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the endless dx possibilities

(5 Posts)
arielmanto Wed 17-May-17 11:29:23

Do you ever feel like you've fallen down the rabbithole?! Our DD is totally gorgeous and very well settled with us, has official diagnosis of GDD and "some muscle tone issues" as yet unspecificed. Aged 18 mos. She had plagiocephaly - flat head - so we took her to a cranial osteopath to get it manipulated back into shape. As we didn't have her living with us until she was 6 months old, it's taken longer than usual. I understand most flat headed LOs get it sorted within the first months of life when everything is very soft and pliable. Anyway, it means her osteopath has seen her develop over the last year. This woman is EDUCATED. Passionate about it in a way that the NHS Drs we have encountered with LO are not. ( Probably because she's making a fortune and they're not. )
She was the first person to look us in the eye and say that LO has facial features of FAS. 6 months later the paediatrician agrees. She spotted some hip issues that were later verified by our physio. So in short, I trust her. She mentioned earlier this year that as LO was not yet crawling aged 13 mos, she suspected some retained primitve reflexes. We "broke" the ANTR reflex with her guidance (just some physical exercises that LO enjoyed) and baby did start crawling soon after. Arguably, she would have anyway, I don't know.
I recently noticed someone mentioning retained Moro reflexes on AUK. Reading into this was a lightbulb moment. LO has the most peculiar reactions to being startled, and is startled by all sorts of strange things. She spreads her arms and moves wildly from side to side/falls over. If you're holding her at the time it's like holding a bag of snakes. She also has v sensitive eyes (to light) which wander all over the place when she's not focussed.
So now I am thinking who- and how - do I talk to about this without sounding bonkers?
Theory is that is she retains Moro into adulthood then she may be easily distracted, find it hard to focus in school .. blah blah blah - the FASD is going to manifest like this anyway, so how can I be sure it's anything to do with Moro? Or it could just be a learning disability inherited from BP. She could just be super behind. She's not yet walking.
I feel like any alleyway I go down could be something I should help her with! And that I could be missing out on some obscure neurological tips that would really help her out! I could go on like this forever, or I could say "f*ck it" and ignore the lot and just raise her with love and understanding and no Dx at all!
I suppose I just wonder if anyone feels the same way? I want to help her as much as I can but it's like I can't see the wood for the trees.
And we're thinking about trying for a second LO. HAHAHHA.

B1rdonawire Wed 17-May-17 11:57:07

flowers loads to hold in your head. A couple of very initial thoughts:

- what would be different, if you knew specifically X was due to condition Y or condition Z? If it would make a dramatic impact on how you treated it, I would push to find out via the paediatrician and any other appropriate referrals. If, in real terms, condition Y and condition Z would mean the same therapies/support/treatment, I don't know how far I would push at this very early stage.
- It's early, and so much is going to be genuinely impossible to diagnose yet. People will not be being deliberately obstructive - "wait and see" might actually be the only thing they can recommend, because they couldn't in all conscience diagnose condition A, when 12 months later actually that was ruled out due to the development in that time - they could have put you through all the strain of adjusting to condition A for no reason, if you see what I mean?

Our LO has multiple diagnoses, some of which are new, some are emerging, and we've also managed to have 2 removed this year that were diagnosed with reasonable medical certainty at 0-12 months, and now 5 years later turn out to not be the case any more. It's a headf*ck (although obviously thrilled to lose some conditions!).

One thing I've recently started doing that's helping me is writing it all down. I've become a bullet journal addict, but use any notebook or file or spreadsheet - whatever you're drawn to. I started doing it because I was terrified I would forget something critical or miss a pattern/connection that would have helped LO. It's been useful for that, but I've also found I am far less stressed about it now I'm not holding it all in my head all the time.

Take care of yourself, you can only do your best for your DD when you're nurturing yourself as well smile

arielmanto Wed 17-May-17 13:09:38

Thank you b1rd smile It's such a cliche to say it helps to talk to people who have been through the same stuff, but it is so true.
I think i do have to start writing it down, she is such a list of symptoms and irregularities and medical bits that I am also scared I'll forget something! When all her appointments start with "So tell me about LO" and you have to reel them off, I always forget something.
Will plod on with her standard paediatrician (quarterly at present) and see how she grows. So pleased for your LO ditching some of those diagnoses!

feigningsane Fri 19-May-17 12:02:03

Did you talk to your osteopath about what you are thinking about the moro reflex? I wasn't sure if I missed that in your post. If not, she would be a good place to start as it may give her further insight in relation to your dc generally and she may be able to recommend a doctor.

I would like to say, by the way, how lovely it is to read the care you are taking, and the lengths you are going to.

In relation to your praise of the osteopath, a world renowned psychiatrist has recommended cranial osteopathy as a therapy for trauma, ie neurological issues.

One of my dc had muscle weakness, in relation to gross motor skills not fine motor skills, and by about 20 months was visibly frustrated at their own inability to walk. They only just met milestones.

When I looked at therapy for neurological issues affecting gross motor skills (dc was 12 months at the time) I found it was massage, nutrition, exercise. I was very determined to do all I could, and cooked up different nutritious stews every day and mashed them to make it easier to eat. Once they started walking I started taking them to gym and the playarea, long walks, lots and lots of encouragement (aka bribery).

At 3 they found it hard to climb above 2 ft and jump but after 3 cranial osteopathy sessions they were able to climb the 4ft bench and jump onto the soft mat. Gym teacher was very pleased, I was so happy I had tears in my eyes!

They are now fine, strong and agile. I also don't know if what i did made a difference, though I don't care either, so very glad I did it.

I also found out as much as I could about brain development. More information about this should be given out to parents as standard. The brain is hardly formed at all at birth, and develops apace, something like 80 percent developed at 3 and more fully developed, but still capable of changing, at 6. The sort of stimulation provided in the early years will affect the intelligence, the emotional stability, how interesting they are, character, etc etc. I also found Montessori - Maria Montessori was the first female doctor in Italy, in the early 20th c. Once qualified she set up a school for children with learning disabilities (referred to as retards), and she found with her techniques and equipment which she designed that the children could reach the same standards as the NT children or exceed them. She was very critical of formal education at that time.

arielmanto Fri 19-May-17 20:52:47

Thank you so much for that reply feigning, I've just read it aloud to my DP. We have clocked a local Montessori nursery so once we're comfortable leaving her we will endeavour to get her in there. The neurological side of things is fascinating and again has been discussed by our fab Cranial Osteopath, who has shown us tricks like touching a vibrating tuning fork to pulse points and letting her sniff all the spices ..

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