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How do you cope?

(10 Posts)
Georgebooboo Sat 27-Jul-13 09:26:25

Hello, I posted last week about my nine month old little boy who is described as floppy. He can roll onto his front and tries to crawl but hasn't quite got there. He isn't sitting yet although he is fine in his bumbo and isn't weight baring. His fine motor skills are fine, babbling, picking up and has no problem eating. So I was referred to a specialist who I saw yesterday. My little one had, had bloods taken in the week and the results so far are negative . Apparently that means he doesn't have any form of serious muscular dystrophy. When she saw him yesterday she said his eyelids were a big droopy and his pallet a little high( really I can't see anything but maybe that's just me ) she was lovely but said its going to be a long process of eliminating what it isn't , and the next things they are testing for take two months for the results! I'm a mess, how do I manage for two months its sending me in sane already!! And I've already diagnosed him with the worst condition and can't stop crying!! Can anyone who has been through this please tell me his they coped without going in sane?? X

PolterGoose Sat 27-Jul-13 09:53:19

Oh George (((hugs))) please stop googling

I'm sure it's really hard for you sad and I've not had to deal with anything like that, and it is fine to be sad and worried, because you love and care for him and want the best. Can i ask, is he happy and pain-free?

George it IS hard waiting for test results and just wanting an answer. I've been there many times with my DS (now 2).

Have you heard of SWAN UK? It's a charity supporting families of undiagnosed children. We have a Facebook group that is very supportive, you can request to join. I have found it a complete lifeline while in limbo because everyone is going through, or has been through, the same thing.

I know how tempting it is to Google. Lots of people will tell you not to but I found overall it helped. To get my head round how I might cope it DS does have one of the scarier conditions but also to educate myself so I could ask sensible questions to health professionals and to feel a bit more in control.

Your little one sounds like he is doing well if he is eating well and making attempts to get mobile.

Is the 2 month wait for a CGH array by any chance? I remember the wait for that and it was excrutiating!

Stop googling now. You will drive yourself nuts, convince yourself it's something terrible and make yourself horribly depressed. Trust me I know.. I did the LOT!
Also..sometimes there AREN'T answers. Nearly 50% children don't ever get a diagnosis (according to my son's Paediatrician). Sometimes you have to wait and see, watch and wait, being pro active in enlisting support (physio, OT, school later on) and just let your child show you the way.
BTW the docs usually pick up all sorts of 'features' My DS has a high palate, droopy open mouth, vaguely dysmorphic features (allegedly..he looks fine to me)
We never did get a diagnosis for what has caused his difficulties, but we have received help and services etc fine nevertheless.
Hang in there.

Georgebooboo Sat 27-Jul-13 11:58:51

Thank you all for your replies.
Poltergoose, no he's not in pain he's a very happy little boy!

Starfish enterprise , thanks I will try and join that group. The wait is for a couple of things. An appointment for a rest that tests the muscles and a test for two conditions sma 2 and something I can't remember the name of? Was you little one tested for these?

Medusaishavingabadhairday thanks for your reply. Could I ask what symptoms your little one had and how they are getting on now?

DS2 was very floppy from birth. Couldn't latch on to feed either. Very very slow to get head control, sit (about 11 months) smile (also 11 months) . All milestones delayed. Saw a paed when he was 3 months who kindly informed me she thought he was brain damaged. Later saw the neuromuscular people at GOSH who did loads of tests for MD etc, and a muscle biopsy which was mildly abnormal but non specific. He was consequently labeled with Congenital Hypotonia, hypermobility and developmental delay.
Saw genetics who flagged up 'markers' (wide spaced eyes, high palate, open mouth etc) still no diagnosis.
Added in speech delays later....

Fast forward in time. he eventually walked (2.5 yrs) talked (4 + ) Wears splints (AFOs) , has had physio and speech therapy,Many years later he is a tall handsome and VERY talkative young man of 16. Yes he has special needs... he still wears splints on his legs because his muscle tone is poor, and he has some learning disabilities and autism. He has just left special school,where he has done amazingly well.. the only pupil to sit a proper GCSE. (in maths his one 'normal' ability)

He's never going to win the olympics, but he can walk, and swim. He has friends, and is a happy boy.

Hoping you will have a similar outcome... some of the muscle tests are not terribly nice (biopsy is fine, nerve conduction not so nice) but at least you are getting things ruled in/out quickly.x

Georgebooboo Sat 27-Jul-13 20:12:36

Thanks for the reply.. There is some hope then.. With regards to the nerve conduction can I ask would u put your son through it again? I don't want the full details as I've already scared myself half to death but don't want to put him through anything pointless or anything where there is a better alternative ? X

Firsttimer7259 Sun 28-Jul-13 22:06:46

Our DD is 3.5 now and we are just coming to the end of the really really hard first few years. The tests are a nightmare, its horrible to wait and not even be sure what youre hoping for - any answers at this age are generally not what you'd want to hear. But somehow you gte through it. Step away from Dr Google, he's not your friend. Your various therapists will start soon and give you more positive things to focus on.
Focus on your support networks and whatever helps you stay sane and stay together as a family.
Our DD has significant and complex needs, shes a little mystery as far as modern medicine is concerned, shes unlike any child our pead has seen, all her tests are clear. Shes still very significantly delayed but we are starting SN nursery in just over 2 weeks and she is an adorable little girl. Some of her frustration is easing, altho she still cant speak we are better at manageing her needs and shes usually happy and smiley. Weve had excellent experiences with nursery and other childcare, she has made more genuine loving bonds with people than I would have dreamed of. It will be ok, but this bit is just really hard.

zzzzz Sun 28-Jul-13 22:41:52

We were told our muscle biopsy would take a few months, it ended up being over a year and then came back normal. It was awful, but we nearly lost dd, so I was pretty numb anyway.

I google. For me knowledge is power, and I am stronger after shaking in the night.

In answer to how you "cope", I'm not sure we have any real choice. This is the hand we were dealt and so we endure the awful bits, crumble a bit sometimes and live the happy bits hard. Dd is a joy and I am often truly amazed that I am lucky enough to have her.

glimmer Mon 29-Jul-13 04:40:29

I have been where you are. And so I know that nothing we can say helps.
Except that we have been there. I love zzzz answer. We don't cope, but we don't have a choice. Unfortunately that's the naked truth. Be kind to yourself. Cry with and for your beloved child. Try to enjoy the present anyway. It does get better (because you get used to it), but it didn't help me when people pointed that out at all.

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