I definitely want to second getting professional help if you feel you are mentally and emotionally overwhelmed.
     
  5. Beach bum

    Beach bum Approved members

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    I'd say drop this so called friend immediately. You, like all of us here, did nothing to cause your child's diabetes. Things will get better and trust me, the good days outnumber the bad!
     
  6. jenm999

    jenm999 Approved members

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    I'm so upset on your behalf, jasonsmom. I too had a leaky gut advocate tell me she had a cookbook that would cure my son - all he needs is bone broth! There's no cause, no cure. Some correlations but vaccinations is not one of them (that I have read, and I read nearly everything about T1 in the news).

    More importantly when you get a diagnosis like this that's the LAST thing anyone needs! Drop her, you don't need that ****. And get help: from us, supportive friends, and a professional if needed.

    The first few months you will feel like you're drowning, and the sleep deprivation doesn't help. Take care of yourself, please.

    Sorry you had to join this crappy club. It does get better.



    *Sad sidenote about Bone Broth Lady (as my real friends call her) - her husband has throat cancer and they refused chemo and instead tried natural remedies. It's gone from a very curable stage I to stage IV. :(
     
  7. liamsmum

    liamsmum Approved members

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    Hi Jasonsmom! ... You are NOT alone. My son was diagnosed just 2 weeks ago. Our first thoughts as Mothers are : How did this happen? Was it something I did wrong?

    I've pretty much spent the last 2 weeks reading anything and everything online, including "what causes diabetes in children". I feared it was because I introduced rice cereal too early, or maybe because I've made juices with tap water, that could have contained Nitrates... I've also had some people imply, he contracted diabetes from "burgers and pizza". A lot of people are ignorant to Type 1, and really should keep their mouth shut. I've come to the realization there was nothing I could have done to prevent this. And why worry anyways, It's not like I can change it. So I am dealing with it.


    Obsessing over your children and regretting every other parenting decision we've made are trademarks of a good Parent.

    Just know, I'm sure every parent on here has felt some quilt in thinking it was their fault. It's what we do! x

    Much love!
     
  8. quiltinmom

    quiltinmom Approved members

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    I think most of us go through feelings like this. You're definitely not alone! Just remember this. Guilt is for when you knowingly did something wrong. So this is not a case for guilt!

    I heard the term "leaky gut" for the first time about a week ago. We've had diabetes in our house for 6 years and it's the first I've heard of it. Maybe it has a connection to some autoimmune diseases, but I'm not sure I buy it for diabetes. If there was an established connection, you'd think we would all be talking about it.

    The cause of diabetes is not clearly understood, and is likely more complicated than just one thing to cause it. There is nothing you could have done to prevent it. You didn't cause it by the foods you gave him. It might just take time to come to terms with it, but just keep reminding yourself,...you did everything you should have.

    Regarding "evil" foods and vaccines.....there are a lot of people who believe things that are simply untrue. It's all over the internet. I'm finding that the internet isn't a very good source for medical information, unless you have a firm diagnosis and are looking for advice or support in managing the disease. Just be careful what you read and what you believe. There are those who will deceive to make a buck, and there those who are genuine, yet hugely misinformed. Not to mention "fad" diets that are rampant right now.

    I also realize that just saying these things doesn't make the feelings you are having disappear. That takes time. Sometimes I have to make a conscious choice to ignore that nagging voice that wants me to believe something was my fault, even when logically I know it wasn't.

    Think of it this way--you may be going through stages of grief, grieving the loss of a son who doesn't have diabetes. At some point it will become just a regular part of your life and you will hardly remember what it was like before diabetes. Give yourself permission to grieve in healthy ways, and just focus on loving and caring for your family. The first few months are the hardest, but you will get through it.

    Good luck! We are all here for you. Feel free to vent or ask questions. :)
     
  9. rgcainmd

    rgcainmd Approved members

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    Welcome to the club, but sorry you have to be here. I just want to echo everything everyone else has said thus far, and add my two cents about whack-job "leaky gut", "bone broth", "vaccinations cause __________________ (fill in the blank)", "natural cure/remedy" people. For whatever reason, these types of people clearly do not understand and/or do not want to believe the scientific method and tend to spread their hokey-pokey "knowledge" and advice like the plague that it is. Like I tell my patients, if these "natural/herbal remedies/cures" actually worked, some enterprising chemist would have already isolated the active component and synthesized it, patented the process, and sold it for mega-bucks to a pharmaceutical company. I'm fond of telling patients that inform me that they don't want to take any "chemicals" and only put "natural" things in their bodies the following: "Strychnine is 'natural'. Would you take that?" And I've seen more than one misinformed and unfortunate case like the one referred to by jenm99 in her *Sad sidenote.

    You did nothing to cause your son's T1D and don't let anyone tell you otherwise! The thing to focus on now is managing you child's T1D the best you can while allowing him to continue being the normal boy that he still is. Hang in there!

    Rose
     
  10. Theo's dad Joe

    Theo's dad Joe Approved members

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    At the Barbara Davis center on our second day long instructional visit they introduced their nutritional research team who's current multi year focus has been on leaky gut syndrome. You are WAY out of the loop on the "scientific method" along that line.
     
  11. njswede

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    This makes my blood boil! I hate woo and pseudoscience with a passion and this is a fine example how it hurts people. First of all, leak gut is a fake condition made up by people trying to sell you books or miracle diets. A large majority of medical professionals think leaky gut is a non-condition and it is not recognized by any reputable medical organization. Maybe they will one day be proven wrong (that's the mantra of the believers) but for now, it's a non-condition.

    As far as I'm concerned, diabetes is caused by bad luck. It's probably a combination of genes and a triggering virus, but since it's nothing anyone of us can control, we may just as well call it bad luck.

    Now, it's OK to feel fear, confusion, anger and despair. We all go through it. But guilt is not an emotion you should need to have. I'm only 6 months into this as well and I know how hard it can be in the beginning. But please, direct your energy towards caring for your son. The good news is that between the love and care you give him and the technology available to us today, it has a great chance to have a long and happy life.

    As for your friend. He or she should be ashamed of themselves for being so insensitive around a person who just had some pretty devastating news. Trying to put guilt on you is insensitive at best and downright disgusting at worst.

    I'm sorry, but this is a huge pet peeve for me.

    Don't blame yourself! Be strong! Direct your energy and love to your son and things will be fine. Well, for the most part. We all have crappy days (and I'm still a noob), but for the most part we are fine.
     
  12. Just Jen

    Just Jen Approved members

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    So sorry you are going through this. It will get better! I'm about 14 months into this journey myself. I would like to second this idea that your child will be observing you to know how to deal with this. As difficult as it might be, even if it means locking yourself in the bathroom for five minutes to cry, keeping a positive outlook in front of your child is the best way to help him deal with this. Four weeks after my daughter was diagnosed, she was to attend a musical drama day camp. She was supposed to be dropped off for three and a half hours each day, fed a snack, and then brought home. Friday meant a day of traveling to perform. She had been looking forward to this as all of her older sisters had grown up with this camp. There was no way I was going to let this disease keep her from that opportunity! My two teens and I took turns sitting at the camp so we could be on call in a moment's notice. We brought our own snacks so we knew the carbs. The directors sent her to us every half hour to do a fingerstick. And she had the time of her life! This disease can take a lot from your son if you let it - but don't let it! There isn't much a type one diabetic can't do. Make their own insulin is about it.

    I also want to echo the call to seek professional help for the gamut of emotions you will be facing. And for now, if you have any friends or family members who try to tell you, in their uninformed ways, what you did or didn't do that you should or shouldn't have done - step away from them for now. In fact, I would even say to stay away from the internet - except for this group - because there is so much misinformation. And yes, there is a lot of info your endocrinologist won't tell you either - though I would argue that they also don't want to overload or overwhelm. Write down your questions, the things that you hear, your emotions. It's the best way to process it all.

    You will get through it. And your son will learn to live with this disease. In fact, he can learn to thrive with your help.
     
  13. sszyszkiewicz

    sszyszkiewicz Approved members

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    Hey sorry about the diagnosis. Everytime someone new appears here it is always reminds us all of our own kids diagnosis, and all of the emotions that come with it.

    Nobody on planet earth knows what causes T1D or what can prevent it.

    Nobody.

    If someone knew what causes it or how to prevent it, you would not be here talking about it and endocrinologists all over the world would be looking for new jobs.

    So the best advice i can give (I am 18 months in and the memories are soooo fresh) is to use that energy and throw yourself into diabetes, meaning learn as much as you can, as fast as you can. Knowledge is power with t1D.

    Also take heart in the fact that the technology that surrounds the management of T1D is improving rapidly. Look into Dexcom CGM. It is something available today that provides a decent near real time estimate of your son's blood sugar number every 5 minutes. It can alarm you if he goes low, or if he goes high. There are people who can see their child's number on their watch when they combine their dexcom with some additional technology.

    There are researchers that are currently perfecting the combination of a pump and a cgm to build automated insulin delivery systems that will work to keep your sons number in a pretty good range without alot of trouble.

    I do not believe the sadness will ever completely disappear, but I also know that it ebbs once you have been at it for a while.

    Just keep swimming.

    So hang in there.
     
  14. njswede

    njswede Approved members

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    Joe, this thread is about a person looking for emotional support. You don't think it would be more tactful if you moved your soapbox to another thread?
     
  15. Jasonsmom

    Jasonsmom New Member

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    I can't thank all of you enough! I read all of your posts very carefully, some of them twice. I DO feel like I'm drowning and I desperately needed people who understand what I'm going through to comfort me and that's exactly what you all did. I AM grieving the loss of my son before diabetes and he is so little and innocent! This morning when my husband And I gave him his Lantus, he shouted "NO MORE!." It breaks my heart. He must wonder when the shots will end! I tell him that he has to have the shots or he will get sick and I've already gotten good at giving them quickly and distracting him afterwards! I will focus on being strong and positive and most especially, happy because I know that if I am happy, he will be too. It still feels surreal, like a dream but everyday, I get a little more confident.

    I would like to hear about when or how your children finally got used to the shots. When did they stop crying or running away? Will Jason someday just sit still without any resistance when it's time for shots? I'm sure he'll never enjoy them but I hope he gets to the point where it doesn't bother him so much. Perhaps someday he'll have a pump or the Omnipod.

    Thanks in advance!
     
  16. Theo's dad Joe

    Theo's dad Joe Approved members

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    Read my whole post. I've amended it, but the soapbox was someone calling modern research a "whack-job". Those sources include 50 some well respected researchers in human physiology.

    What exactly is my soap box anyway?
     
  17. rgcainmd

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    Ditto. I second the above!
     
  18. jenm999

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    Yes, there is speculation and further research being done about leaky gut syndrome but it's by no means established science and nothing that any of us, INCLUDING YOU, were able to predict or avoid. All those articles convince me of is that the researchers are leaving no stone unturned. But to dump a zillion links on the thread of a newly dx mom who is grieving is just rude rude rude. Have some decency.
     
  19. Theo's dad Joe

    Theo's dad Joe Approved members

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    I posted 8 journal articles authored by 30 respected scientists that say that leaky gut is not "Whack-job" and not "fake science" as two people most ignorantly and angrily claimed. The articles don't and can't say that leaky gut causes T1D (though leaky gut IS established science, the details are not established), but people can't just jump on a thread and claim that mainstream science is whack job and fake. I didn't come on this thread to post journal articles, but people can not have the freedom to just plain misinform others in the name of emotional support without being checked. Obviously some people don't like to get caught calling leaky gut "whack-job" and then seeing the term leaky gut used in 8 articles in respected journals. From my point of view it is rude to lie and or make false ignorant statements. I will delete the post with links to journal articles about the mechanisms of leaky gut syndrome. I don't see how they would make someone feel guilty anyway, they discuss some of the possibilities of using the research in T1D therapies down the line. I will just have to block posts from a couple of people because it bothers me to read their profound ignorance. Nobody should feel guilty for their child having a genetically based disease, but you don't have to lie to them or misinform them to tell them that.
     
    Last edited: Jul 13, 2015
  20. CoffeeIsBliss

    CoffeeIsBliss New Member

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    I have a cousin with type I and II diabetes.. You did nothing to cause this condition in your son if you were feeding him balanced diet.. ... this happens..

    I am actually allergic to milk... just found out not too long ago cutting consumption dow .. had been consuming it for 45 yrs.. I have no diabetes.
    I am allergic to wheat.. been eating bread... though now cutting way back... I have no Diabetes..


    Be careful not to fall into the guilt traps that some pandering woo woo crap may try to get you into by making false promises.. and claims and cures like your friend trying to get you to think your child has leaky gut was doing ... Your buying Milk and bread Most would say did not cause your son's diabetes...

    It is hard to face that God /Nature gives some children great health and others not so good health.. but my cousin has been type I diabetic for over 30 yrs now.. he is married with an adopted son.. He is grateful all the time for the extra time in life that medicine has proved him...

    http://www.mayoclinic.org/diseases-conditions/type-1-diabetes-in-children/basics/causes/con-20029197
    http://www.webmd.com/diabetes/guide/type-2-diabetes-in-children
    http://www.diabetesresearch.org/support-for-parents
     

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