[baddmammajamma]

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!

[Jemstar]

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.

This post has been edited by Jemstar: 17/01/2013, 10:42 AM

[lozoodle]

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.

[baddmammajamma]

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!

This post has been edited by baddmammajamma: 17/01/2013, 11:11 AM

[JoIsMe]

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.

[Kismama]

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

[Mercurial]

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.

[**Xena**]

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.

[JustBeige]

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.

[namie]

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.