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Why does my DS have so many health issues.

8 replies

adrianna22 · 18/04/2014 00:57

I believe I am at breaking point.....

My DS is saying 10 words....10 BLOODY WORDS AT THE AGE OF FOUR!

Recent diagnosis of Autism spectrum disorder and learning difficulties..

Plus found out on wednesday that my son has very large tonsils and adenoids, has been refereed to ENT after complaining about my DS who randomly stops breathing at night and told this is due to sleep apnea.

On top of that the doctor referred my DS to see a neurologist about an MRI SCAN! because my DS still has his fontanelle soft spot, which is quite deep but not noticeable on his head until you feel it.....

I do not know what to do...I have so many things to work out... I do not want my DS to go through an operation.... I was concerned when he was about three about his fontanelle spot..but was reassured that this closes up when a child is 6.

My DS has been through so many tests and exams, I do not want him to feel like a guinea pig. I've got schools, statements, working on his severe delay in language etc etc to go through and now this!!

MY DS other family are pressuring me not to take my DS to ENT and MRI, because he has been through so much

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StarlightMcKenzie · 18/04/2014 08:52

My dd (NT) had her to sims and adenoids out. It was fine.

Tbh sleep apnea is associated with cognitive delay and sorting it is associated with catching up somewhat. It isn't an operation I woukd delay.

Kids that age go through millions of brand new experiences. The difference between a good one and a scary one is how their parents react and preparation.

DS and DD trust me and I explain everything. If tell the nurse and everyone around us that we'll be doing things my way and slowly. I ask for catheters, bandages, masks to play with beforehand whilst we are waiting and request an earlier slot due to need. I tell the kids we'll make a picture diary to show Nan and snap away, showing them the pictures as we go. It takes the edge off and increases the smiles.

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PolterGoose · 18/04/2014 09:06

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adrianna22 · 18/04/2014 12:19

@Poltergoose- but it would not cause his severe language delay......would it?

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PolterGoose · 18/04/2014 12:31

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adrianna22 · 18/04/2014 14:16

@poltergoose- What do you mean by IMHO?

  • I know my DS has a lisp, which has not been confirmed, but the NHS salt don't look out for tongue tie?


  • His had is hearing checked, which is ok...but has not been looked at for glue ear...


  • It's funny you said that, because my Dr rolled his eyes when I told him about my son being diagnosed with autism and was annoyed that they did not thoroughly check him..because his fontanelle has not fully joined, which the doctor said he needs an MRI scan to check if everything is ok...
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PolterGoose · 18/04/2014 14:23

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adrianna22 · 18/04/2014 14:32

Thanks Smile.

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MyFabulousBoys · 18/04/2014 16:52

Sleep apnoea shouldn't be ignored, if his tonsils are constantly enlarged (infected?) then it isn't good for his general health anyway. If he is always having poor quality sleep then it won't help his cognitive function. It certainly doesn't help mine!

An MRI won't hurt him. Do the hospital have an autism nurse specialist? Could they liaise with MRI and help make it as least traumatic as possible? What about light sedation? Would they consider that?

Also, family and friends, as well meaning as they maybe, aren't always the best people to listen to. We are about to trial meds on our son with ADHD. I briefly mentioned this to my DM and she (educated scientist) said "oh no you mustn't do that, that is a terrible thing to do". Me:"why?" Her: "Don't know. It just isn't a good idea to give medicines to children".

Sigh.

She meant well but it didn't help.

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