tag:blogger.com,1999:blog-2339303059074627867.post8870964327550182206..comments2023-08-25T08:23:59.391-05:00Comments on A miracle in my purse...and other lessons i've learned from my kids: Autism... the new ADHD? Plus my theories on SIDSJust a smalltown girlhttp://www.blogger.com/profile/04562245873939567556noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-2339303059074627867.post-17289460013569755302009-01-17T20:12:00.000-06:002009-01-17T20:12:00.000-06:00I came across this page because my daughter was di...I came across this page because my daughter was diagnosed with ADHD in early 2008. Her first 5 years of school were a total nightmare and it was during the 4th grade after years of nightly battles to do homework, stop losing homework, turn in homework that was done but mysteriously got lost in the car on the way to school, etc etc (this list is much longer) that I sat in my bedroom one night and had a moment of clarity. I realized that it could not possibly be true that in every household in america a parent spent every evening engaging their children in tearful and emotional tirades just to do regular daily tasks, then collapsed into bed exhausted wondering where they went wrong as a parent. So yes, you could say I do get tired of defending my daughter's diagnosis to the many, many people (friends and family included) who believe that she's just "being difficult" or "lazy" like her 4th grade teacher suggested... the same people who believe that there is really no such thing as ADHD.<BR/><BR/>But, the real reason I am commenting is because after the diagnosis, our pediatrician performed an EKG before prescribing any medication. He ensured us that the "extra beats" he found were probably nothing, but referred us to a cardiologist to be sure. After several appts and many trips downtown, we found that she has a Prolonged QT Interval. The Electrophysiologist confirmed that she does not have LQTS but her QT Interval is on the borderline between Normal and LQTS. She currently takes calcium and potassium supplements to increase her electrolyte levels because she does not eat dairy and only gets calcium from supplemented food that I buy. She had previously suffered debilitating leg cramps quite often which several doctors dismissed as "growing pains." Maintaining the electrolyte levels decreased her QT interval nearly 90 milliseconds, which brought it to the borderline stage and it completely stopped the leg cramps. <BR/><BR/>I agree with your opinion on SIDS after the intense research I did about Long QT Syndrome. My daughter plays competitive sports and having a QT Interval at 540 milliseconds (normal is < 440ms and anything over 460ms is considered dangerous) made her a walking time bomb. We would never have known had it not been for the ADHD diagnosis that led to the first EKG. I do believe that all parents should have an EKG done on newborns, even if they have to pay out of pocket. Additionally, LQTS is a hereditary condition and if found in a child, all immediate family should be tested.<BR/><BR/>Because my daughter has a Prolonged QT Interval, the doctors recommended that she not take any type of stimulant medication for her ADHD. We are managing her issues with private school (extremely small class size), counseling, herbal supplements, and competitive sports that allow her to get her energy out. I'd also like to mention that knowing is half the battle. Now that she recognizes this is just her life, it makes it easier for her to recognize when she is having a particularly bad day. She's in 6th grade now and is able to tell me when she's struggling with attention or her mind is racing. <BR/><BR/>I always remind people that no one knows the children like the parents. I get frustrated when I think back on the many doctors, teachers, and even family members that just dismissed my concerns and told me that I simply had my hands full. 2008 was a difficult year dealing with new diagnoses of ADHD and Prolonged QT Interval, but our life now is actually peaceful each night. My daughter gets personalized attention in school and has teachers who keep a mindful eye on her distracted behavior. She has made the honor roll for three straight quarters... something no teacher at her old school would have ever believed when they threatened to have her repeat 4th grade because she was failing more than half her subjects.<BR/><BR/>No one knows the daily struggles of ADHD like the parents on the front lines. So please reserve your judgement about ADHD kids. And though behavioral and environmental modifications have helped tremendously in our case, the Electrophysiologist acknowledged that the day may come when she will need medication and we will have to weigh the risks vs the benefits with her heart condition. I think that there are probably some parents out there who medicate their kids because it is easy, but I think that is rare. I believe most are parents like me who have tried every other conceivable idea to help their kids just make it through the day and find themselves at the end of the rope. I used to be one of those judgmental people who believed the parents wanted an easy out. I secretly shook my head at a co-worker who had 3 kids all on medication. I had no idea until my own struggles exactly how real of a problem it is. And it never occurred to me that my brother who 35 years ago was told he was hyperactive and nearly taken out of school, probably had ADHD also. We realize now, it is very prevalent throughout our family and it is a very real disorder.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2339303059074627867.post-17265240911449126252008-02-01T13:53:00.000-06:002008-02-01T13:53:00.000-06:00Actually, Long QT syndrome affects more than just ...Actually, Long QT syndrome affects more than just the heart; LQTS patients frequently suffer from epilepsy as well. It also predisposes patients for autoimmune diseases like lupus or type 1 diabetes. Something akin to LQTS can be induced metabolically with no associated genetic channelopathy, brought on by acute physiological or psychological stress such as sustained hypoxia/metabolic acidosis, infection or maternal deprivation. A paper will be published later in 2008 explaining the mechanism behind SIDS and how to prevent it. This paper may shine some light on the mechanism behind autism too. Interestingly, the dry, itchy skin of your autistic child is consistent with this explanation.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2339303059074627867.post-326768179494005852007-12-30T00:46:00.000-06:002007-12-30T00:46:00.000-06:00As a primary school teacher in Ireland I agree wit...As a primary school teacher in Ireland I agree with all you've said re. Autism and ADHD. I've worked as a special needs teacher for the last sixteen years in mainstream schools. These problems are the same throughout the world and will only be rectified by pressure from concerned parents.<BR/>Your comments re SIDS are very true. I lost my wonderful seemingly healthy athletic 21 year old son 4 years ago and almost his younger sister last July (SHE WAS SAVED BY HER ICD)to Long QT Syndrome. His post mortem examination was completely normal. It was only through family screening that we discovered that his father and younger sister have LQTS. She has been assured that her babies will be tested at birth.<BR/>It shouldn't take the death of a child to guarantee this test. I agree that an ECG should be done at birth though the medics will say that not all cases will be picked up.....I know that the QT prolongation can be intermittent.<BR/>Most studies suggest that LQS or other Channelopothies may be the cause of 20% of SIDS deaths. Without testing how can we know?<BR/>At least we know the cause which is not the case with Autism or ADHD. I will never stop working to try to save others from going through the horrific devestation that has happened to us.<BR/>Although I'm still grieving the death of my son I'm grateful for the wonderful 21 years we had together and rejoicing in the presence of my daughter She has just turned 20. To think we could quite easily have lost them to SIDS......!!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2339303059074627867.post-10138810354196375442007-12-25T21:24:00.000-06:002007-12-25T21:24:00.000-06:00I totally agree that ADHD is over diagnosed- esp. ...I totally agree that ADHD is over diagnosed- esp. in schools today. Schools that do NOT provide the correct outlets for children to release their energy seem to have more children labeled as ADD or ADHD. Face it, some children are more energetic and rambunctious than others; and without the proper outlets and mechanisms to release all that pent up energy, sure, they're going to figet and not concentrate well. I truly believe that maybe half or more children diagnosed with ADD/ADHD truly do NOT have that condition, just little enviormental factors that need to be tweaked- just like your making the saop.<BR/><BR/>Since you've done your reading on Autism (Kathryn isn't vaccinated because of that. we're waiting until she's five! but I tend to freak myself out by doing too much research-first time mom syndrome), is there ever a safe zone? Like, if they havent' been diagnosed by a certain age then the chances of them having it drop?Anonymousnoreply@blogger.com