Jump to content

Has EB Ever Been The Very First Place...
...To raise the possibility of a specific issue?


  • Please log in to reply
30 replies to this topic

#1 baddmammajamma

Posted 17 January 2013 - 10:33 AM

A friend I know from EB (now part of my ASD mums network) was telling me that EB was the very first place that raised the possibility of ASD in her child -- before anyone from daycare had suggested it, before anyone from preschool/kinder had mentioned it, before her MCHN or GP had suggested it, before any of her family or friends had suggested it.

Just off the top of my head, I can think of instances when an EBer has gone on to investigate coeliacs or diabetes with their doctors or dyslexia with a teacher/learning support unit specifically because of something that another EBer (or several) has raised. And it turns out that the EBer was right on the money -- and was the very first person to ever raise the consideration.

I know that we are not supposed to dispense of medical advice -- that's not what I'm talking about here.

What I am wondering is -- Have you ever gone on to seek a professional opinion/assessment of something based on a seed that was first planted here on EB? It could have been someone saying "Hey, that sounds a lot like my daughter...have you ever considered asking your doctor about  xxxx?" or someone sharing an article or life experience that really struck a chord in you.

Just curious to see how many stories are out there!

#2 EsmeLennox

Posted 17 January 2013 - 10:37 AM

Yes, regarding anxiety in my older son. My experience was not really one of others telling me to seek advice, but that I should leave him alone, that there was nothing wrong with being an introvert (which there is not of course, but an anxious introvert is another issue). Although some posters did say that if I was concerned I should take him to see someone.

Anyway, I did take him to the GP and was referred and we sorted the anxiety issues. He's quite a different kid now, still introverted but can manage his anxiety well.

With my second son although not the first place I raised it, I listened to what EB'ers had to say (you in particular BMJ) and took him to a GP regarding his behavioural issues, although I had intended to anyway. This one is still in progress. The GP does not believe he has ADHD or that he is on the spectrum, but we are monitoring it closely and we've been working really hard with DS2 and on the whole there has been significant improvement. With him it seems to happen in 'waves' too. He will be a gorgeous kid for quite a while then a complete hell-cat. I do tend to think it is personality/spiritedness with him, but I haven't entirely ruled out other issues. At this point I am waiting to see how he settles in term 1 this year, and if the issues rear their head again I will be taking it further.

Edited by Jemstar, 17 January 2013 - 10:42 AM.


#3 lozoodle

Posted 17 January 2013 - 11:05 AM

It wouldn't have even occurred to me to look into the possibility of silent reflux with my first child unless it were for EB. I'm so glad I did, because the people I had been seeing were fobbing me off and saying it was just me not being able to settle her and making me feel like crap. I finally pushed the issue and saw a lovely new GP who got her onto some medication and the improvement was almost instant.

#4 baddmammajamma

Posted 17 January 2013 - 11:07 AM

Ferdinand, I think our group of ASD mums probably has a high rate of "ringing bells." Of course, it's all good if we can help someone get an appropriate assessment/diagnosis.

I forgot to give a shout out to Balzac, who is one of the most knowledgeable people about "all things poo" I have ever met. She was the very, very first person to suggest to me that my son's issues might be encopresis -- and she has been fabulous about suggesting good professionals to see (Balzac, we were able to score an appt with Dr. RJ here in Sydney). Thanks! original.gif

Edited by baddmammajamma, 17 January 2013 - 11:11 AM.


#5 Bendigedig

Posted 17 January 2013 - 11:16 AM

Because of EB, I kept raising the possibility DD had food intolerances and not just slack muscles for her very rounded belly (and in hindsight her constant wind and poor sleeping/being in pain as a baby). Finally a GP listened and DD and I were both diagnosed with Fructose intolerance - the change has been amazing (and my Mum also trialled the diet and the positive turn around in her medical issues is astounding).

I am now looking at if recent behavioural issues are related to preservative 282 (DD is now in childcare and they are giving her country life GF bread and we are now having issues at home) - again EB is the place where I read this could be a cause.

I find EB a great starting point for trying to solve issues/problems/working out how to do something - not just medical type things but also strategies for behaviour, sleeping, discipline (eg using redirect rather than screaming no), activities etc. I think I am a much better parent for it.

#6 Kismama

Posted 17 January 2013 - 11:25 AM

Yep... definitely EB research that led to an AS diagnosis for DD2 (and then myself!)

#7 Mercurial

Posted 17 January 2013 - 11:31 AM

Another shout out for Balzac - her advice in relation to my son's poo issues has been wonderful.  And it has encouraged me to keep pushing and pushing to get answers to help improve the quality of my son's life.  The time she has taken to PM me, research information, meet with me and generally answer hundreds of questions - it has been so nice to talk to someone who understands what this is all about.

#8 **Xena**

Posted 17 January 2013 - 11:44 AM

For me Night Terrors. I was in an absolute panic when my middle child had one and I had no idea what it was. I came on here and asked and some lovely EBers reassured me and gave me enough information that I could do some of my own reading.

Also not so much a diagnosis but EB was the first place I ever 'met' other people with anxiety. When I first got diagnosed I felt like a freak as no one else I knew had even heard of it (nor had I prior to diagnosis). EB made me feel like I wasn't alone or some mental **** up.

#9 JustBeige

Posted 17 January 2013 - 11:50 AM

Yes. Definitely. EB was the first place where I read actual parental feedback regarding using Fish Oil tabs for ASD.  DS has APD and some other behavioural 'quirks' and if not for EB (you and MadMother in particular) I wouldnt have looked at it as something to help my boy.


#10 namie

Posted 17 January 2013 - 11:56 AM

Deejie helped me identify red markings that appeared on DS1s face after eating. It didn't appear to be allergy-related but I wasn't sure and posted pics in the allergy section for advice.

She asked me if he had been delivered by forceps which she couldn't have known (he was) and suggested that he could have nerve damage from that - Auriculotemporal something-or-other, otherwise known as Frey's Syndrome.

We're still waiting to see a paed allergist as our first referral ran out before our appointment arrived and then it seemed he'd grown out of it, so I didn't follow up, but it has returned with different foods causing it, so we're off to see someone in June. Because it doesn't seem allergy-related we're not high priority enough to get in any sooner which is fine as he doesn't seem at all affected by it apart from the red markings.

If not for Deejie I don't know what my next step would have been. It is virtually impossible to make it occur in the doctors office, so I'd have had to take in photos and have them work of those. Thankfully I was able to take in some internet research, as well as photos, and go from there.

#11 brazen

Posted 17 January 2013 - 11:57 AM

yep, i'm not sure we would have got ryan's asperger diagnosis so quickly, or at all without eb original.gif

#12 ~Nodnol~

Posted 17 January 2013 - 12:01 PM

Yes. I read someone's post and "ding ding ding". It was my daughter all over.

I'd like to thank BMJ and Balzac- I have people irl telling me I am being ridiculous, there is nothing wrong with DD, why bother testing etc. But you both have been amazing support for me and have listened to my concerns and offered great advice.



#13 baddmammajamma

Posted 17 January 2013 - 02:57 PM

Thanks, Nodnol. I am only doing what others have helped do for me. Yes, those "ding ding" moments can be pretty powerful.

Do you guys remember the EBer who had the little girl who was drinking litres of water per day & was totally listless? The doctor wasn't overly concerned. Several EBers who have kids with diabetes urged the mum to go to a major city and get her daughter checked out -- the mum drove several hours to Adelaide...and it turns out the little girl does have diabetes. To me, that was one of those "Wow, potentially lifesaving" moments on EB.

#14 item

Posted 17 January 2013 - 03:07 PM

QUOTE (baddmammajamma @ 17/01/2013, 10:33 AM) <{POST_SNAPBACK}>
What I am wondering is -- Have you ever gone on to seek a professional opinion/assessment of something based on a seed that was first planted here on EB?


Yes.  I thought something was 'off' with DS from just before 18 months (I remember thinking before I took him to have his shots that something was already niggly) and was drawn, over and over again to BMJ's posts.  Hardly posting, I read all of them.  I couldn't have told you why, DS was still meeting all 'within norm' milestones in 'What To Expect In The Toddler Years', but he was increasingly massively ahead in some areas and slowly slipping behind in others.

For 6 months I read and read and read every post in the SN's section.  I began raising queries with DH, my parents, my friends, family day care.  No-one agreed with me that there was something not right.  I still didn't post on EB.  But I read.  

In the December, DS was 23 months, we had an orientation day for his his 2yo preschool class.  He was different to the other kids, wasn't playing in quite the same way.  The director caught my eye and I admitted I was a bit worried about him.  She said, don't worry, if it's autism or anything like that we'll help you through it.  Finally someone had put into words what I was worried about, could see the flags I saw.  

I came home and cried, PM'd BMJ, she called me (I knew she lived in the same area as me) and thank god, told me what to do next.  We managed to get a dev paed appointment the next week (I was pregnant with DD who had a serious cardiac defect, so I think some strings were pulled) and I informed my GP we would need a referral.  (He was happy to oblige but I knew from EB that GP's could be a stumbling block so I went in ready).  Sure enough, it was ASD (confirmed later by two more Dev paeds).

Anyway.  It's two years later, we've done 18 months of very intensive EI, DS's PDD-NOS dx is now subclinical.  And although there are anxiety and other issues and he will always be ASD-hardwired, he is able to cope with most things.  He will be told he has ASD, so he understands himself fully.  We have discovered I have Aspergers, DH is quite spectrummy, too, but doesn't feel any need to be dx'd.

Apart from helping our son, we have been able to tweak our entire lives to suit ourselves (now that we understand ourselves! LOL), instead of never quite understanding why things seemed a bit more difficult for us.

I suppose it never occurred to me that EB was helpful, I just put it all down to BMJ Tounge1.gif, but it was many posts and links over a long time that had me researching and asking the 'right' questions.  Thanks everyone original.gif

#15 item

Posted 17 January 2013 - 03:11 PM

QUOTE (baddmammajamma @ 17/01/2013, 02:57 PM) <{POST_SNAPBACK}>
Do you guys remember the EBer who had the little girl who was drinking litres of water per day & was totally listless? The doctor wasn't overly concerned. Several EBers who have kids with diabetes urged the mum to go to a major city and get her daughter checked out -- the mum drove several hours to Adelaide...and it turns out the little girl does have diabetes. To me, that was one of those "Wow, potentially lifesaving" moments on EB.


On this, I have also had DS's blood sugar etc checked out once when his H2O intake increased dramatically.  All was well, but I knew about the signs/risks from EB.

#16 TeaTimeTreat

Posted 17 January 2013 - 03:22 PM

Yes, Balzac mentioned a couple of times (in different threads) that a child who is consistently below the third percentile needs to be reviewed by a paediatric endocrinologist. This was not long after yet another general paed had dismissed my concerns about DS growth.

Her advice gave me the impetus to push for an appointment with a paediatric endo and we are seeing him next week, in the meantime I have discovered that DS qualifies for the Dept of Health and Aging Growth Hormone program which I did not think of looking into before either.

Now I feel like we are finally getting somewhere.

We should send her some wine or something  biggrin.gif .

#17 Maple Leaf

Posted 17 January 2013 - 03:51 PM

QUOTE (baddmammajamma @ 17/01/2013, 02:57 PM) <{POST_SNAPBACK}>
Thanks, Nodnol. I am only doing what others have helped do for me. Yes, those "ding ding" moments can be pretty powerful.

Do you guys remember the EBer who had the little girl who was drinking litres of water per day & was totally listless? The doctor wasn't overly concerned. Several EBers who have kids with diabetes urged the mum to go to a major city and get her daughter checked out -- the mum drove several hours to Adelaide...and it turns out the little girl does have diabetes. To me, that was one of those "Wow, potentially lifesaving" moments on EB.


Yes I remember this situation. Maybe the mum could come back and update about how her daughter is doing now??

That was such a scary time reading the posts and hoping she was actually being listened to. She was fobbed off initially from what I recall.

I wish someone had more first hand information and knowledge about dyscalculia. sad.gif I'm struggling so badly to find anyone that knows exactly how to teach kids with it and it seems that everyone on the net is a scam to charge $100's of dollars for 'online testing', it seems to be more well- known in the states but not so much here yet.
At such a loss right now.
Really wanted to have a bit of a game plan before DD1 starts Year 3. sad.gif

Edited by Maple Leaf, 17 January 2013 - 03:52 PM.


#18 baddmammajamma

Posted 17 January 2013 - 04:01 PM

QUOTE (Maple Leaf @ 17/01/2013, 04:51 PM) <{POST_SNAPBACK}>
Yes I remember this situation. Maybe the mum could come back and update about how her daughter is doing now??

That was such a scary time reading the posts and hoping she was actually being listened to. She was fobbed off initially from what I recall.

I wish someone had more first hand information and knowledge about dyscalculia. sad.gif I'm struggling so badly to find anyone that knows exactly how to teach kids with it and it seems that everyone on the net is a scam to charge $100's of dollars for 'online testing', it seems to be more well- known in the states but not so much here yet.
At such a loss right now.
Really wanted to have a bit of a game plan before DD1 starts Year 3. sad.gif


The mum did come back -- a few months ago in one of those "What ever happened to?" threads. Her daughter had been dx'ed with diabetes and is (or was when she reported) doing well!

Re dyscalculia...would you mind PMing me where you are? I have an awesome online network of parents of 2e kids & professionals who work in that space (incl. some very well regarded clinical, educational & developmental psychs). I wonder if someone in that network might be able to help??

#19 Acidulous Osprey

Posted 17 January 2013 - 04:03 PM

Awwwwwwww, I'm feeling all shy now.

Maple Leaf, PM me as well--I have a feeling you are close to me.  What sort of remediation are you looking for?

#20 Maple Leaf

Posted 17 January 2013 - 05:00 PM

Thanks, will send those PM's. original.gif


#21 barrington

Posted 17 January 2013 - 05:26 PM

Yes, thanks to a link in a thread by BMJ about giftedness and ASD/ADHD we have an initial appointment with a developmental paed in two weeks time.  Without that thread, I doubt we would have taken his mild 'quirks' as being something to look into further.

The link also made DH realise that he also probably has ADHD.


#22 Feral_Pooks

Posted 17 January 2013 - 06:00 PM

Yes.

This thread http://www.essentialbaby.com.au/forums/ind...howtopic=972592 made realise DS had reflux.

And EB was the first place someone suggested I had PND I thought previously I was just a sh*t mum.

#23 baddmammajamma

Posted 17 January 2013 - 06:25 PM

QUOTE (Pooks_ @ 17/01/2013, 07:00 PM) <{POST_SNAPBACK}>
Yes.

This thread http://www.essentialbaby.com.au/forums/ind...howtopic=972592 made realise DS had reflux.


What a great, supportive thread (and big props to Ianthe for getting the "Check with your doctor" ball rolling). Hope your little guy is happier now that you know what the issue is.

#24 twin2

Posted 17 January 2013 - 06:41 PM

I have picked up a few things from EB over the years. I have never posted before but am always reading the ASD threads.

From another member's post I realised why my son was head thumping due to sensory seeking . After reading BMJ;s constant reminders of "if in doubt check it out" I demanded my children's ENT give us a referral for speech despite him being adament at 2.5 they would "catch up" (amoung many other things we have done for the kids in the last few years)

So thank you all for sharing your stories as it has really helped me--BMJ you particuarly have been a life-saver for me and my children



#25 sparassidae

Posted 17 January 2013 - 07:39 PM

I wouldn't have known what a tracheal tug was except for EB. It meant last year when DH called me into DD's room with a "does this look right?" I knew exactly what I was seeing and we rushed her off to the Dr.




1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users

 

What not to say to a new mum

Some phrases just pop out before you really think about them, but there are some things you should try to not say to a new mum.

Why I'm glad to be an indulgent granny

The phone calls started a couple of weeks ago. At about 5.30 each evening - if I am lucky - I will be greeted by a sweet, excited voice declaring: "'Allo Annie".

Is this the worst relationship advice ever published?

You sometimes have to wonder whether relationship/sex advice from magazines is designed to help or humiliate.

How you talk to your baby now can impact social skills later

People used to think that social skills were something kids were born with, not taught.

Three truths about C-section mums

Lately I've been thinking about the caesarean stories and the brave women who birth their children with strength and beauty.

Scientists predict when you should start a family

Scientists have calculated at exactly what age you need to start trying to get pregnant to have the best chance of realising your dream. 

Differently abled child

When 'protecting' a child is really a cover for judgement

Why are people so concerned for this happy child and his mother?

When toddlers have strange obsessions

When it comes to two-year-olds and birthday cakes there are a few requests that are usually at the top of the list. But a cake featuring a local personal injury lawyer?

When Mama Bear strikes

When we become mums, our instinct to protect our children and keep them safe from harm is so strong we're often likened to a Mama Bear protecting her cubs.  

Immunity boosters for kids

There are no guaranteed ways to avoid the dreaded winter illnesses completely, but there are ways we can boost our children's immunity.

Mum shares portrait of her proudly breastfeeding three-year-old

Jade Beall usually chooses to breastfeed her son, now 3, in private. This week, however, she shared portraits of her breastfeeding her preschooler.

Dealing with a toddler's morning tantrums

Your schedule is not important to your two-year-old, and you cannot convince her otherwise. So what can you do?

Child in suitcase 'could have died eight years ago'

A child whose remains were dumped in a suitcase in the South Australian bush is believed to have been a girl aged between two-and-a-half to four.

MP breastfeeds baby during parliamentary session

An Argentinian mum and politician has caused a stir on social media after being filmed breastfeeding her baby.

My baby's first seizure

It was 1am on a cold winter's night when I woke suddenly to the screams of my 12-month-old son. Our lives were about to change forever.

Portable pools 'more dangerous than permanent ones'

Inflatable and portable children's pools may be required to be sold with compulsory fencing to prevent backyard drownings, with some experts even floating the idea of a ban.

Heartbreaking moment mum kisses her one-week-old goodbye

At 11.07am on April 2 this year, Sarah Marriott welcomed baby Sebastian into the world.

The amazing Tee Pee bed and kid-friendly Frankie Bunk bed

These kids' beds definitely fit the brief of providing personality and personal space for little people who are moving up in the world.

The funny things kids say when you're pregnant

Since becoming noticeably pregnant, my son has taken more of an interest in the sibling he'll soon have.

The real problem with having one child

In this age of political correctness, it seems the one subject still subject to discrimination is that of the Only Child.

Six-week-old baby found dead, believed stabbed

A neighbour heard a child screaming before a baby was found dead, believed to have been stabbed, in a house in Newcastle.

The fire hazard in more than 70,000 Australian homes

So far, 206 Samsung washing machines have caught fire and some have exploded. But many remain in people's homes.

How having a baby can bring on OCD

We all know that having a baby can turn your life upside down - and it can also bring a raft of new anxieties and worries.

IVF gender selection being considered for Australian parents

Couples using IVF may be able to choose the gender of their babies and women could be financially compensated for donating their eggs.

The best age to get married (according to the latest study)

Not too young, and not too old. That's reportedly the best age to get married. Not everyone agrees.

Get your FREE Baby & Toddler Show ticket!

Get your free ticket to the Sydney Essential Baby & Toddler Show for September 25-27 - register online now.

 
Advertisement
 
Advertisement
 
 
 

What's hot on EB

Yes, you can get pregnant before your period returns post-baby

After giving birth, the last thing you want to think about is contraception. But you can get pregnant before your period comes back.

Fellow diner rewards mum after toddler's tantrum

Parents of toddlers everywhere know the feeling. After working up the courage to take your child out for lunch or dinner in public you are rewarded with a mid-meal meltdown. 

IKEA begins massive safety campaign after two toddler deaths

Two children were killed when pieces from their Malm furniture line tipped over.

Which beauty treatments are safe in pregnancy?

Is it safe to use fake tan, hair dye and nail varnish during pregnancy?

A dad's guide to hyperemesis

I am in no way qualified to advise women on how to cope with hyperemesis, but I've learnt some lessons that might be worth sharing with other partners.

The five ways I know my 'baby' is no longer a baby

The truth is, I can no longer deny that my walking, babbling, somewhat-independent little miss is no longer a bona fide 'baby'.

Woman adopts best friend's four daughters after cancer tragedy

Best friends share everything - and for these two life-long friends, that includes family.

Beaneasy: sweet nursery furniture with a twist

If you're looking to introduce an organic element into your baby's nursery but want to step away from natural timber, we have the perfect alternative.

Confirmed: men gain weight when they become dads

Men who become fathers experience weight gain and an increase in body mass index, a measurement of body fat based on height and weight, according to a new, large-scale study

Carer investigated over washing machine photo posted 'for a laugh'

She said the photo of a boy with Down syndrome in a washing machine was taken just for fun, but no one else was laughing.

The day my son started a fire

Would you know what to do in a fire emergency? How safe is your home and family?

Mum's premature labour nightmare after high tea salmonella outbreak

An opulent high tea at a luxury Melbourne hotel has left 44 people with salmonella poisoning - including a pregnant woman, who went into early labour.

The science of 'hangry': why some people get grumpy when hungry

Where does hanger come from? And why is it that only some people seem to get hangry?

What a baby with whooping cough sounds like

It's a heartbreaking video that anyone who has ever considered not vaccinating against whooping cough must see.

Couple's million dollar bill for premmie baby born on holiday

An Australian couple could face a medical expenses of more than $1 million after their baby boy was born three months prematurely while they were holidaying in Hawaii.

Coffee a day to keep disease at bay

Don't be surprised if your morning brew does more than wake you up. There's more to this magical elixir than you might think.

Why Prince George has 'two different looks'

Days out from Prince George's second birthday, his parents' tendency to dress him in classical style clothing has been revealed as a cunning ploy.

Husband films mum giving birth in moving car on freeway

An incredible birth video shows a mother delivering her own baby as her husband drives along a freeway in a vain attempt to reach hospital.

Breastfeeding while pregnant: is it safe?

Many women happily breastfeed well into pregnancy while others wean sooner; yet others continue to breastfeed both infants together. This is a personal choice.

Womb to world: transitioning your new baby

One minute they're contentedly snuggled in the sanctuary of their mum's tummy, and the next they arrive into an overwhelming reality of lights, cameras and action.

Gadgets

iSperm: the iPad home fertility test for men

A new gadget uses a tiny microscope and the camera on an iPad to calculate sperm count and motility.

The tiny twins who were strong from the start

I cried when a specialist told me at exactly 28 weeks that our twin boys would have to be born within 48 hours.

One day when I didn't know

Julia Watson, a mum of four young girls, was diagnosed with stage 4 bowel cancer in December 2013. She shares her latest blog piece with Essential Baby. 

 

FREE TICKET

See Pinky McKay live in Sydney

Get your free ticket to The Essential Baby & Toddler Show and save $20 - register online now!

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.