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Everything posted by jekecana

  1. My boys are 3 & 5, african american & both have dysautomonia (to different extents).
  2. I'm so glad you posted this topic.. It's something that's been on my mind lately. My son isn't a Potsy but does have dysautonomia and we have noticed over the past few years that he goes thru periods of bad behavior.. Moodiness & just not at all himself. He recently went thru one a few weeks ago (we had a big cold spell) and I noticed that his pacemaker was pacing ALL THE TIME which is unusual so I wondered if it was related since obviously his heart was having a difficult time maintaining his normal rate. We are back into nice weather and he's back to his normal happy self. He's only 5 so he doesn't really express how he feels inside yet. I assume it's normal to him so he doesn't understand to tell someone that he feels 'off'. Anyway, it's nice to know that others are having similar difficulties.
  3. I'm curious- those of you with urinary incontinence, is it episodic or all the time? My 5yr old has been potty trained off and on since he was 3. We spent most of last year with accidents-- he broke his pacemaker lead & we noticed accidents started right at the same time. Once it was fixed, rate was set high & no more accidents.. Rate got turned down- back to accidents. We have the rate high again and no accidents for 2months when out of the blue- accidents again! He tells me that sometimes he just can't feel it. I'm wondering if this is similar to what you guys experience or you just don't get to the bathroom on time? lol.. He can sometimes just sit at the table for supper and pee his pants, it's not like he jumps up to run to the bathroom- he doesn't feel he has to go and then it's over with. UGH>
  4. I have no dr ideas but just wanted to send you [[[[hugs]]]] and support!
  5. Thanks ladies.. I guess I'll have to look into that and push it more.. I initially wanted the 504 but between the principal & the nurse, got convinced that this was the easier option.
  6. My 5yr old is starting kindergarten next week.. OMG I'm nervous.. lol. We don't have an official 504 plan yet b/c the nurse convinced me that it will be easier to just handle things thru her & the teachers (quicker changes vs having to call case conference ect).. So we are going to try that for now and see if it works. His main issues are heat intolerance & he has a pacemaker (limitations regarding physical contact sports ect) and asthma.. The things we currently have in place for him : -unlimited restroom breaks -unlimited drinks. I'm providing a sports bottle to keep at his desk to help reduce classroom disruption - No outdoor recess if temp is 90 or higher (with or without heat index) -extra supervision at recess for pacemaker issues (he tends to want to do things he knows he shouldn't.. ie. swing on his tummy ect)
  7. I have 2 kiddos on the high salt, high fluid diet.. I don't notice a difference with the salt or not.> I do notice when they don't drink alot though..
  8. I'm glad you are there and they are watching her.> Have they decided on a pacemaker? I'm curious as to what they drew blood for during the PVCs? My 5yr old is constantly throwing PVCs when we are inpatient and no one has every checked into it.
  9. Do you guys normally see progression in your dysautonomia or does it stay pretty stable from year to year? My 5yr old has NCS (dx at 9mo, pacemaker at 19mo) and has a pacemaker for bradycardia & heart pauses. While he's always had a little bit of issue with temp regulation (turns blue w/ chattering teeth in pool -while hot outside within 15mins while everyone else is fine), he seems to be doing a bit worse this year. We've had several episodes this year where he has been out in the heat- not running, just sitting in a baby pool or playing quietly and the next day he is completely wiped out.. Or when we go to the pool, it's not 15mins before he's chattering, it's now by the time he gets to the bottom of the steps. Prior to summer, he used his pacemaker only less than 1% of the time as it just kicks on when his heart would want to pause so he wouldn't pass out.. In the past month, it has switched to pacing 6% of the time.. I'm fairly certain it's due to the heat issues.. Any thoughts? I'm just kinda wondering if this is going to keep getting worse or will level out.
  10. oh my! That is just ridiculous! I would definitely not go to that hospital ever again! We go to a closer hospital once in a while (our children's hospital is 2.5-3hrs away) but they ALWAYS call and talk to my son's EP or whoever is on call for cardio @ the children's hospital before doing anything. I cannot believe that with a heartrate so low that dr didn't feel it was time for a pacemaker.. I hope your EP is ready to put one in and this will help your daughter feel better! My son has had a pacemaker for bradycardia w/ pauses since he was 19months old (he's now a little over 5) and it was a wonderful thing for us. Good luck! Our thoughts are with you!! If you ever need to talk to another mom w/pacemaker kid, feel free to message me!
  11. Hi all I'm not sure how many others here with dysautonomia have pacemakers?? My 5yr old has had one since he was 19months old. He began passing out when he was 4months old and we went thru months of testing, then almost a year trying drugs before they finally decided that putting a pacemaker in was the best idea.. That said, his pacemaker is set up to only kick on when he would pass out. It prevents his heart from falling to low & stops the fainting.. At this point, he only paces about 1% of the time. The dr has it turned down to the 40's and if it falls that low then the pacer kicks in and paces at 80 for a minute or two until his heart has recovered. He has low bp & his heart rate constantly fluctuates quite a bit -rising and falling 10-20 pts at at time. I've always asked them if that wasn't hard on his heart to be constantly jumping back and forth & so far have always been told that it's interesting and they don't *think* it hurts anything. So here's my question.. We had a pacemaker surgery (he broke his lead.. yet again) in Oct and somehow his settings got messed up. Instead of being set in the 40's, it was left set at 80. After surgery, we had a different kid. His heart rate was pretty steady. No more jumping all over the place. His behavior was SOOO much better.. He was just .. happier.. Less grumpy. (He normally has some pretty good mood swings). In Dec, his EP noticed that it was messed up -mainly because he was using it 36% of the time instead of his normal 1%. She turned it back down and we are back to the old behaviors and heart rate jumps all over again.. So I recently discussed it with the EP & she feels it's all a coincidence but if I really want to, she'll agree to turn the base rate up some.. Just to remember that he'll probably pace more and use more battery. Is it just me thinking that the higher rate makes the heart not jump all over the place & is indeed helping behaviors?? Does anyone have any opinions on the matter? I'm thinking we will probably do a trial period of a higher rate to see if there is a difference but I'm welcome to all opinions! Thanks so much
  12. I'm sorry! That has to be scary! We've never had official testing done but my 5yr old has a pacemaker due to his heart pauses (up to 10seconds). They tried meds on him and eventually put a pacemaker in for "just in case" his heart forgot to restart. Good luck.. If it does look like she'll need a pacemaker please know it's not the end of the world. My son is a very active 5yr old and other than the bulge in his tummy, you'd never know he had it. He got his at 19months old. I personally feel much more comfortable having the back up in there.. lol.
  13. I agree Pots & vasovagal syncope are two different things although some similarities. My 5yr old was dx with vasovagal syncope @ 18mo (passing out started at 4mo) and he has never had tachy issues that are normally associated with Pots. Good luck to your neighbor!
  14. Both of my boys have lower than normal body temps. Their "normal" is always in the 96's. So if we get to 99* we know it's pretty high!
  15. Godsgal - my 2yr old is the only one to have high heart rates (5yr old only has brady w/ heart pauses) but I actually came across his by accident. We did an event monitor in Dec due to blue episodes and it recorded over 200 episodes within the month some going too low & some going higher. Our EP said that his heart is definitely over reacting to everything but wasn't going to *dangerous* levels and not going low enough YET to need a pacemaker. She mentioned that perhaps his BP was also going wonky & that was what was causing the blue. So I bought a BP machine & have been taking that at home. I just happened to notice one day that I could feel his little heart beating like crazy just by putting my hand on his chest so I hooked him up to our pulse oximeter (yes we have one of those too.. lol. Pulmonary ordered it for us to rule out o2 issues causing the blue episodes b/c he has asthma & sleep apnea) and sure enough crazy high rates for him. He normally runs 80-100 ish. He ran 150-170+ for 2 entire days. No fever. He felt like crap. Would just groan when it got really high. Since then he has had the occasional higher rate.. a few nites that he ran in the 140's. He tends to come lay with me when it gets higher so he must feel something. He doesn't really talk alot -mostly mimic right now so he can't tell me what's wrong or what hurts.
  16. My 2 & 5yr old are both dx with autonomic dysfunction. My 2yr old has high heart rates (150-170) and low as well. Did they do an EKG while in the hospital with your son?? I ask because we recently saw our cardiologist & she wants me to head to the ER the next time my 2yr old is having one of his tachy episodes to get an EKG so we can capture what his heart is doing at that time. So far he hasn't had another episode- I have no clue what brings them on. Good luck! It's scary to have your kids dealing with stuff like this.
  17. Both of my youngest sons have been diagnosed "dysfunction of the autonomic nervous system". My now 5yr old was dx at 19months and had a pacemaker implanted, although his symptoms & fainting began at 4months old. He faints & his heart pauses (for 7 + seconds at a time)and has a constantly fluctuating heart rate although with GI issues & asthma. My now 2½ yr old was diagnosed this winter, symptoms started this summer. He has worse GI issues, asthma, constantly fluctuating heartrate, wildly swinging blood pressure-from very high (157/109) to low (70's/40's). At this point his heart rate doesn't pause for more than a second or two so he is not what they are considering "in dangerous level" YET. He's also recently started having bouts of tachycardia which my 5yr old never had..
  18. I'm not sure if this helps or not but I was told that anything over a 3second stop would result in passing out. My son (4) is dx with dysautonomia & has a pacemaker due to heart pauses.. He passed out almost every time & his heart would go along fine, then pause for 7+ seconds , then start back up in a normal rhythm again. Good luck!
  19. Thanks again! I'll keep looking.. I always seem to have the -no one sees it in kids- thing going for me. lol! My boys are not Jewish but I did look up the familial dysauto and they have several symptoms but if the no tears thing is an absolute then it doesnt fit because they definitely have tears LOL! Absence of overflow tears / corneal drying Q & J -Poor suck at birth Q & J- Drooling (both drooled for well past drooling stage) J- Swallowing & feeding problems (Failure to Thrive for a long time) Q&J - Hypotonia / poor muscle tone Q& J- Short stature (bioparents are both tall, boys are both very low -10%ish for height) Q&J- Delayed developmental milestones: motor, language, social (Q was behind developmentally but caught up. J is still behind and at 2½ doesn't speak much & is at a 12-18mo stage) Q&J- Inappropriate temperature controls Q & J- Wide swings in blood pressure Q & J- Gastro-esophageal reflux (J more severe) Frequent lung infections or pneumonias Episodic vomiting Q & J- Decreased or no reaction to pain and temperature (I haven't noticed the temperature thing but definitely pain is decreased reaction.) Q & J- Excessive sweating -- OMG Yes.. They actually have major B.O. as well Blotchy reddening of skin with excitement and/or feeding Smooth tongue / lack of taste buds Spinal curvature J- Poor weight gain and growth -- FTT for a long time until we started pediasure. We are finally at an acceptable weight but it takes work. Impaired renal function Osteoporosis and osteopenia Q & J- Fainting and cardiac arrhythmias -- Both have cardiac arrhytmias but Q is the only one to faint so far! J- Sleep apnea - he' supposed to be on Cpap at 2! ugh, he doesn't tolerate it though. Q has never been tested although probably needs to be. Q & J - Restrictive lung disease -- both have asthma?
  20. Thank you KC! I did try a child related dysautomonia site (dyna kids) but was told it was only for the kids themselves to have support amongst themselves and was not allowed in. If you have any others to suggest, I'm more than happy to look there as well
  21. Hi! I'm new to the boards, although I've been reading off and on for a while now. I just wanted to hop in and introduce myself before I start bombarding you with questions We recently finalized the adoption of 2 of our children (we now have6 total). Q(4) and J(2) are biological brothers and have been with us their entire life. Both are dx with autonomic dysfunction. It's long story but I'll try to cut it short Let's start with Q. At 3months old, he underwent surgery to repair two CHDs (vascular ring repair- double aortic arch resulting in vascular ring & PDA repair). At 4months old he began passing out. We spent the next 6months going from specialist to specialist with everyone trying to claim it wasn't their "system" that was screwing up. He wore an event monitor for 3months and we repeatedly would call in episodes- it was only later that we discovered the drs just assumed that we didn't have it on properly b/c it was showing a perfectly normal heartrate & then complete pauses & then starting back up again. It wasn't until one dr had us come down to the children's hospital to be observed over a weekend that they finally believed us. We sat in the cardiac floor room w/ our 9month old who wanted to eat the pretty finger w/ the red light (pulse ox, he got upset when I wouldn't let him and passed out. Boy did the nurses come running. His heart stopped for 7seconds that time. They put him on oral Atropine for 10months but he was still having some passing out and not always due to being upset. At 19months old, he got his pacemaker. His unofficial dx is Severe Vasovagal Syncope. He's too young for a TTT, basically they know his heart goes along fine & then pauses so they decided a pacemaker is a backup so his heart doesn't forget to restart. Since then, he's had 2more pacemaker related surgeries (lead repairs b/c he keeps breaking them! UGH!). When monitored his heartrate constantly fluctuates wildly. He can go from 90 to 80 to 60 & back up in less than a minute. So far all drs who have noticed this have just said that it's "interesting" but they don't know why he does it and dont *think* it will hurt anything. Other than the heart stuff, Q also has asthma, allergies & reflux. He also has issues sleeping (we just started melatonin) and behavior issues that we are still trying to figure out if it is a form of PTSD (hospitalized every 8times in 4years, 4 surgeries & 1bloodtransfusion) or just part of the emotional regulation issues that can come with Dysautonomia. J is 2?. He was born at 35wks. We had a full cardiac work up on him due to his brother's issues as well as prenatal history. He had pulmonary stenosis which resolved itself. He has since had abnormal Q waves but no one seems to know why or what to do about it (if anything. This summer he began to have blue/grey episodes & during a sleep study it showed quite a few heart pauses. He wore an event monitor which captured well over 200 abnormalities (lots of too high and too low- basically his body says Heart, you need to go a little higher/lower and his heart goes A LOT higher/lower) in 30days but nothing severe enough for a pacemaker. YET. The EP just gave him a general "autonmic dysfunction" dx and told us to keep him well hydrated (the boy already drinks like crazy) & up his salt intake. We still see blue/grey episodes all the time and have started trying to do blood pressure readings at home to see if that shows anything. We also have a pulse oxymeter from pulmonary but arent' seeing destats unless sleeping. Not only do his lips turn blue/purple or blue/grey, he sometimes gets grey around mouth, completely white bottoms of his feet & grey genitals. Pulmonary feels it's not their department. In addition to the heart related stuff- J also has asthma, Severe GERD, sensory issues (seeker), hypoventilation & Obstructive Sleep Apnea. Whew, I think that's it. Our story. Thanks for reading if you got this far! If anyone has any suggestions on the blue/grey lips on J- I'll happily take any thoughts/advice!
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