Neurocardiogenic syncope

my 11 year old t1 was just diagnosed with neurocardiogenic syncope and postural orthostatic tachycardia syndrome and has been put on a beta-blocker, atenolol. They said it could be related to t1.. Has anyone had experience with either of these two diagnosis...

My daughter was dx'd with POTS around 11 years old, she is now almost 14. It was very severe for about 5 months with daily episodes of near passing out. She experienced severe anxiety during this time, as a result of her fear that she would continue passing out when standing. She is much better now, but will have an occasional episode. After the onset of puberty, things calmed down, but she still needs to be on electrolyte drinks and elevates her feet when she can to decrease the chances of it returning. 

my son is 11 and just diagnosed. it has been a nightmare.  He always thinks his blood sugars are low and checks up to 30 times a day.. At first i was letting him check whenever he wanted but it was getting so bad that now i have to limit him... we increased fluid intake and sodium but that was not enough.  they started him on atenolol and that helped some of the symptoms.. we just started florinef so we will see.. seems cruel to have two diseases with common symptoms. He is so anxious.. any ideas of how to respond that worked for you.. His fear is real and understandable... It is slowly robbing him of his childhood....  ugh.. Thanks for responding back.... some days are so difficult that we barely make it... I am hoping that when puberty is over things will get better...

Hi Kerri,

My daughter and I just finished reading your reply and our eyes both are filled with tears. Your situation with your son is identical to what my daughter and I went through when she was 11. It took over our lives, her fear was so bad that she would eventually not get out of bed, as she was so afraid that movement would cause her to pass out. She wanted to check her blood sugar all the time, because when she would feel low, she would correlate it with the feeling the POTS caused. She refused to take correct insulin doses for meals and corrections, as she was fearful of the lows (she is on pump). Ultimately, this caused her A1c to climb up to 11%, and made the condition worse.

I said to my husband exactly what you said, "this is robbing her of her childhood"!! Ultimately, we took her to University of Miami/Diabetes Research Institute for a 4 day intensive workshop to help her through the complications that were developing. We sought the care of a pediatric psychiatrist who recommended an anti-anxiety medication so she would be able to function. We were ready to seek out a second opinion from another Cardiologist, and then things slowly calmed down. The cardiologist didn't think it warranted medication at the time, but if they had been suggested to us we would have done anything to make it stop. After the episodes lessened, she continued to describe feeling "out of her body", which was continually distressing for months after the fainting episodes eased. The cardiologist thought that her having Celiac may affect  the condition, as she doesn't absorb electrolytes as well. Just putting it out there in case you haven't yet had your son tested for Celiac, it is more prevalent in those with Type 1 Diabetes. 

As I mentioned, our daughter is almost 14, and the episodes are very rare now. However, she still has reddish-purplish colored feet and ankles, and needs to drink and elevate her feet frequently. Ironically, yesterday she had an episode at a restaurant, which was the first time in over 6 months. This is what prompted me to go to the "Diabetic Complications" forum last night. I am so glad to have crossed paths with you, but am so very sorry that you are going through this struggle right now. It was one of the hardest times in our lives, and far surpassed the stress of  the onset of Diabetes. I really believe that as the hormones calm down, the condition will lessen. In the meantime, addressing your son's anxiety and getting counseling from someone who is familiar with the condition and chronic disease may help (it made all the difference for us). 

We are here for you if you need to talk over the phone or email. My daughter has offered to talk to your son or maybe even correspond over email, if you think that would help at some point. 

 

Hi Caroline...  Great big thanks for responding back and for the insight  and hope you and your daughter offered to us.. We were  just getting our  footing with the diabetes and then to get slammed again .. it has just been too much... I am feeling powerless to help him.... It has literally taken over our lives and i constantly have to reassure him that he isn't low and give him limits to how much and when he can check... his a1c has gone up one whole point and i fear it will continue to trend upwards because he only feels comfortable with sugars in the 200's  and will not cover himself with the correct amount of insulin .. ugh.. I asked his endo about a cgm and we are going to do a week long trial run to see if this helps his anxiety, but i fear, regardless, his happiness will be determined by a number and he will be constantly preoccupied with where his sugars are..... I have thought about counseling.. it really helps to know that others have experienced the same things.. sometimes we feel like we are going crazy and this has definitly caused some contention between me, my son and husband.... not all on same page about how to intervene.. Brady would check 50 times a day if i let him.... He actually sleeps with his glucometer... I am angry that he has yet another wall to climb... He has been checked for celiac disease and is negative.. His skin also gets mottled... ugh.....We are taking a 3 week camping vacation to Maine starting tomorrow so i am praying that he feels good enough to enjoy it.. I am sure he is sick of the inquisition... what's your blood sugar? How much have you drank? What have you eaten? How do you feel? Have you taken your meds??  Blah Blah Blah...... I miss the good old days of go clean your room.. etc.. Thanks for letting me vent. It helps to talk to someone that has been there because unless you walk the road you could never understand...                You and your daughter have a blessed day!!!  thanks again!!!

I didn't realize your son had just been diagnosed with Type 1 in the midst of all the other issues. My daughter said that when we went on vacation during the "difficult time", it actually helped force her to not think about her fears as much. Hopefully you will find the same to be true on your trip. The strain that it put on our family was so immense, my then, 3 year old daughter went around saying "my sister is having another panic attack"! We laugh when we think back on that, but the reality was that everyone's life halted from the fear and survival mode that affected each one of us profoundly. Our faith got us through, and the intercession of the Lord in our lives was truly God's grace lifting us out of the darkest of times. 

I am not sure how to communicate with you privately, but would like to give you my personal email and  phone number.  If not, look me up on Facebook, and I can give you my information that way. Caela is my daughters name, and she would love to mentor your son through this, in anyway. It has helped her so much just in the past few days not feeling alone. Knowing this makes me wonder how many other families out there are going through the same thing? Maybe there is some way to post on the forum to see if anyone else has experience with these dual diagnoses. 

Prayers for you and your family, just remember to breath and trust that "this too will pass".

Caroline

 

We are leaving soon but I wanted to respond back... I hope that vacation will distract him and maybe get us out of unhealthy routines.  We need clarity, hard to see the forest thru the trees. Our faith has also sustained us through these dark valleys.  The love and faithfulness of the Lord has carried us as we hold on to his  promises and believe in his word above the circumstances...  I don't have facebook but my son does, brady nowak..  my e-mail is kerrirunnergirl@yahoo.com.   Please tell Caela thank you for offerring to mentor my son through this, what a wonderful expression of the love of God...He read the e-mails and they can friend request and chat.. We probably  won't have access to a computer, but when we get back we will get in contact with her.

  I too wonder how many other families are going thru this...

   Thanks again for sharing a part of your life with us.. It has truly strenghtened us and has given us a lifeline... hope... what a wonderful thing!!!   kerri