Is anyone else starting out on the road to a diagnosis? Fancy holding hands on the bumpy path?

[hazeyjane]

Ds (10 months) had 2 appointments in one today, a medical assessment and developmental assessment. He was referred at 7 months to the community paeds, due to developmental delays.

We are now booked in for some blood tests next week, and some physio, and have been referred to a SALT, for portage and to a special needs playgroup.

It is all so overwhelming, on the one hand I feel so much better, after months of waiting that I am able to do something. On the other hand I feel as though everyone is still scratching their heads over ds, and I just want someone to say, 'ah well Mrs Hazeyjane, your son has -- thats why he can't do these things, (well I don't, obviously I'd rather they said, 'ds will catch up and there is no issue, now be off with you'!)

I know that this is going to be a long process, is anyone else just starting out, or a little further down the road, for handholding, venting and advice?

Firstimer hope it hoes well tomorrow, I'll be thinking of you all. Regarding your family, mightily insensitive of them. I have had comments from family that were difficult to take but none that blamed me. It's sad that possibly they see that it's easier to blame your parenting than accept that your DD has problems, it may be that they're still trying to be in some sort of denial about it and feel that if they blame your parenting it means that eventually all will be well with your DD? I hope this is the case and that eventually accept reality and are able to offer you support.

Hazey, good luck with the EEG. Again will be thinking of you x. The inky thing I know about domperidone is that it is an antisickness drug that they used to give to Navy staff who suffered from really bad sea sickness that didn't improve on acclimatisation. They stopped giving it when they realised that a side effect was lactation! A friend of mine was given it when she had problems breast feeding her Tongue tied baby to increase her milk production. It doesn't have that side effect for everyone though!

Ooo I missed usedto's announcement too and now I can't find it either! Bums.

I just happened to notice it on another thread, hanbee, so don't think there has been an official announcement.

One of the reasons i asked about domperidone, was because I have been on it twice (I had chemotherapy for a year, pre children, and had to take it for sickness, and also took it when i had dd1 in order to increase my supply, because I was struggling to feed) but all i can remember is that it bought me out in a rash. This wasn't a huge deal for me, but i just wanted to make sure that I was on top of it, if it made ds extra sleepy or anything. Fingers crossed he doesn't suddenly start lactating - frankly that's all we need!

Good luck if you decide to call the geneticist, missmavis, ds's consultant said our results would probably be in by the end of July, and it is already starting to prey on my mind. It seems so ridiculous to be wanting them to find something, and if it comes back all clear, everyone will be saying to us....'well that's great isn't it, ds hasn't got a genetic condition, and he'll catch up in the end bla - di, bla -di, bla, bla'.... but of course we (and you lovely people on this thread, and one of my friends in rl) knows that it isn't as simple as that, and actually we are back in that horrible grey hinterland of not knowing.

Did I mention that it is preying on my mind!!!

Thinking of FirstTimer's dd today, keeping everything crossed it is a smooth test.

Thank you! Just came on to update the thread, she was born at midnight sunday after a long, awful labour which followed the pattern of dd's birth so had me terrified. All ok though and she'sfeeding well. A very different experience after the birth, home in two days rather than three weeks and baby able to just be a baby not the constant medical torture dd had to have.

DD has been so lovely with the baby really protective.

Oh firstimer the "old enough " comments drive me mad, I want to list the things she's old enough to do but still can't! Good idea tosay what various people are doing to help I find that works in that it shuts people up-the more detail the better and maybe next time it will have put them off asking!

hazey thanks! And with the eeg I don't understand that, it would be hard for them to get him to sleep without you there! maybe they will have you in till he sleeps? With DD I went in with her to keep her settled while they did the awake bit. When the melatonin kicked in she rreally was out of it though and slept much of that afternoon too.

Congratulations used2!!!! Lovely news, I am so glad it went well. You sound good. Lovely to hear your grl is being so welcoming too! I hope you gte to enjoy some family time together.

The MRI was fine again. D screamed the ward down strategically and got herself onto the first on the list [clever girl]. But I was just the one tantrum arund her lunch time. After that she did brilliantly. The scan is a follow up on last years which showed some variation in the white matter that may or may not be normal. We should gte a first talk through results in 2 weeks. Long exhausting day but nothing awful.

Thanks for the supportive comments re: my family. I find them incredibly upsetting. We dont speak much anymore but they always seem to be able to drop a real clanger and each time I am too gobsmacked to say anything about it.

Hvae you started the domperidone yet hazey?

Got fingers crossed for good news missmavis?

Thank you very much for all your responses regarding the meeting.
I wanted to write earlier but on Tuesday my DD decided not to go to sleep until 11pm(she goes to bed at 7.30). Just screamed and screamed. My DH was called out for work-he is much better at settling her than me, and we had guest over to watch the England match.It was just awful.Oh,and she woke up at 5.30.
I think the meeting was a positive experience. It made us feel that DD is in good hands. Everybody came exept our lovely portage worker (she sent her detailed report though).The peadiatric consultant said that 'his gut feeling is that DD's delay has genetics reasons'. It sounds a bit weird the way he put it.
They going to do more test on her, lots of blood tests, eeg and lumbar puncture. The last sounds so scary even just to think about it. And after reading about your eeg, hazeyjane, I'm not looking forward to that either. I wish you good luck with it. I hope it won't be as difficult as it sounds.
He said that we should maybe wait for the results with trying for a new baby. It made me a bit worried.
I'm quite happy with our physiotherapist,although we're going to conductive education too, our OT is great but unfortunately the S&L therapist is useless. Really young and inexperienced and not helpful at all. Thank you for recommending the Sensory integration, Firsttimer! I will definitely have a look into it.

Today my DD woke up at 4.21am-I mean she's never been a good sleeper but this is extreme. Especially that we were going to see the In the Night Garden show at 10. Fortunately she fell asleep on the way there and woke up in a really good mood. The show was lovely and we all enjoyed ourselves. We then spent the afternoon together with my DH while DD was at the childminder.(doesn't happen very often)

Hi Varga - glad it felt positive and productive. I hope genetics wont be the underlying cause - it must have felt crazy to have that said to you in that setting. Had anyone said anything like it before?
On the lumbar puncture - I know those sound scary but actually they are pretty much routine in the sense that the people who do them do them often and well.
Im going to google conductve education - do pm me about the Sensory Integration Therapy if you are interested.

I had a visit to the childrens centre with D yesterday. They have a great room and garden and the propsed key worker seems nice but it would be just 6 weeks and then they want us to decide on there or the nursery. I dont really understand what the issue is but they seem almost punitive in their desire to enforce this.

How bloody irritating, FirstTimer, what are there reasons for not agreeing to her going to 2 settings? I didn't realise it was even possible for them to dictate that sort of thing.

Glad your meeting was productive, Varga. If a little surprising. After ds's first TAC we were hurried off into a little room, where we were told that the consultant wanted to test for spinal muscular atrophy, we walked out unable to speak, it was awful.

Can I ask what the lumbar puncture is to test for?

Used2 hope you are enjoying cuddles with your los, and managing to get some rest for yourself in between.

Missmavis, any word from the geneticist yet?

Ds has a new sound!!!! Up until now the only sound he makes is 'uh', he sort of sounds like a little monkey, 'uh,uh,uh'. For the last couple of days he has been making a sort of high pitched singing, he looks so blissfully happy when he does it, it is a sort of, 'laaaaaa' sound, and when he does it his tongue does all these strange fluctuations, very bizarre!!

Oh hazey thats sounds so lovely!!!

I dont get it either with the childrens centre - as far as I understand its so she doesnt get confused. I dont think she will be confused altho I do think it would be something to monitor, but it seems cast in stone for them that she will. bizarre!

I am thinking I might keep her home with me instead for those 2 days. I could work in the late afternoon and evening - I have some part time work as an interviewer and its generally evening work. Long days but should give me some free time for my own work on her usual nursery days. I do miss her and I dislike the childrens centre manager more and more, Im getting uncomfortable about putting her somewhere where I dont like the people/set up. Especially whn it looks like they will do their best not to make it work. I fell a bit of a wuss about this but...

Just got the letter from the childrens centre. They are offering me a total of 7.5 hours a week. Of which 3 are currently on a nursery day. I dont understand how they expect me to drop nursery for this. Its ridiculous.

So behind with this thread I will come back. DD1 has been admitted to hospital today, she has a bug and because of her condition has to be there. Her dad has taken her in, I am a nervous wreck ofc ourse and feeling awful its her first hospital stay without me-can't leave the baby due to feeding and can't take her in as scared she'll pick something up. She's with her daddy and being looked after but still such bad timing. And we had to inject her as she was barely conscious this morning, too too stressful. Will be back when things settle am meant to be having a nap-DH has been force feeding me and checking I am drinking enough after the midwife came because I feel like I have less milk already, probably due to worry.

Oh used2 that sounds very tough. Am wishing you lots of good things - mainly that your girl comes home soon and is well again

Oh, Used2, I am so sorry to hear about your dd1. I hope she is ok. What an unbelievably tough time for all of you.

When I had ds, he was failing to thrive and my milk was all over the place, because of cs and being in scbu etc, my MW told me to eat tons of full on dairy products - I think this is pretty much pooh poohed by everyone as a cliche - but dh went out and bought tons of full fat custard, jersey milk, double cream. It sounds mad but ds put on weight for the first time after that week, and my supply improved!

Look after yourself.

FirstTimer, would you be able to manage without the children's centre? They really sound as though they are putting up so many barriers. How can they say you can't use another setting, and then only offer 7.5 hours?!

thanks firstimer and missmavis. Just had a call from XP to say DD1 had perked up and was up playing then they came to do blood tests and she had a funny turn, passing out and her eyes rolled up. Which was either a fit or the stress (which is due to the horrible condition, her body can go into shock. But he said she's on her drip now and her levels are a bit better so hopefully she will be ok again soon.

Missmavis funny you should say about tea, my work sent me a parcel of goodies today with something called love love tea in it which I am guessing is something like that-couldn't have it yet as need a strainer but it looks nice.

I have taken to my bed with baby and DH is bringing me stuff when I need it, just trying to stay calm till I hear more. Hope everyone else is ok, sounds like I have missed some stressful things.

Sorry xp with hazey, thank you. And I am liking the dairy thing-DH bought me a tub of custard the other day quite randomly. He has been reading baby books I wonder if one said about the dairy thing how funny I had thought it was an odd choice (when I had asked for chocolate!!) But I will eat it happily, worth a try and lovely too!

Used2 so sad to hear about your DD1 being in hospital. Hope things are now improving and you feel a little less stressed. Sounds like your doing all the right things with feeding your new little one, look at it as a good excuse to rest and have lots of skin to skin! Perhaps you could share a bath too? It was recommended to me when DS1 failed to thrive. I'm now waiting to train as a breastfeeding peer supporter ( although I've been volunteer "unofficially") and so with that hat on I say: don't put too much pressure on yourself about it, it won't help. Your girls need a happy, relaxed Mummy more than anything and if this means a bit of formula either temporarily or permanently it won't be the end if the world (however much some people make it out to be).

Firstimer, I can't believe how pathetic the children's centre are being, would they even know if you kept her at nursery?

Mavis, how's the house move stuff going? Some old feller pulled out of the house's drive this morning and nearly crashed straight into me driving up the hill!

We took our boys to an open day at Duchy College today, it's a local college that do a lot agricultural, equine and outdoor courses. It was fantastic, DS1 walked all day and was so interested and engaged by everything. He fell asleep on the tractor and trailer ride at about 3.30! DS2 just fell asleep in bed this evening telling DH about "an-mulls". They loved it and it was all free!

Thanks hanbee, feeding is going much better again I think because I feel so much better now DD is home.

Today was awful though, fed every hour through the night then DD1 very anxious. Then a two hour wait on the ward to get her canula out and then she had a fit on my lap after it came out. It was scary it was the first proper jerking about one. She's ok and back home now but god what a few days!

Thanks hanbee, feeding is going much better again I think because I feel so much better now DD is home.

Today was awful though, fed every hour through the night then DD1 very anxious. Then a two hour wait on the ward to get her canula out and then she had a fit on my lap after it came out. It was scary it was the first proper jerking about one. She's ok and back home now but god what a few days!

Hope things are settling down a bit, now dd1 is home, Used2. Those newborn days are exhausting enough, without the added worry.

Ds has his eeg tomorrow, I had a plan for keeping awake - involving a music class, playing at friends and lunch out, then realised that he also has a home physio session at home in the morning....plan out of the window. These sessions always knacker/stress him out as well so don't know how that will impact on the afternoon. Ah well, we shall see what happens I guess. I am pretty sure it will come back clear, I think the choking thing is more likely his reflux/swallowing problems and his blankness is more that he gets tired so easily

Missmavis - I want to comment more on your latest blog post, but am on mission 'keep ds awake', so I am just having a quick mumsnet whilst he watches 'something special' and eats a biscuit. I just wanted to link to this bath support, it was the one that our OT recommended for ds, when he was at that, just sitting but still needing support stage (which i think your ds is at?) I didn't actually get one, otherwise i would pass it on. I ended up making do with a cheapy fabric sling support, which i would lie him back on for washing hair, and just make baths quick and very little water - it is back breaking trying to stop them slipping over in the bath (even with a mat), but I think the Ot thought that the aquapod support might just provide enough support that he could sit and play.