View Full Version : Hi everyone
01-25-2009, 10:00 PM
Hi everyone. Here is my introduction and the story of my son's very frightening diagnosis. It all began around Christmas in 2008. Houston woke up around 5 am complaining that he didn't feel good. I assumed he was coming down with something perhaps a cold or a stomach bug and gave him Tylenol. He did pretty well the rest of the day. The next morning he woke up once again rather early complaining he wasn't feeling well but he really could not tell me what was wrong. He didn't have fever, so I thought It was just some mild viral infection and gave him more Tylenol to treat any pain he might have. He was fine the rest of the day. The next day we enjoyed a day with my family and he played and of course ate tons and played a lot. I went to a party with some friends that night from about 6 to 11 and left my husband at home with all of the boys for a few hours. He called at around 9 and said he was vomiting non stop. He would drink something (koolaid, or gatorade) and vomit immediately. I left and went home right away. I decided a trip to the E.R just to get him checked out was needed. So we drove over an hour to the nearest hospital and had them take a look at him. They said he was most likely suffering from a stomach virus and pharyngitis since her throat was a little red. (the vomiting had actually caused the inflamation in his throat). We were sent home and told to limit his foods and fluid intake to small amounts every few hours until he quit vomiting and then we could start him on the B.R.A.T diet. By late the next afternoon he seemed to be doing better. He didn't have much of an appetite for a few days but a few days later he seemed almost normal. However, his tounge was red and coated with a white film. I made a follow up appointment for him the next day. By the next morning something was telling me things were just not quite right. He was sleeping half the day, and he was drinking a ton of liquids (kool aid, gatorade, soda, water, anything he could get his hands on). He was going to the bathrooms 6 times in an hour and I knew all of these things together were not a good sign and I refused to let it go. I had done a lot of research and all of these symptoms were pointing to Type 1 diabetes. My husband and I drove her to the clinic an hour from home and had him looked at. He had gained a few pounds since the E.R visit but I was not convinced he was getting better. I asked the doctor about all of the strange symptoms he was having. Infact, I point blank asked him if he thought it might be childhood Diabetes. He looked at me like I was a moron, and said "Don't worry about that, they do not get that at this age. He's 15, if he was Type 1, he would have developed it by now." I felt dumb for even asking and we left. That night he was vomiting again. We limited his fluids, did not let him eat until his stomach settled and he stopped. Saturday night he began vomiting again. It was late when I got home and I managed to get him settled into bed and I went to bed as well. I remember laying in bed thinking if I woke up and he was still sick I was going to march him right back into the E.R and throw a fit. I could never have been prepared for what I woke up to that morning. He was asleep on the couch. He was laying in his own vomit and was to weak to move. I put him in the tub and washed him off. He looked like death warmed over. I had never seem him look so bad. He was almost skeletal. His eyes were sunken in. I was panicked. We drove him to the E.R. and I marched in just like I planned but instead of anger, I was hysterical. Needless to say no one likes a crazy lady in the E.R so they got us in rather quickly. I told the nurse I knew he was going to die unless they figured out what was wrong with him. I said, "look at him, he is dying. I do not even recognize my own child. Please, please don't send us home again." So that night Houston was dx'd with Type 1 diabetes. I don't know what would have happened if we hadn't taken him in. It just gives me chills to think about it.
I hope to soon build a support system here.:cwds:
01-25-2009, 10:31 PM
I can not even imagine being turned away once, let alone twice after knowing what i know now about diabetes and DKA. I think i may have some law suits on my hands....you really stirred up things in me with your story. You know, that "Mama Bear" comes out when people mess with our kids! After so many days of vomiting, what was his glucose level when they finally had a brain to do a finger prick? Thank God everything is better now. This is a great place for the support you need right now, even though i'm sorry to have you here - Welcome.:)
01-25-2009, 10:56 PM
Your story moved me to tears.
I am so glad someone listened to you and properly DX'd your son.
I really wish there was more education about Type One D and it's symptoms.
Thank god for the internet and for a Pediatrician who ran the tests on my son immediately in his office and did not dismiss me. My son's BG was 422 at DX and he was not sick at all. After reading a lot of DX stories here, I realize how lucky we were.
I am glad you found this site...it has been a great support for me.
01-26-2009, 05:45 AM
Sarah, when they finally did check his bg it was 1206. :(
01-26-2009, 09:26 AM
Your story makes me so sad. Thank God you kept pushing. There are similar stories, that ended up with a child not making it. It really makes me angry to hear an ER staff was not educated and TURNED YOU AWAY!! When my second was diagnosed, I could smell her breath and knew what it was, immediately! 1206?!! That is the highest number I've ever heard. Prayers to you....Sharon
01-26-2009, 10:07 AM
I just wanted to say welcome, but sorry you have to be here. You have found a great site for support and information. The early days are very tough, you are overwhelmed emotionally, sleep deprived, and scared. But over time you will become more comfortable dealing with all the things you need to do to live with this illness. You will find a "new normal" believe it or not and things will get into more of a routine. All the parents here are proof of that.
Here are some books you may find useful:
• The "bible" of childhood diabetes, "Understanding Diabetes" (aka The Pink Panther book) by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
• Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin [ILLUSTRATED] by Gary Scheiner, Barry Goldstein
• Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace, Second Edition by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover. US$16.95.
• Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers by Ragnar Hanas, M.D. Published by Marlowe & Company, New York, 2005. ISBN 1-56924-396-4. US$34.95.
Not sure what your school situation is, but here is a link to a thread that has a lot of info about dealing with schools.
Finally, in addition to the forums there is a chat room here where you can talk to other parents in "real time".
Hang in there :cwds:
01-26-2009, 12:49 PM
Sorry you had such a rough time getting a diagnosis (or getting a diagnosis at all :(). This site is a great resource.
I'm actually surprised your son was started on Apidra right away. What part of the country/world are you in?
01-26-2009, 02:58 PM
His endo originally put him on Novolog but soon switched to Apidra because highs took a lot longer to come down with Novolog. We are in Vermont.
Becky Stevens mom
01-26-2009, 03:11 PM
Hi Laurie, I'm so sorry about what happened to your son. That should not and can not be happening in the 21st century, I'm not sure where your from but that doctor sounds like hes from a third world country and couldnt afford medical school. Type 1 diabetes can and is diagnosed at any time. Mary Tyler Moore is the JDRF spokesperson and was diagnosed at the age of 34 I believe after suffering a miscarriage. Many children are diagnosed young, my son Steven was 3 1/2 at dxd. You are an awesome Mom! Im so proud of you for not backing down. Most people are smart enough not to mess with a Mom:D Your son will be fine now and will learn to adjust to this new way of life with your love and support his life will be full, healthy, happy and normal. You will find many new friends here in CWD, join us in the parents chatroom anytime there is usually someone there to chat with.
Mom of 15 yr old
01-26-2009, 03:46 PM
I am so sorry to hear of your son's diagnosis. As a mom of a new dx 15 year old (12/17/08), I am just starting to get familiar with this site and am finding it so informative. I feel I can be myself here and really say what is on my mind and others will understand. Your son will now be fine now that he is diagnosed. It is a struggle to get used to the routine - but we are finding that things are much better now. I have a daughter that is happy and although still a teen - has many more great days - than not so great. (which definitely wasn't the case before). Take care and hope things go better for you!
01-27-2009, 11:41 AM
A similar thing happened to me when my daughter was diagnosed in Aug 07. I noticed she was losing some weight ( but she was aways the picky eater and the most active of my three girls ) so we didn't think much of it. Then she started drinking more and using the potty allot ( it was in Austin TX in the middle of the summer ) so we didn't think much of that UNTIL.. I noticed she had a white film in her mouth. We took her to the Dr. she said " Its from her ortho appliance in her mouth, no worries" The next few days she complained about itching in her privates. So we went to the Dr again. She actually wanted to get a vaginal swab done on a 11 yr old. We were sent home again. The next day I was searching the Internet for possible diagnoses. At the same time she began vomiting ... THAT'S it!!!! I took her back and had to tell the Dr Its is diabetes and TEST HER BLOOD NOW.. She took her sweet time searching for there meter... then searching for batteries since it was so long since they used it.. It came back almost 500... Of course now they take me seriously, call the ambulance and we are on our way to the Children hospital. My husband tells me not to be bitter towards the Dr.... but I cant help it. I still worry and PRAY for a CURE daily..
01-27-2009, 01:56 PM
Oh Laurie, what a frightening experience. I keep hearing these stories of doctors who don't clue in to developing diabetes and it's so frustrating and scary. Thank goodness you kept trying.
How is Houston doing now? And you?
I have three boys too, but Aaron is my youngest. I guess I can't call him the baby anymore -- he's turning 17 soon!
01-27-2009, 03:19 PM
He is doing pretty well. Still adjusting to everything but things are getting better relatively fast. I am doing okay also. I'm just glad that we know what is wrong and that we can start getting used to our new 'normal'.
01-27-2009, 07:24 PM
Wow...that definitely should not have happened to you or your son. Some Dr's get these set in their ideas that "a child of this age or that surely couldn't have" whatever the obvious diagnosis is, and they won't even test for it. My son was misdiagnosed for a more serious disease based on that same type of thinking last year (cancer). The best Drs are the ones that take very seriously what the mothers (and dads) are saying...we KNOW our kids and our instincts are nearly always correct.
Thank God he is on insulin now and will thrive with good care and management.
Wow, 1200 BG, and I thought my daughter 750 was high! You will build a good support system through this site. Pretty soon, you'll start thinking about how he will handle his diabetes once he is away from you. There is some good reading referenced on this site about handling those late teen years.
My wife and I are JDRF Volunteer Outreach Mentors and so add us to someone you can contact for advice.
02-05-2009, 06:51 AM
Laurie, you're story -- really Houston's story -- is such a scary one. I'm glad it had a happy ending. I can't imagine what you all went through. Doctors who still believe that a 15 year old is "beyond" the threshold for diagnosis as a T1 should be horsewhipped.
((HUGS)) We're all here when you need us.
02-05-2009, 03:46 PM
Hi, I'm new here too, your story is all too familiar. My 15 year old son was diagnosed on Nov 30, just 5 days after his birthday. His BG reading was off the charts at the Hospital. We are beginning to cope though. I'm so sorry, your experience was so frightening. My heart and prayers are with you.