hi Bethann
thanks for reading , l really didn't expect anyone to read it. I could have kept going , my mum has been telling me to write a book , lm starting to think she is right . I think if l get a correct diagnose for jesse then l may do it.
I too thought Autism , l actually had very strong feelings about it until l saw a child with CP on a tv documentry program . l also thought about the age my son was when things when down hill and an injury he had . Autism usually begins between 12 - 18months . My son's behavour changed around 4 and half.
As for the lessions they showed up on the first MRI , the DR's can't explain how or when they got there , all they do is get Jesse to have a yearly MRI.
Jesse has had 4 MRI's , the results are the same , they always say it's a good reasurence when there is no new lessions , but that really doesn't mean anything to me anymore.
Jesse has an oppointment this week with the peadiatrician , he took me serious and said he would consult with the other specialists who have and still are dealing with jesse. Im hoping he has followed through . So hopefully l'll have some good news soon.
Jesse is the same , thanks for asking , its very frustrating at times because he is 15 and his actions don't match his appearance.
I'll keep you informed .
thanks again for reading
sharon
Hi,
Wow, your story is amazing. I write this because you have seen the issues from all sides. Meds are extremely important and usefull for some and a nightmare for the misdiagnosed. You are not anti medication you have seen it make a difference in your life (my children both do extremely well with meds, after several med changes) but there is a huge downside if not correctly used. Good luck, I love your story because it is authentic without all the prejudice one way or another.
I agree with hausof4.
hi all
my name is sharon and this is my story , l am 35 , a mother of four, l have ADD and my eldest son was diagnosed with ADHD , ODD and more . My story may help some and if anyone has a similar story l would love to hear from them.
l am new to this site and have reading alot of posts. My eldest son was diagnosed with adhd at the age of 8 , l started noticing he was different to other kids at the age of 4 and a half . He started playing agressive , was non-stop . ( even when he was sick l would have to chase him around with a bucket) . When he was 6yrs old he started school , he would crawl around the class and bite the kids and teacher's ankle , when the teacher's tried to stop him he would cry out "I WANT MY MUM'' then break down in tears.
At the age of five , l noticed he wasnt very co-ordinated , he stopped using a fork , and went back to using a spoon , he didn't seem to have any muscle control or strength in his upper body . His gross motor skills were regressing, l also started to notice his face expressions changing such as a stiff mouth (when he smiled it looked forced and it was a half smile) and his eyes were not as open as they used to be. His speech was not improving , he could no longer hold a pencil or crayon , basically all his fine motor skills were going down hill. He could not interact with children his own age he would roar at them as a way of saying hello or if he was in a playground where kids were playing a game he wouldn't join in but would sit next to them , however he could join in with a group of adults. He's sensative to loud noises such as a vaccum cleaner, lawn mower and music.
l thought he had adhd and found a pediatrician who did diagnose him with it . The medication worked for awhile then he went back to his old self , so the dr just kept trying diff dosage's then different med's then more than one med , he ended up on three med's at once , still doing nothing but causing losing weight , insomnia , losing his appetite .
The med's that he was put on over 6yrs were dexamphetamin on its own then added with it was catapras and ciprami , Then stopped the dex and replaced it with attenta. (which is a genetic brand to ritalin ) After still not working they tried risperdal , which is for bi-polar , l gave him one tablet and never gave him another one he went totally agressive nad may l say "crazy" . l decided to try another dr as all they wanted to do was experiment with med's and not try any other solutions.
l found a dr who was willing to explore some other medical reasons for his behavour . In the mean time the dr prescribed strattera. l thought l was finally moving forward . W were sent to different dr's such as neurologists , pyscolagists and specialists in dyslexia and dysphraxia .My son had blood tests , brain scans and a MRI . They found leisons on his brain but could not tell me how they were caused or how old they were. During this time he started to regress , he was suspended fromschool constantly , so waiting for a spot in a support unit he could only attend school for 3hrs a day with a teacher's aide.
My son was now 9yrs old and l had three children now . I was at a lost and and started thinking he has been mis-diagnosed , l thought to myself " if he has adhd surely one of these med's should work and wondering if these meds have made him worse . (l mean if your taking the wrong medication for a disease it can be harmful) He was showing alot of signs of other disability , one being autism . I wanted to look into it and was asked by the dr's "why is it so important ?" my response was always same . l wanted to know what was wrong with my son so l could give and get him the correct treatment . l also asked many dr's if the medication was the wrong one , could it affect his brain and they all said and still so NO , but l disagree.
The school teacher's and myself thought he had some traits of Autism , routine was most important , we did some reading and decided to follow some of the suggestions . Like using photo's and picture's instead of writing or having to explain what to do , that did help but l still feel that we are missing something and l was determined to find it.
After finding the the leisons the neurologist wanted to do another MRI in 12 months , during this time the strattera wasn't working so l decided to stop all medication , l refused to continuely "drugging my son"
My sons behaviour was the same , l struggled every day , the dr's never seem to care. My son got into a support unit 4days a week and attended mainstream school for one day a week . During this time he was showing different behaviour which showed alot of signs to being autistic. A few years ago we looked at Autism but there wasn't alot of imformation to be found. With the dr's not doing much l did my own research and had to cope without medical help , he still had his yearly MRI which still are the same . My son also got into a special school for mainly kids that can't handle mainstream due to severe learning difficulties and poor social skills.
Meanwhile my daughter was starting to have learning problems and showing signs of ODD , it didn't take me as long to get her into a IM class as this was my second time round and new exactly what to say and do . it took me 6yrs to get my son in the right school but only took 9months to get my daughter in the IM class. My son and daughter fight non-stop so l have them in therapy together and he told about a really good pediatrician , of course l didn't get to see him till my son was 15yrs due to waiting lists ,
The pediatrician agreed that my daughter has a mild case of ODD and a severe learning disability . As for my son l was looking on the computer and something caught my eye it was "cerabral palsy". The more l read the more this sounds like my son , everything started making sense . the regressing , weakness in muscles losing his fine and gross motor skills , facial muscles . The pediatrician has taken me seriously and is reviewing all my sons previous notes. So now its just a waiting time for me.
Every time l think about it , l just get so mad .He could have had different types therapy all those years ago , joined a group so he didn't feel like a "FREAK" as he calls himself. dr's are willing to give out these medications too quickly , they think its a quick fix , don't get me wrong if they work lm all for it but if it's not working they need to do more investergating. The dr's have said that the med's can't cause long term side affects but l still think otherwise . lm not using medication on my daughter for now , she has a tutor and is showing improvement , her behavour at school is ok . It is worse at home but lm just not ready to go down the medication track yet , l think kids should be able to have a say when it comes to the medication , my son told me it made him feel sick , got headaches , didnt want to eat and started hearing voices , this was after l took him off them , so maybe he was clear headed when off the med's If the kids are older they have more of a chance of describing these feeings. I don't blame parents for wanting to try medication and l don't want to tell them not to , but what l will say is as soon as they stop working , stop giving them and demand your dr to do more investergating.
I have never given up and l don't plan to. I find its alot easier for me as l grew up with ADHD , l was never diagnosed with it back then , l always knew something was wrong with me , l struggled at school always failing , had a hard time making and keeping friends and l had a bad temper . l could never follow instructions or focus on one thing at a time , the worst one was being late , cause l would have so many things going on in my head and l couldn't think of what needed to be done.
l was assest at the beginning of this year and started taking ritalin , so many people have noticed a difference in me , it took along time to get the dosage right and l did feel nauses and got headaches at the start but that doesn't last too long , but it is totally worth it. l've been able to do so much around the house now that l wouldn't of even tried to do before and lm able to clean the house as well . Before , l would start in one room get bored and move to the next and never had a tidy house . lm also in more control with the kids , instead of joining in l am able to get hold of the situation . It did however take awhile for me to get control of being on time , but now out of 10 days l'll only be late once , my family and friends used to have to lie to me about what time to be somewhere cause l was always late , they don't have to do that anymore. l am able to read instructions and do as it says . l think thats the best part.
Living it has helped me understand my two older kids and fight for them , l get angry in one sense that my mum didn't fight that way for me but she didn't know how it felt and trusted teacher's , who told her not to worry about me cause l was smart . l don't blame her but l do get angry about the situation , if one person had noticed my life could have turned out so different. With an education l would have had a chance . But l ended up being in an abusing relationship , then a single mum at age 20. l never said l was smart l always said clever and could win an argument even if l wasn't right , l was able to remember alot of phone numbers , and could remember word for word after watching a movie , but l couldnt read aloud and l had to read things over and over and most times never understood what l was reading . Anything with number's was impossible
l have done a photography course which l never thought l could do and next year when my youngest starts school , lm going to study to become a teacher's aide for kids with Autism .
Well thats my story l know its long . l also know there is alot of words that are spelt wrong. Sorry for both.
thanks for reading
sharon
Great post Sharon, Please update us with your results for your son.
I wondered as I read your post whether there was autism, but then when you mentionec cerebral palsy, I thought boy, to be diagnosed with adhd but it is really cp - wow!! I even wondered sensory integration. What a story.
I am amazed and mad that no professionals could help you sooner with your son. Lessions on the brain, have they determined if that is accurate and still the case? How is your son now??
I wish your son and daughter, as well as you and the rest of the family well.
Please keep posting and passing along your own experiences. They do help others!!
I look forward to your next post!!