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Low PAPP-A long term effects

14 replies

JS711 · 19/08/2021 20:24

Hi.

Quick question. I can go into detail if needed.

Has anyone got a child 5 and over who has is autistic/has ADHD and was told they had low PAPP-A when pregnant with them?

I'm wondering what the long term effects are of low PAPP-A and if it's linked to autism. I am struggling to find a definitive answer online, just a few study papers and the odd comment replying to an unrelated post.

I had low PAPP-A and placental insufficiency. Managed to go to 41 weeks and was induced. Developed sepsis and nearly didn't make it. Our son was kept in (with me) for a week and they suspected meningitis. He had a lumbar puncture at a day old. He was on IV antibiotics for 2 weeks and luckily all was fine. But in the last 2 years his behaviour has deteriorated. He doesn't sleep. Is behind at school. Can't/won't learn to ride a bike, swim etc. Refuses to do anything that involves any effort. Explodes with rage etc. It's exhausting.

My husband is autistic and I have a nervous system disease. So I am pretty much at my limit. I need help. And I'm not sure if taking it from this angle will get someone to listen to me.

Thanks.

OP posts:
IncessantNameChanger · 19/08/2021 20:28

Two of my children have ASD. I had pre eclampsia with my first and he is supposedly neurotypical.

Looking at my family I think genetics play a large part.

JS711 · 19/08/2021 20:31

@IncessantNameChanger

Two of my children have ASD. I had pre eclampsia with my first and he is supposedly neurotypical.

Looking at my family I think genetics play a large part.

Thank you. My husband is autistic. He and my son are like clones of eachother in every way. Except my husband isn't constantly angry and smashing the place up 😞 my son is 7 and he has the strength of a fully grown man.

I expect it was going to happen regardless of the pregnancy issues but I'm wondering if this hasn't helped.

OP posts:
itsgettingwierd · 19/08/2021 20:47

I cant answer about the placenta stuff but my da dads half brother has autism and so does my ds.

However my ds also has a genetic condition that causes physical disability.

I've been told there was a risk of autism anyway due to his father (him and brother share the same dad) but also it's likely the autism is linked to the genetic condition too as it's neurological.

I think it's one of those things that still very poorly understood as the the nature and cause but I certainly think it's worth looking into these things and data being collected.

JS711 · 19/08/2021 20:59

@itsgettingwierd

I cant answer about the placenta stuff but my da dads half brother has autism and so does my ds.

However my ds also has a genetic condition that causes physical disability.

I've been told there was a risk of autism anyway due to his father (him and brother share the same dad) but also it's likely the autism is linked to the genetic condition too as it's neurological.

I think it's one of those things that still very poorly understood as the the nature and cause but I certainly think it's worth looking into these things and data being collected.

Thank you. Definitely something to look into. I'm just desperate to get someone to listen to me and get me some help. The school SENCO is lovely but no one had any urgency. But I'm at my limit and need something to change. I'm thinking if I make the pregnancy and birth issues clear, they might pay attention? Unlikely but I feel like I need to do something to save my sanity
OP posts:
IncessantNameChanger · 19/08/2021 22:29

Are you in England? You need to go via your gp - school can be a nightmare for getting help. Help costs the school so they want to guard their budget.

I think it varies county to county but where I live ASD is diagnosed via pediatricians before five. After five you have the joy of camhs which are beyound useless. The wait in my county is two year plus. Luckily, as my county is so, so useless they are outsourcing ASD diagnosis and my dd was diagnosed recently within 6 months. For that you can self refer but best to go via your gp. Gp is the first point of call. Your not asking the gp for a diagnosis, you want the referal. If they say school can refer be very firm as you can then ping pong back and fourth.

Also look at the ipsea website
www.ipsea.org.uk/

And SOSSEN
www.sossen.org.uk/

You should also Google parent partnership for your county. It's not called paret partnership any more here but Google will still get you the right website. They are in county independents who can talk directly to school and la about SEN education issues on your behalf. Again here they are under extreme pressure due to funding cuts.

Last option is your school home link worker.

But essentially you have two problems here

  1. school taking you seriously
  2. getting a diagnosis

You need to attack both at the same time. It's really not easy. These things where cut to bone pre covid. But the sooner your on waiting list the better

IncessantNameChanger · 19/08/2021 22:33

Also know one knows what causes ASD. It seems like its many factors. But many condition overlap and it might not be ASD. I thought one of my sons had ASD but its dyspraxia. However in reality I think all four of my kids have ASD. Two are diagnosed. Two are very close to the cut off score. In fact my dd was just over the borderline score as well so another paediatrician might have said borderline and not diagnosed her, but she is school refusing so I think they saw the diagnosis would benefit her getting the right support

IncessantNameChanger · 19/08/2021 22:34

Sorry for my spelling of no one I'm dyslexic

Bewildered2021 · 19/08/2021 22:55

I had low Papp A with my third pregnancy. My daughter isn’t autistic but her sister is.

OrangeBlossomsinthesun · 19/08/2021 23:01

I had low PAPP A with my son (now 13). He was born at 36 weeks and was small for dates but then caught up physically. I've always wondered a bit about the Papp A and low birth weight as he spoke late and struggles a bit with bilingualism (we live abroad). He was also quite clumsy and uncoordinated when younger and has always struggled academically a bit, but there's very little about it really.
He's doing quite well now but I did wonder about dsypraxia at one stage.

JS711 · 20/08/2021 15:05

@IncessantNameChanger

Are you in England? You need to go via your gp - school can be a nightmare for getting help. Help costs the school so they want to guard their budget.

I think it varies county to county but where I live ASD is diagnosed via pediatricians before five. After five you have the joy of camhs which are beyound useless. The wait in my county is two year plus. Luckily, as my county is so, so useless they are outsourcing ASD diagnosis and my dd was diagnosed recently within 6 months. For that you can self refer but best to go via your gp. Gp is the first point of call. Your not asking the gp for a diagnosis, you want the referal. If they say school can refer be very firm as you can then ping pong back and fourth.

Also look at the ipsea website
www.ipsea.org.uk/

And SOSSEN
www.sossen.org.uk/

You should also Google parent partnership for your county. It's not called paret partnership any more here but Google will still get you the right website. They are in county independents who can talk directly to school and la about SEN education issues on your behalf. Again here they are under extreme pressure due to funding cuts.

Last option is your school home link worker.

But essentially you have two problems here

  1. school taking you seriously
  2. getting a diagnosis

You need to attack both at the same time. It's really not easy. These things where cut to bone pre covid. But the sooner your on waiting list the better

Yeah in England. I contacted the GP first. Our surgery has nearly closed a couple of times due to poor staff retention and basic unacceptable wait times etc. I pretty much had the door shut in my face instantly and was told without a report from the school, no referral. Schools opinion is to get as much evidence to back up the referral as so many are rejected. I'm even being told I need to go on a parenting course to 'show I am making an effort' which pissed me off.

I'll take a look at those websites. Thank you

OP posts:
cbgarey311 · 10/10/2021 03:17

I had low papp-a during my 3rd and last pregnancy with my son. I was induced on his due date, and he had a traumatic birth. The cord was wrapped around his neck and he was blue. Fortunately, his Apgar scores were normal after a few minutes.
He is now 5 and has global developmental delay, and was diagnosed with Autism. He just turned 5 but is the size and development of a 3 1/2-4 year old (except for academics that don't require reading or writing like math. He's advanced there, and problem solving as well)
I have wondered myself if there's a connection between the low papp-a and his delays. I had my son tested by a geneticist and they found he has a gene deletion (prrt2) and a gene mutation (unknown). The mutation has been linked to autism.

AthenaBasil · 11/07/2024 10:44

@JS711 Hope you’re doing better now with your child. I know this post is quite old but it came up in my search. Did you make any progress? My first child is very delayed in speech and likely going to be diagnosed with something. He had low Papp-a and I do wonder if there’s any connection too.

jo55iemum · 15/09/2024 10:55

@AthenaBasil My son now 4 also had low papp-A. He is now diagnosed autistic. He was also speech delayed but his speech is now developing.

I too am curious if low papp-a could possibly be linked with developmental delays or autism as there seems to be a trend

OrangeBlossomsinthesun · 15/09/2024 10:59

OrangeBlossomsinthesun · 19/08/2021 23:01

I had low PAPP A with my son (now 13). He was born at 36 weeks and was small for dates but then caught up physically. I've always wondered a bit about the Papp A and low birth weight as he spoke late and struggles a bit with bilingualism (we live abroad). He was also quite clumsy and uncoordinated when younger and has always struggled academically a bit, but there's very little about it really.
He's doing quite well now but I did wonder about dsypraxia at one stage.

This popped up on threads I am on and I thought I would update to say DS was diagnosed with inattentive ADHD about a year after my post. He's 16 now.

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