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


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#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 FeralEsme

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 Feral_Is_Me

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 Feral Nicety

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.




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