Children’s Sudden Sickness

As some of you know we’re dealing with a children’s sudden sickness. Our daughter, Sammi had an episode of a high heart rate about three weeks ago. It happened at school when she complained of chest pain and the school nurse found her heart rate in the upper 130’s. I took her to the emergency room, which ended up with a visit to the a pediatric cardiologist, an echo-cardiogram, blood work, a halter monitor and a sleep study.

We were told that she had Tachychardia, Mitral Valve Prolapse and was prone to dizzy spells due to the heart palpitations (high heart rate). The only instructions we were given was to increase the salt in her diet and for her to lie down when she felt dizzy. There is a possibility of complications because Sammi is double jointed (she’s been diagnosed with hypermobility), my older daughter has scoliosis and Shawn’s aunt had Marfans syndrome. What does this have to do with the heart?  These conditions and a family history of them can cause problems with heart valves. Marfans syndrome can cause the aorta to weaken and tear.

Sammi

When we left this cardiologist’s office, I though we had an appointment for January, but he didn’t want to see her again until November (1 year later). I called to ask questions since the information sent to Sammi’s school stated to call 911 if her heart rate was above 150 and didn’t mention anything about what to do if she was dizzy. No call back. We also asked about the heart monitor, which she wore for 24 hours. She wasn’t in school and slept most of the time. We wanted her monitored while she was active. Again, no response.

On Monday, Sammi went to school and was running in PE. She felt dizzy. A friend walked with her to the nurse’s office. Her heart rate was 147. I was told to come to the school. I had already called the pediatrician, who said to bring her in right away. While I was driving to get her, the nurse called and told me that her heart rate went up (at rest) to 166. She had called 911. I was literally wailing trying to get there before the ambulance.

I made it just as the ambulance arrived. She was rushed to the ER where another EKG was done. Blood work was done as well. This time though, there was no nurse monitoring her heart rate every fifteen minutes like last time. When she got off the bed to use the potty right there, her heart rate went up to 150. Nothing was noted on her records. When her blood work came back fine, she was discharged with a diagnosis of palpitations. The nurse read the instructions to me and I told him, she’s already having these symptoms, but you’re telling me to bring her back if they happen!

We left and decided to go to All Children’s Hospital for a second opinion. The appointment is tomorrow.

These past 3 weeks have been so difficult. I don’t know how parents who have been given much worse medical news about their children do it. I’m not coping well at all. We just want Sammi to feel better which will mean answers.

Thank you to my readers, my Facebook and Twitter friends who have been sending me loving messages. I’m sorry that I can’t answer them all, but I read them and feel the love from them.

If you’ve been through something like this, where your child has had a sudden sickness, what have you done to cope?

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Connie Roberts

Professional Blogger
Living in the Tampa Bay area, I'm lucky enough to see beautiful sunsets almost every day. Although life can be difficult at times, focusing on the positive and being with my family is what gets me through.

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Comments

  1. Your post has me in tears. Poor Sammi and poor you. I hope you get some better news or answers at the All Childrens Hospital. I will be thinking of you two!
    Stefani wrote this fabulous post..Reverse-A-Purse Review And GiveawayMy Profile

  2. Now I have read your article and by the way I found you website on Google and I think after I read somepost on you website especially this one I have my own comment about what should I tell on the next hang out with my family, maybe today I will tell my girlfriend about this one and get debate.

  3. Poor Sammi! I’m just catching up on all that’s happened and I hope you get some answers. I’d be livid with those doctors and nurses. As patients, we shouldn’t have to demand answers to issues doctors are trained to identify and treat.

    And your situation is just as valid as other families, so don’t you go dismissing your feelings because it could be worse. You’re going to get to the bottom of this and Sammi will be good as new.

    xoxo

  4. Oh Connie, my heart breaks for you. I think you are doing exactly what needs to be done – more opinions. You need to go to doctors until someone listens and helps you to make Sammi feel better. Thoughts and prayers coming your way. Please update when you can. Lots of long distance hugs coming your way.

  5. Hi there!
    My 1 year old brother has hypoplastic left heart syndrome (I really hope I spelled that right. Don’t have time to check because he’s pulling on my computer right now). Ben (the brother) has already had a couple of open heart surgeries starting right after he was born. I can’t really say anything from the parent’s perspective, but I can tell you it isn’t fun from the sister’s either. Helpless is the most terrible feeling there is.
    We had great doctors and great people surrounding us during the whole process of getting Ben well. I’m happy to say that I don’t have much time to write this because I have to go chase him around. He’s 1 and a half now and doing very well. He’s a reminder to us every day of how precious life is and how lucky we are.
    More information regarding his journey is available at http://www.caringbridge.org/visit/babymeert. If you need someone who understands to talk to my stepmom (Ben’s mother) is always willing!
    Hope it all turns around and don’t forget that in the end there’s always an important lesson to learn from things like this. I learn something new from Ben every day.

  6. Connie Roberts
    Twitter:
    says:

    Hi Stefani, Things are much better. We did get a better explanation from All Childrens. Although we don’t have an exact answer yet, we’re not as worried as before. Thanks for caring!

  7. Connie Roberts
    Twitter:
    says:

    Thanks Corrin, it is frustrating to have to deal with doctors who dismiss symptoms that are considered serious other medical personnel, including other doctors. To have our daughter in an ambulance rushed to the hospital was such a scare! She’s doing a lot better now because she’s using an “Event Monitor” for one month to keep track of any dizzy spells, chest pain or fast heart rate. Then we see the new doctor in 6 weeks.

  8. Connie Roberts
    Twitter:
    says:

    Beth, you are so kind! I hope that you saw my updates on Twitter and Facebook. The new doctor and staff at All Childrens has been amazing. Sammi is being monitored for 1 month and returns for a check up in 6 weeks. She’ll be seen every year for an echo-cardiogram because of the mild regurgitation with the Mitral Valve Prolapse (which the 1st doctor didn’t even tell us about). The monitor will tell them what is happening at the exact moment she has any symptoms.

  9. Connie Roberts
    Twitter:
    says:

    So true Anna, there is a lesson to be learned even from the tough things that happen in life. Sammi has an older sister who lives out of state and it has hit her hard too. Thanks for commenting and letting me know what it’s like from a sibling’s point of view. I’m happy about your brother as well!

Trackbacks

  1. […] has been diagnosed with Sinus Tachycardia about a month ago. We don’t have an answer as to what is causing her heart rate to race and […]

  2. […] My daughter, Sammi recently had a sleep study done and that is her diagnosis. We are shocked. We knew that she’s been sleepy, weak and having trouble concentrating, but that diagnosis hit us hard. In the same vein, it may be the answer to a lot of the troubles she’s been having at school and possibly her sudden medical problems. […]