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PTSD and Type 1 dx

Discussion in 'Parents of Children with Type 1' started by lrvesquire, May 8, 2009.

  1. lrvesquire

    lrvesquire Approved members

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    Anyone out there suffering from or suffered from PTSD from a diagnosis? Any thoughts suggestions or advice on getting over or managing the anxiety that is so there with a young one (3.5 years old) and managing his care? Looking for advice, links, books, etc and just general support. There is not support group that I can find here where I live so I would love to find some on line.:D
     
  2. Reese'sMom

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    I suffer/suffered from PTSD from Reese's cancer dx and chemo. The type-1 dx came 7 months after the end of chemo, so maybe I just have it from the whole darned year. Anyway, I am doing much better now but I did go on Lexapro for a while and it helped me a great deal.

    Don't hesistate to see a Dr. or Psych. if you are struggling with your feelings. They can help, and it really, really does get easier over time. You have a grieving process you need to go through.
     
  3. Kelly.Marie

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    The weeks following Jack's diagnosis was almost like an "out of body" experience. I lost 18 pounds, I was afraid to go anywhere alone with him. I would watch the clock and hold my breath waiting for the next fingerstick. There were post it notes all over the kitchen with reminders and tips. But, as everyone on this forum said, you fall into your new normal way of life. I think Jack's resilience and once I saw that diabetes had not changed his laughter, I started to breath.
    I have a wonderful sister in law who listened to me and pitched right in to help. My husband has been so good about giving me a night off here and there.
    As far as books, websites,,,I found reading whatever I could get my hands on helped me to better understand diabetes. And this forum has been a lifeline. To see so many others dealing with the same issues just makes you feel less alone.
    It does get better--until A1c time and then I still hold my breath!!
     
  4. Jake'sMama

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    I see a homeopathic and she gave me a remedy that is used for shock. it was very helpful and not at all zombie inducing like Xanax. PM me if you want more info.

    You are not alone!
     
  5. shekov

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    Sorry you're struggling right now. My advice is to take your time getting adjusted and allow yourself to feel sad, anxious, angry, - everything that comes with a traumatic event like this.

    Congratulations on realizing that you need support and for seeking it out. This site has been an indispensable support for me and many others. I also found a support group through my endo (that I decided wasn't for me after all:eek:).

    If you feel overwhelmed, speak to your Dr. Medication can behelpful for many, including me. I also found that taking care of myself was critical to my ability to deal with my dd's dx. I started eating better, exercising, and taking a mild sleeping pill on the nights that my DH did the night time testing. I found that helped a lot as well.

    In the beginning I found the amount of information a bit overwhelming but I recommend the "Pink Panther Book" to start with and if you decide to pump, " Pumping Insulin". Both are excellent books.

    Stick with the people here who have the practical experience of living with D day in and day out for years. And don't be afraid to call your endo day or night with questions. Good Luck!
     
  6. Becky Stevens mom

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    Hi my son Steven was 3 years 4 months at diagnosis. I went through a very rough time in the beginning. He hated shots, would run away and hide and scream when I poked him with the needle. Some things I did that helped was to go to a therapist. And most importantly especially if your a stay at home mom is to get out of the house as often as possible. Let your husband handle things and go to Walmart if you like or out to lunch with friends. And while you out dont think about your son or the diabetes. And dont feel guilty for enjoying yourself while your out. I find alot of support in here and in the parents chatroom. We all understand each other in here.
     
  7. buggle

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    Can you tell us a bit about your child? How long ago was he dx'd? What are you finding most difficult to cope with?

    I know that in my own case, even if I'm overwhelmed with a lot at once, if I can just deal with one or two things better, it lifts enough of the crushing pressure that I can cope better. So, just thinking that if you could share which things seem to be most difficult or challenging for you, that others might have some suggestions how to deal with those things specifically.
     
  8. Corinne Masur

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    Don't be afraid or embarrassed to seek therapy. Talking to someone you can trust about all your feelings is SO helpful. I recommend someone with either a psychodynamic or a cognitive-behavioral approach. Do you know anyone who has been to therapy and liked their therapist? The combination of therapy and medication can be even better than just one or the other. Take time to get help for yourself and then you can be even more available to help your child.

    Corinne
    www.diabetesmother.blogspot.com
     
  9. lrvesquire

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    A little about me and devon!

    Devon was first diagnosed July 5 2007. He was 18 months old. He was diagnosed after 4 weeks of a "virus." it was missed by his pediatrician until I insisted that they check his sugar and it was off the charts. He was rushed to the er because he was dehydrated and his brain was swelling. THe hospital was ill equipped to handle him so he was life flighted to children's hospital in washington dc. We remained there for 4 days. We have been dealing with the diabetes for almost 2 years.
    His a1c were just taken and they were 8.9. He has never been hospitalized except in the beginning. NO major illnesses. In February the whole family, came down with the flu and his sugar dropped to the lowest it has ever been 50 and kept dropping. But we kept feeding him and it would come up and then he would vomit again. Finally all the n was gone and he was stable.
    Then in March he spiked a fever of 104.6 and i just lost it. My physical response was the same as when my DH called to tell me that I had to meet him at the hospital in July 2007. Hyperventilating and everything and I could not get to him because I had to be in court. After that I realized that i was slipping back into the days from first diagnosis. Stress, anxiety, panic attacks, can't eat because gag reflex, insomnia and top that off with a 3 month old. Lost 10 pounds in a week and realized I have to get a hold of this again. And the strange thing is that he has good numbers. Some highs some (few) lows (and after reading here, my lows aren't even that low) but overall good numbers. good eater. good kid. bright happy well adjusted adn absolutely beautiful.
    Yet the panic attacks came back and are taking over! I think an endo team should include psychological counseling or something at first diagnosis. My doctor explained to me quite clearly that my son almost died and I still have not faced that since i just moved into day to day management. And she pointed out that I have not grieved for the loss of his carefree childhood. So i am back on klonipin and searching for answers again.
     
  10. buggle

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    I didn't go through the same thing as you and other parents who had babies in DKA at diagnosis. My child was older, he never went into DKA and we avoided the hospital completely.

    But... something that jumped out at me is that you could easily be suffering from postpartum anxiety and that could be making everything much worse. So, that's something to consider. You are at the point with a new baby of bone-numbing exhaustion and that would make it more difficult to cope. Plus, the new baby is probably bringing up lots of feelings that have been submerged about Devon, since after diagnosis you really have to just get on with it and don't have time to stop and think.

    Have you considered a CGM? That has alleviated so much anxiety for me. I don't freak about lows or highs. I can sleep better when I sleep. I can correct without worrying about him going too low. And when he's sick, I know what's going on.

    The most dangerous time in the life of any diabetic child is diagnosis. You got through that and Devon is ok. And it's because of your persistence that it was caught in time. So, your mother instincts are on. And he's fine and you've kept him healthy. He's very likely to have a long and happy life -- as much as other children. You're taking good care of him so he's ok. Focus on that. And focus on trying to get some rest. Within the next few months, the new baby exhaustion should start lifting and that will help.

    You're doing the right thing seeking help. The other parents who had little ones who went through a traumatizing hospitalization at diagnosis can tell you what helps them to heal. I really do think with time, that you'll feel better. Some cognitive behavioral therapy could help you identify harmful thought patterns and how to change them. Sleep will make a huge difference in coping with anxiety, so grab naps whenever you can. Try to eat or drink some smoothies when you can and stay hydrated. And keep reminding yourself that your children are thriving and doing fine.

    Our diabetes center has a social worker who helps families with these types of issues, so look and see if anyone specializing in D is available. You probably need a therapist to help with the anxiety as well. I bet you'll feel like a new person a few months down the line once the pregnancy hormones have cleared and you're able to get more sleep.
     
  11. cem

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    You are so far ahead of the game realizing it is PTSD! I am a psychologist who specialized in PTSD (before taking time out to have a child) and then I got it following my daughter's diagnosis. Even given my experience I was no help to myself and had to rely on professionals - a good doc for prescribing meds and a good therapist to keep me taking them and to process the fall out (I continue to recall different bits of the events as time goes by, but it is now manageable). I had been telling people for years that talking about it in great detail repeatedly was the only way to metabolize the trauma, yet my first reaction was to try to put it out of my mind. A therapist was the only person I could find who could handle it - everyone else got traumatized just by hearing it!

    I am stunned at how poor/absent the psychological care for the parents is at diagnosis! I paged the hospital psychologist while we were in ICU and she informed me it would take "3-4 days to adjust to my reality" - I should have popped her.

    Good for you for getting the Klonopin and using it. In order to cope you have to interrupt the biological panic process. I would find a great doc because some of the antidepressants help with anxiety management and sleep medication on the rare opportunity that you get to sleep is a must.

    I know you need to take everything at your own pace, but I can tell you that for us getting our daughter on a pump (she was diagnosed at 19 mos and started pumping at 23 mos) helped immensely as we got rid of the syringes and we recently got the Navigator CGMS (at age 3). Since we have gotten the CGMS my husband and I have actually been able to sleep soundly at times for the first time.

    Hang in there and feel free to private message me if I can be of help. Not being able to find anyone who had "been there" was one of the hardest parts of this experience and thus CWD has been a lifesaver! I thought we would have the hand of our routine by the year anniversary, but it has taken 18-24 months, but we are feeling much more competent and calm at last.
     
  12. Reese'sMom

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    That's what I did...(not about the type-1 so much...but with all of the scary moments in my son's cancer journey)...I had to talk about it. And are you ever right....regular folks cannot handle it and they really do not want to hear how truly scary some of it was.

    Anyway...it's nice to hear from a PTSD expert, that what I was doing was actually processing it so I could get past it. Thanks for that.
     
  13. Gilliansmom

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    As the tears just roll down my face reading everyone's response to this thread, I can remember our therapist telling us, we were living in PTSD all the time! Now with both our girls, one with Epilepsy and one with D, the phone is going to ring at any moment and it will be because something has happened and we just have to walk through the days and show up for our lives. I was so lucky to find a support group near me and on line for the Epilepsy, so that when Gilly got her dx of type 1 on april 2nd this year, I knew exactly what to do! Get through the hospital, get on the phone with my support group and get on this website asap. There is no other comfort than talking with a mom or dad whose child has what my child has, no one else can understand the depth of my heartache, when she cries because the insulin shot is burning her, or she is "fingerstickaphobic" as she says, and just doesn't want to do it. Who can you explain that to except another parent? No one, that is why I am so grateful for everyone who goes on here, 24/7, so I can cry and yell, and ask questions when I need answers. Thank you, humbly, from the bottom of my aching heart.
     
  14. Janimal

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    I also went on Lexipro for 1.5 years after diagnos. It really helped. It takes the edge off the painful, intense emotions and helped me gain balance.
     
  15. Andy'sMom

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    Hi - Just wanted to reach out as Andy also ended up at Children's in DC in DKA (picu for 36 hours, regular room for 3 more days - also swelling of his brain at dx), and also, missed by the pediatrician (in office on Friday where he said we had a virus (again) and gave us breathing treatments and we were in picu Sunday night). You're not alone and the wonderful thing is that Devon is here and sounds like he is doing beautifully and your management is going well! I know it's hard to focus on that, as this is a disease that is with you 24/7 with no break. I also know that a new baby brings more challenges, but it sounds like you have a good handle on the management side of things. I agree with the other posters that reaching out for help via psychologist, etc. is a great idea. Sometimes I think it would just be great to find someone to talk to about the stress of a child with D. This forum is AMAZING and I'm glad you found it! We all know and understand the stress and worry and lack of sleep! Keep posting here and let us know how you're doing. {{{{Big Hug**********
     
  16. cem

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    Forgot to add we were also medivaced to DC Childrens in severe DKA (after being blwon off by a doc we saw on vacation) on June 2, 2007 when my daughter was 19 months old. We ended up going elsewhere for treatment to get my daughter on a pump faster and at a younger age.
     

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