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Mummy's Help Me Diagnose My Son !!! ???

post #1 of 29
Thread Starter 
Ok - I'll start from the top.

He was born elective caesarean at 39 weeks - I didn't go into labour.
(He was breech and at this moment in time I was a first time mum, believing what I had been told.)

We 'knew' from birth that our child was a little slow to develop, both physically and mentally.
Constantly behind on milestones, sitting, standing and walking.
Talking was also delayed - majorly.too.
I remember when he was 3 years old he was marked at 18 Months behind.
He also had large tonsils and his weight gain wasn't all that good either.
Constantly fighting for adequate weight gain and in April 2008 he had a tonsillectomy and his adenoids out too.
He was due to have grommets put in for 'glue ear' but at the time they did the operation, his ears were clear.
He was also born with a congenital defect called hypospadious - He had this corrected August 2009.
He took forever to toilet train due to a bowel problem.
We feel like we're hitting our heads against a brick wall where he is concerned. We've been telling them for years he hadn't had a proper solid bowel movement and his behaviour issues and only recently have they diagnosed him as having a intestine hurry condition - which is similar to IBS.
He is now on medication for this - But it's a LONG, Slow process.

Behaviour:
His behaviour can be quite variable.
He CAN be loving - but rarely.
If he says he loves me - it's a very special moment!
I can say it over and over and over to him 'I love you' and he will just ignore it - blank me.
He is now nearly 6 and still can not write his own name.
He is at school and does receive some level of support but I don't think it is enough.
(For instance, He is NOT confident in mark marking - He prefers to draw over already existing patterns, letters.)
His younger brother started school this year - He is 4 years old and he was so ready to start school, I just knew.
He is only a term into school and already can confidentially mark make and copy his Christian name!!!

My eldest (as described) also is a compulsive disorder of some kind - If you ask him to tidy, he has to do it 'til the very end - In perfect order and compulsive noise making - for instance it's almost like a raspberry sound I'd expect to hear from a baby - With a little voice behind it to make it a more boy bark I call it, lol - He pushes cars along and lorries and this noise sounds so frustrating for us to hear - But I guess this is his way of something.
We can ask him to stop it, and again, it's like he's off in a trance and we are not getting through to him.

We have approached several 'health professionals' about a diagnosis - I did originally think something along the lines of ADHD as sometimes his concentration can be out the window and into the distance - To be honest I don't know a lot of ASD's and would be grateful for ANY advice and information that anyone may have to guide us along to getting a diagnosis and more importantly - getting him the help he needs and deserves.
He has already been kept back a year at School.
post #2 of 29
Has he seen a developmental pediatrician and/or neurologist? If not, start there. Oh and does he have an IEP at school?
post #3 of 29
How's his language? Does he understand the things you say? Does he speak well?
post #4 of 29
Thread Starter 
Quote:
Originally Posted by by-the-lake View Post
Has he seen a developmental pediatrician and/or neurologist? If not, start there. Oh and does he have an IEP at school?
He does see a paediatrician for his weight / bowel problems but she isn't bothered or interested in his development!!!
What does IEP mean?

Thanks xx
post #5 of 29
Thread Starter 
Quote:
Originally Posted by fairejour View Post
How's his language? Does he understand the things you say? Does he speak well?
His language is okay - It's not great but it's come on a lot since last year.
He's now explaining things as best he can like for example - I need a wee, before I burst !! lol..
He understands what we say yes!

Another thing to mention
He does do that trance thing A LOT - walking home from school he can look into the sky for ages or behind him and BOOM he's walked into something, or someone!

Do we have any idea's if he is a special needs child and what it is he may have?

Thanks xx
post #6 of 29
Quote:
Originally Posted by BusyMumof5 View Post
He does see a paediatrician for his weight / bowel problems but she isn't bothered or interested in his development!!!
What does IEP mean?

Thanks xx
It sounds to me like you are not in the US, is that correct?

I ask about his language because a hearing issue can manifest in many different ways and it is easy and quick to rule out.

(IEP is a special education term in the US that allows for kids with special needs to get accomidations and help in school.)
post #7 of 29
Quote:
Originally Posted by BusyMumof5 View Post
He does see a paediatrician for his weight / bowel problems but she isn't bothered or interested in his development!!!
What does IEP mean?

Thanks xx
There are pediatricians who specialize just in child development called 'developmental pediatrician'. If there are none available to you, how about seeing a pediatric neurologist?
post #8 of 29
post #9 of 29
Quote:
Originally Posted by BusyMumof5 View Post
He does see a paediatrician for his weight / bowel problems but she isn't bothered or interested in his development!!!
What does IEP mean?

Thanks xx
What?! Then he needs another ped. And you would be savvy to report that one to the college of physicians and surgeons. Seriously. His development is important and if the physician is not addressing it, then they're not doing their job. Find a better one for him ASAP.

He does sound like he is exhibiting some traits that would be considered on the spectrum for ASD but I am no expert. I agree with the first responder that he needs to see a neurologist.
post #10 of 29
Thread Starter 
Quote:
Originally Posted by beachcomber View Post
What?! Then he needs another ped. And you would be savvy to report that one to the college of physicians and surgeons. Seriously. His development is important and if the physician is not addressing it, then they're not doing their job. Find a better one for him ASAP.

He does sound like he is exhibiting some traits that would be considered on the spectrum for ASD but I am no expert. I agree with the first responder that he needs to see a neuropsychologist.
Many thanks for all your replies!
I'm very new to this and I just don't know which kind of ASD he has!
I live in the UK - So will hunt around for a neuropsychologist too.
I hope I can finally get some answers and help xx

He has seen an 'educational phychologist' and again - she hasn't diagnosed anything and to be honest again, doesn't seem interested in doing anything!

Will keep you all up to date!!
post #11 of 29
I researched celiac disease when I found out I had a wheat sensitivity. Children with celiac often have trouble putting on weight and keeping it on and bowel issues. It also often goes with autism and adhd. If he has celiac, it's certainly only part of the problem, going by what you've described, but I wonder if it could be contributing. Have you tried eliminating potential allergens? Good luck!!!!
post #12 of 29
Mother's intuition is usually right. If you suspect that your son needs more support, you are probably correct. What the diagnosis is is a mystery that cannot be unravelled here.

My NT son has many similiarities to your son. He will be 8 next week. He is just starting to learn to read. Writing is very challenging for him. My autistic son could read and write at that age.

I share this so that you know that a few signs or characteristics may not indicate a developmental condition.

Children learn at different rates. I think this may be challenging since he is your oldest and you would expect him to be ahead of younger siblings.

My oldest was reading well at 4 yo. My youngest still does not read at that level.

It is important to allow for differences in development while being alert for the child's need for support and intervention.

If you believe that an evaluation and label would be beneficial for him, I hope that you are able to find doctors and educators who support you.

All the best to you.
post #13 of 29
Thread Starter 
Quote:
Originally Posted by nicky85 View Post
I researched celiac disease when I found out I had a wheat sensitivity. Children with celiac often have trouble putting on weight and keeping it on and bowel issues. It also often goes with autism and adhd. If he has celiac, it's certainly only part of the problem, going by what you've described, but I wonder if it could be contributing. Have you tried eliminating potential allergens? Good luck!!!!
Thanks so much - I will look into this!!!
At the moment he's been told to cut down (out) fibre - Hasn''t helped to be honest.

He is on daily medications now x2 (Imodium and Lactobacilis)
We had a fight on our hands to get lactobacillis prescribed! xx
post #14 of 29
Hi busymumof5. I live in the US now, but did live in the UK, my son had several of the same type behaviours yours is having, when I lived in the UK. It was very hard to get any help. As soon as I moved back to the US, my son was immediately helped. In saying that.........if the pediatrician you see is willing to not willing to refer him to a developmental pediatrician or hospital..your next step is to go to your GP and try to get a referral. I know how the NHS works. Where in the UK are you?(southwest, south, etc)

It does sound like your son has a mild form of pdd (pervasive developmental disorder----google this) this is what my son was diagnosed with at 3 and he had all of the similiar characteristics as yours. Even so, when my son started school it helped him tremendously with his language development. I know how frustrating it is to get help for such issues in the UK, I am sorry you are going through this.xx
post #15 of 29
Thread Starter 
Quote:
Originally Posted by NataliaI View Post
Mother's intuition is usually right. If you suspect that your son needs more support, you are probably correct. What the diagnosis is is a mystery that cannot be unravelled here.

My NT son has many similiarities to your son. He will be 8 next week. He is just starting to learn to read. Writing is very challenging for him. My autistic son could read and write at that age.

I share this so that you know that a few signs or characteristics may not indicate a developmental condition.

Children learn at different rates. I think this may be challenging since he is your oldest and you would expect him to be ahead of younger siblings.

My oldest was reading well at 4 yo. My youngest still does not read at that level.

It is important to allow for differences in development while being alert for the child's need for support and intervention.

If you believe that an evaluation and label would be beneficial for him, I hope that you are able to find doctors and educators who support you.

All the best to you.
Thanks - I must admit I wasn't too scared by his slow development I mean it's nothing new.
Since he's been kept back a year at School we had a parents evening and the teachers really put pressure on us to forward him into making development.
For instance - He is now working on the 2nd letter in his first name.
post #16 of 29
Also with the bowel thing, my son had this too until I finally cut dairy products out. Not saying that this is your childs problem, but my son did not have a solid bm until he was 3 1/2...when he finally toilet trained as well.
post #17 of 29
Thread Starter 
Quote:
Originally Posted by Strong Mama View Post
Hi busymumof5. I live in the US now, but did live in the UK, my son had several of the same type behaviours yours is having, when I lived in the UK. It was very hard to get any help. As soon as I moved back to the US, my son was immediately helped. In saying that.........if the pediatrician you see is willing to not willing to refer him to a developmental pediatrician or hospital..your next step is to go to your GP and try to get a referral. I know how the NHS works. Where in the UK are you?(southwest, south, etc)

It does sound like your son has a mild form of pdd (pervasive developmental disorder----google this) this is what my son was diagnosed with at 3 and he had all of the similiar characteristics as yours. Even so, when my son started school it helped him tremendously with his language development. I know how frustrating it is to get help for such issues in the UK, I am sorry you are going through this.xx

Bless you - Sounds like I need to move Countries!
It is VERY difficult in the UK for help - It feels like banging your head against a brick wall, everyone's just NOT interested and I feel horrible for knowing he needs more help but can't get him the help he needs!
He started school September 2009 and he has definatly improved whilst at school, and as your son, his language and talking skills have improved loads!

Thanks - will google that now hehe xx

(Oh, and I'm South West in the UK) xx
post #18 of 29
I lived in Wiltshire, beautiful place but absolute rubbish childrens services as far as development is concerned. Bristol has a fantastic childrens hospital, you may want to contact them and ask if they can direct you to a service available, some therapy of some kind or at least recommend a childrens neurologist to get you started in the right track. (hugs)
post #19 of 29
Thread Starter 
I've just found THIS about PDD.

Quote:
The pervasive developmental disorders are:
Pervasive developmental disorder not otherwise specified (PDD-NOS), which includes atypical autism (or is also called atypical autism), and is the most common;
Autism, the best-known;
Asperger syndrome;
Rett syndrome; and
Childhood disintegrative disorder (CDD).
^^ Does that mean (if he has PDD) that he has ALL of the above?

Quote:
Symptoms of PDD may include communication problems such as:
1) Difficulty using and understanding language
2) Difficulty relating to people, objects, and events; for example, lack of eye contact or pointing behavior
3) Unusual play with toys and other objects
4) Difficulty with changes in routine or familiar surroundings
5) Repetitive body movements or behavior patterns, such as hand flapping, hair twirling, foot tapping, or more complex movements
1) It's much improved to what it was - but still I think has a few issues
2) He is a pointer and usually even whilst walking looking into the sky and behind him
3) He likes playing with cars and is forever making a continuous noise (even when asked to stop, almost a compulsiveness)
4) He CAN find things quite hard - most recently I've found if he has been somewhere new he can be quite hyper until very late hours - almost on edge
5) Can this be the compulsive noise making whilst playing with cars?

This is all so new to me still - Thanks everyone xx
post #20 of 29
Thread Starter 
Quote:
Originally Posted by Strong Mama View Post
I lived in Wiltshire, beautiful place but absolute rubbish childrens services as far as development is concerned. Bristol has a fantastic childrens hospital, you may want to contact them and ask if they can direct you to a service available, some therapy of some kind or at least recommend a childrens neurologist to get you started in the right track. (hugs)
Strong Mama - Wiltshire is NOT far from us at all!
We've also been to Bristol Childrens' Hospital with him - It's where he had his hypospadious operation!
I also know from having a child with a serious heart defect how much the Bristol Children's hospital has helped us - I will definatly look into this as well as they were all so brilliant at the hospital xx
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