how do i stop second-guessing what's wrong whilst waiting for a diagnosis?

[Jenkeywoo]

dd is 13 months old - she was born at 35 weeks by emergency section and almost didn't make it - she had stopped moving and I took myself to my local hopsital - was blue-lighted to another hospital with instructions to deliver her but they monitored me for another 8 hours before doing the section and I've since been told we are lucky that she didn't die. Anyway, at 13 months she is sitting up but not always well but that's it - she also shows weakness in one arm - keeps her thumb tucked in and can't reach well. She also keeps toes curled up a lot - like a foot in a fist. We saw a community paed who said it could be nerve damage in her arm from the delivery or could be cerebral palsy or both. We are now waiting for our hospital assessment to find out more. I just can't bear not knowing - I keep finding myself looking for info on the net and trying to 'diagnose' myself. I also think about whenever i'm with dd too, can't just play on the floor am thinking 'what arm is she using? are her legs stiff? why isn't she sitting well today?' - I've also heard that CP is difficult to diagnose so if she does have it we may not get a diagnosis at this stage anyway. I just wish I knew what to expect - at the moment walking, even crawling seems a world away but I'm finding it hard to look after her as she gets so upset and frustrated that she can't do things. sorry this is whingey - i just feel a bit overwhelmed by everything at the moment.

[Yummymum1]

Have no advice jenkywoo but am sending my sympathies as it is so hard when you know somethimg is wrong but dont know what.
Poor you as well with very traumatic birth,hard to come to terms with.Be thankful you have your beautiful dd whatever difficulties she may have.Her getting frustrated by not being able to do things is also normal in a lot of children but i agree it does make things hard to bear.Chin up and keep plugging away for a diagnosis.

[bigcar]

Its horrible, isnt it. We always seem to be waiting for various appointments and test results with dd3. She was quite ill when she was tiny, probably with whooping cough, but nobody took us seriously until she started losing weight. Anyway shes has had what feels like loads of tests and its always the wait that is the worst thing. Wait for a referral letter, wait for the appointment, wait for the tests, and then wait for the results. Like you said, all you do is try to work it out yourself. Beware of what you read on the net, the number of times I have scared myself stupid, you would think I would learn!

The only thing I would say though is that the doctors will ask you just about everything your dd does so its always good to know exactly what she is capable of doing and not doing. The problem is trying not to read too much into something which good just mean shes having a bad day or feeling under the weather.

We are waiting for an electrical nerve hearing test at the moment which has to be done under sedation. Shes definately not completely deaf but it looks like she may have a slight hearing loss. At the moment we think she does, one of the doctors told us its not uncommon with children that have eye problems.

So lets all wait together!

[mymatemax]

HI Jenkywoo
My ds2 was born at 28 wks, by emergency C section after he had stopped moving, he was in severe distress. We have had all sorts of suggested dx along the way & has done so much better than his original prognosis.
I think it is natural for you to try & guess & search for a diagnosis, dx or not the doctors & therapists should offer support according to your dd's needs. Push for everything, even if its not needed it is better to cancel unwanted appointments than not be on a waiting list.
Good luck & take care.

[hk78]

hi there jenkeywoo



of course i am not offering a dx or anything but your description of dd sound just exactly like my dd1, she has hemiplegia which is a form of cerebral palsy.

and you are not whingey, you are a worried parent. i remember being where you are now, and the way you describe yourself feeling and thinking is identical to how i was.

but sweetheart, you are in very early days, and the dx will eventually come and you will eventually get your head round it. there is not a 'get back to normal' time, what actually happens is that you develop what i call 'the new normal' the waiting to know was the worst bit for me, then when you get dx you can move forward.

as for looking for info online, trying to dx her yourself etc, yes i did all that too: well, so what, it doesn't matter, if that's what you want to do at the moment, just let yourself. i still scour the internet looking for new info etc. and my dd1 is 8 now. it makes me feel productive, that i'm doing something, that i won't miss out on any new info.

practical things: if someone says you are on a waiting list, don't assume that you are:contact them every few weeks to make sure you are still visible on the list. i found that phone calls were largely ignored but written contact/letters were always taken more seriously.

when you go for your appointment, if you have any doubts about the dx, push for an mri scan or similar, this will give you a definite answer, which is what you need.as you say, cp is difficult to dx, so you are entitled to the proper tests. you are entitled to this, you must be quite pushy:keep asking and writing letters until you get it.we were 'discouraged' and 'put off' from having the mri, but i kept on about it and eventually it was done: it gave us a real answer.

i found these very helpful:

this


this

[jenk1]

i can only echo what hk78 has said in that we were in exactly the same place as you are now 2 years ago with our dd.
originally she was given a dx of hemiplegia in her left side, but a year on and you wouldnt know, its now her legs that cause her the most difficulty.
i looked up every site going, i even suggested to the Paed hemiplegia, big mistake he didnt like that he said who,s the doctor here, but a couple of months later he said she had hemiplegia, of course that was nothing to do with what i,d said

nothing can stop you from worrying about your child and like others have said on here, you have to push for everything, dont worry about being a complaining mum and you are NOT a winger, you are just a concerned mum who loves her dd and wants the best for her.

[Jenkeywoo]

Thank you for all your advice and support - it's nice to be amongst people who know how all this feels. We have received our appointment at the Child Development Centre next week so hopefully things will be a bit clearer then.

[mulsey]

My wee girl is 6 and we are still without a diagnosis! You do learn to live without it though honestly.
When my daughter was your daughters age our ped doctor called us in for a big meeting, he was going to diagnos her with CP. However after talking with the physiotherapist he changed his mind, deciding it wasnt cp afterall. They are not gods and can sometimes get it wrong, second opinions are good.
Lastly my wee girl keeps her toes curled on her left foot, always has. When she was little her feet were quite puffy, this was because she was not using the muscles on the top of her foot. She was fitted for splints when she was 3, at which point the doc tickled her foot - top and bottom. She raised her toes, which ment that for her the problem was not a mechanical problem, but indicated more of a neurological problem, which was believe it or not good. Because now that she wears the splints, which keeps her feet flat, all the muscles have developed correctly, and the puffiness is gone. Get some cream and massage the soles of her wee feet, up towards the toes, as you will be helping prevent any stiffness and generally stimulating them too. Youve probably heard us all talk about Piedro boots, these are a great help too.
Good luck...

[hk78]

keep posting on here jenkeywoo


if hemiplegia is mentioned please look at 'hemihelp' website, they have a whole section of information leaflets which you can either send off for, or download yourself. they also have a messageboard.

they have been a godsend to me & i wish i'd known about it sooner when dd1 was little.

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jenk1, agree with what you said about doctors don't like you having any ideas of your own! (you wouldn't have to if docs weren't so lacking...........)

in fact, no-one ever wanted to tell us anything about dd1 - vague terms like 'neurological' were muttered under doctors breath etc., but it was me who went back to the hospital after i had learned the word "hemiplegia" on t'internet! and said 'is it this?' and they said 'er, yes'. ffs! i always had to ask them, never the other way around. pathetic.

so i soon learned to be a real bolshy cow and prise information out of them.

i used to be nervous with doctors, but that soon evaporated.(along with the respect)

you learn to enjoy it and think of it as your role in life.

mulsey, agree about the massage, it does help (and you feel that you are doing something useful for them)
dd1 used to have piedro boots, she also has a splint.

[Jenkeywoo]

Mulsey - bizarre that you mentioned puffy feet - Heather's are like little puffy marshmallow feet, thank you for the information on massaging feet.

HK78 I have looked at the Hemihelp page and it is really a good site, it does also same very like Heather so if I'm feeling brave I'll mention it but TBH I'm feeling a bit freaked by the amount of people who will be at this assessment next week - there will be a PT, OT, SALT and paediatrician all at the same time, and I bumped into my HV this morning and she told me she has been invited so will be there too! Add in me, DH and my other little girl who is 2 and we have 7 adults, a toddler and a one year old! sounds like the title of a dodgy 80's movie.