Hi Im new

[Malaika]

Hi, I found this forum after turning to the net for help.
I have a 10 year old son who was diagnosed with ADHD when he was 6 and for the past 4 years it has been hell.
The resources where we live are disgusting, theyve offered medications etc, but thats not a route I want to go down just yet, as he has renal failure and other problems.
He is behind in school due to time off for hospital, he has dyspraxia, is deaf in one ear, has ODD, is under a phycologist because his ADHD doctor thinks there is something deeper than just the above problems.
Me and his dad just dont know what to. Yet when he is in school he is an angel etc, at home he is violent towards his older brother and our pets, he breaks things, he has ' trashed ' his bedroom etc etc.
I dont really know what I want from joining a forum, maybe just to rant and get other parents ideas..

Thanks Malaika

 

[ML]

You have found a wonderful place here with other parents on the same journey. We can offer you our prespective and experiences (strengh and hope). We try not to give advice because we realize what works for us may not work for you. You are no longer alone in this.

The first thing we often tell new folks is to make sure you have a thorough evaluation (preferably a neuropsychologist or multidisciplinary evaluation) because sooo many times our kids are intiitally misdiagnosed and sometimes, even after years, the diagnostic picture remains unclear. One of our members here coined a phrase that works for me. It's called "a brain wrinkle".

Check out the links on the site regarding reading materials, grab a seat and join the group. We welcome you to the family. We will help support you in making the best decisions for surviving this difficult (and sometimes rewarding) road.

 

[BusynMember]

Hi there. Welcome!
Why not give us more information on your son? How was his early development? Any psychiatric problems in his genetic family tree on either side? How was your pregnancy? We kind of need to know more in order to help our best.

 

[Wiped Out]

Welcome to our corner of the world. Glad you found us-you will find much support here.

 

[HaoZi]

Hi Mal, welcome. Just know you're among people who understand here, it's weird for me sometimes after being on here reading all day to go back out into the real world and get smacked again with the fact that so many people don't get what it's like to have a difficult child of any stripe and how much it impacts every little choice you make every day.

 

[Malaika]

Thanks for all th welcomes.
MidwestMom...

My pregnancy was horrific, always felt ill, tired and depressed. I didnt enjoy it at all.
He was born 4 weeks early, by emergancy c-section, due to a problem with his heartbeat. When they opened me up, he had managed to get ' stuck ' sideways under my ribs. The surgeon did say if they couldnt get him out the normal way they were going to T- cut me. I was diabetic throughout my pregnancy, so I knew I was having a big one!
Didnt expect him to be 9lb 9oz big though. He didnt cry like other babies when born, he grunted. They took him straight to ITU and then his problems bacame apparent. He didnt wee or poop, and by day 3 he went upto the whopping weight of 16lb, then they realised he had kidney failure. He had dialysis for 16 days, he had so much fluid on board they thought his brain was damaged, but couldnt do more tests due to the fact he was in ITU.
They did say to me a few weeks after he went to the main childrens hospital, that he ' might ' be brain damaged when older.
Our family history is chequered, my mother suffered with mental health problems until she died about 8 years ago. Severe depression etc, suicide attempts etc. I was never diagnosed, but my parents always thought I had ADHD, it wasnt the done thing back in the 70's. It was just put down to ' naughty ' behaviour etc. I do have trouble focusing now, doing simple tasks can lead to alot of frustration on my part. There is a story running in my family that I was put on liquid Valium as a child, but not sure if this is true.
His early developement was very slow, he came out of nappies at 7 years old, he can't use the toilet by himself, his schooling is awful, he was in a special needs nursery as a baby, but was taken out due to lack of support and care. We found when he went into a mainstream school, he leapt through things. I.E. reading etc, he is amazing at reading, but cannot write properly and is very slow at getting things down. His teachers have now said they are worried, because he doesnt seem to be able to withold information and is doing work from a few days ago.
He is under a nuerologist at our childrens hospital and when he first met our son, he said yes you can tell he is behind. He loves playing with baby toys, watching baby programmes, yet can complete a video game in 4/5 days. He can read a full school book, yet cannot write a full sentence without having to start again, a few times.
I understand Renalproblems cause alot of problems within the body etc, the medication for his transplant can cause side effects, but these have been ruled out by his renal team. We are due to have him evaluated next month by a School Pyscologist fort his statement needs for school.
I hope this helps.

 

[BusynMember]

Wow. Poor little guy and poor you.
I really don't know what to tell you because it seems maybe his early troubles are connected to his learning problems. I just hope you can find him the help he needs. Where do you live? The US has different supports than other countries. Maybe somebody else on the board is from where you live.

 

[Malaika]

Hi

We are in the UK. The trouble with where we live is the system, funding is getting lower for people with ANY disability, our son's teacher, health care workers have all said the same thing... its down to departments getting closed down. We had a wonderful renal Social Worker when he was little, but now the social work dep at the hospital is no longer there.

 

[TerryJ2]

Hi Malaika, welcome.
Gosh, he has a boatload of problems.
I am so sorry your svcs are so crummy.
Definitely, his prenatal life and renal issues have an impact on him.
I am not sure what the side effects would be if you put him on a stimulant for attention. You've got a more severe risk-benefit ratio than the rest of us.
However, it sounds like right now, he has very little quality of life.

There are others here from the UK. I hope they logon soon.

Nice to meet you.