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?

I'm also behind with the thread. You lot lead busy lives!

Sorry to hear about all the injuries Hazey, hope the little hazey's gums are recovering. Bruised gums sound very painful, poor little guy. My DS1 always used to collapse too, it took a long time before he learnt to start putting his hands out and so I was always hovering behind him to catch! The paed has just referred him to a neuro muscular specialist to a test for various myotonic dystrophies for this reason. I'm not convinced they'll find anything to be honest and i have mostly resisted googling.

I also just celebrate the achievements of DS1 and now pay no attention to what he "should" be doing. I have a notebook of the new things he does each month. I'm always surprised about how many new things there actually are and when I look back to last year I'm amazed at the changes that have happened. I find doing this makes me focus on the good things.

Mavis, hoping the weather holds for your trip to Cornwall. It's been gloriously sunny today. St Germans primary were on the front of the local paper recently with the chicks that had hatched in their classroom, very cute and made me realise how lucky the children are to be growing up down here. I think there was about 12 pupils in the class! Crossing my fingers the house purchase goes through.

DLA renewal pack arrived yesterday. Must ring carers centre tomorrow and get helo with it before this baby arrives, yuck.

Missm my DD has possible/probable benign rolandic epilepsy. I must say, it has been worrying at time sbut really not as dramatic as you'd think. She had some funny turns shortly after waking up or when ill from around two, possibly before but I always put it down to her genetic condition. Then when she was three and a hlaf she dropped to the floor suddenly then seemd tired after-she had high blood pressure at the time and so that was checked out but it was a year before she had another funny turn and again it was put down as probably due to her condition and the fact she came down with chicken pox shortly after bbut they did a scan and found indication of epilepsy-the form she has (if she has it-its a very inexact process!)is relatively harmless and is generally outgrown by puberty. She had two further odd epsisodes but none of them have been what I had imagined a seizure to look like iyswim. We've been seen by a neurologist now who did her MRI and offered medication but so far I haven't started her on it as its so minor when anything does happen.

Hope that is reassuring, the neurologist said that children with delays etc are more prone to seizures but its not all of them at all and in my experience it hasn't been what I would have feared if that makes sense, though it has been a worry.

Hello all.

MissMavis, ds hasn't had seizures, but he has blank moments, which we have mentioned to the consultant, he suggested an eeg, but it seems to have been forgotten about. At first the paeds thought that his choking episodes were seizures, but after the more he has the more it would appear to be his inability to deal with swallowing pooled saliva.

He had an awful one on Saturday night, when we were staying at fil's. It went on for ages, with ds holding him upside down at one point to see if that would stop it. I have just seen our physio, and she said that we need to do a first aid course, and when we see the consultant tomorrow, we must not leave until we have a plan of action wrt to these episodes.

The physio was great, it is so much better when she does a home visit, as ds is more relaxed, so she is able to see him cruising and crawling and playing. She is a little concerned about the way he sits, which is very hunched over, with his neck scrunched up, and about the collapsing leg (the cause of all the falls!), but she needs to get him relaxed enough to examine him for areas of stiffness, so I suggested a series of fortnightly home visits, at a regular time, so he can get used to her ...... and she said yes!! Finally I feel as though we might get somewhere.

She also bought his walker, which is very dinky one of these. Ds, so far, is distinctly unimpressed!

Right dd2's teacher is coming in 15 minutes, just enough time to leave some intellectual books lying around....

Hazey at DS4's SpS they decorate them with colourful aprons which double up as a bag.
Have you thought about a course of regular massage for DS just to get him used to being handled and then relaxed about being manoeuvred. Chiropractoring might be worth a shot to just check that everything skeletally is where it should be.
I do remember my DS with his brick trolley and DH's adaptions to it. The longer handle and the very heavy next directories in it. Worked a treat in a straight line!!

A 'manbag' is a very good idea - ds has inherited his mother's love of a good accessory!

I hadn't thought about massage, but that is a great idea too, although letting someone else touch him, might be a bit too much - will definitely investigate the chiropractor thing though.

Physio showed me percussive tapping, and talked about lung physio.

I was a bit knocked back by what she said about ds's low tone, that basically although his muscles have strengthened, it was so significant that he will always suffer low tone, particularly when tired or ill.

The massage might be a good thing to incorporate into his bathtime routine (if you have the time with two other kids!!). A friend of mine uses massage when hers are under the weather, especially for ears etc.
The chiropractor to look for is a McTimoney one. They're very gentle and not crunchy and clicky. Look at this list, you have several to choose from. www.mctimoneychiropractic.org/index.php?option=com_comprofiler&task=usersList&Itemid=58&limitstart=0&search=&name=&city=&cb_address4=Swindon&cb_county=&zipcode=&cb_country2=&cb_type%5B%5D=here

www.mctimoneychiropractic.org/index.php?option=com_comprofiler&task=usersList&Itemid=58&limitstart=0&search=&name=&city=&cb_address4=Swindon&cb_county=&zipcode=&cb_country2=&cb_type%5B%5D=

Hi everyone,

Mavis, DS1 has never had any seizures, he's 3.7 now so I'm guessing they would have started by now if they were going to? (turns round three times and crosses her fingers).

Hazey, we've had something from portage called a Tac Pack. It includes lots of different items such as furry fabrics, chop sticks, rough items and you use different items to touch the child whilst playing a CD. Different music and tracks correspond to different textures. Might be worth seeing you can get one as it helps get sensory sensitive children get used to lots of different types of touch and sensation. There's several different packs. DS1 really enjoyed the ones we had.

Here we've had a fantastic day. Found out that DS1 has got a place at the CDC from September (YAY!). Portage have referred us for free initial sessions with bibic (www.bibic.org.uk/) who now have an outreach sessions in the south west. And if that wasn't enough had a visit from the specialist health visitor and have been given free nappies from now on! Apparently Cornwall now give them on the basis of need rather than a minimum age so I could have got them sooner but never mind.

How strange, just back from seeing ds's consultant and he wants to do an eeg, to see whether ds is having seizures (the choking episodes). I am utterly confused about the whole appointment, which we have been waiting for for bloody ages. I'm in such a state of about it that I don't even think I can write about it!

oh hazey poor you. When you are ready if you want to know about eegs let me know as DD had a sleep deprived one last year. xx

Whats going on hazey? We had an eeg over a year ago - D has blank episodes. They did it with stobe lights etc didnt find anything but I guess they arent entirely conclusive. Cool looking walker btw!
We had stressful OT appt today - D had one of her tantrum type crying episodes for a full 25mins. The LA VTSS was sitting in so in a way it might be good to ensure D gets additional support when moving to thw tweenies room.
But it is just very very tiring.

Ok, have had sandwich, chocolate and a cup of coffee (think i had a bit of a sugar low after seeing consultant!) and feel a bit better.

Basically, the consultant said that in his opinion ds wasn't aspirating, so he saw no need for a gastrostomy tube (this is great, and we are relieved), so i asked why he might be having so many chest infections and whether that should be investigated,and he said that it is just because he finds it hard to shift the crap off his lungs when he has a cold. I asked then if it would be possible to see the feeding salt who did the videofluoroscopy just to go through her report (which said he was aspirating and recommended a tube, plus help to improve oro motor skills), but he said that ds is 'coping' with food and he didn't see any need for us to see her.

So we asked about an action plan about the choking episodes, and he didn't seem to have a clue what we were talking about, despite it being him who thought originally that he may be choking. So we described an episode, and how they are getting worse, and I showed him a copy of his letter regarding the episodes. He is concerned about the fact that we said that one side of ds's mouth turns down when he is screaming during an episode, and despite him dismissing the idea of it being a fit/seizure previously, he is now leaning towards that idea, hence the eeg.

He has suggested we stop all reflux medicine, as it doesn't seem to have improved his reflux, but didn't suggest any alternative, he also said there was no point in doing a ph probe, as the medication would be the same whatever the result.

He dictated a letter which said that ds had significant speech delay, mentioned something about his tongue, his understanding was inconsistent and that in all likelihood ds is suffering from a genetic condition, and then said ok, see you in 3 months when hopefully I'll have the results of the genetics tests.....bye.

Dh was on a high about the fact that ds doesn't need a gastrostomy tube, but I felt completely dissatisfied about the whole thing. He just kept evading questions and didn't seem to have even looked at ds's notes, he was desperate to get us out of the door (they always run late). I just feel frustrated that we have been waiting to see him since before Christmas, and he was just a bit useless.

Anyway, that big old splurge got that off my chest! I have decided I am going to ask to change consultants and call the feeding salt myself.

Sorry to hear about your dds screaming - it is exhausting isn't it. Do you have an idea of what causes her to lose it?

thankyou, btw, used2, I will be back to ask about eegs!

Ugh - I hate mixed messages like that - leaves you with no idea what to do. Altho would be great if you had a clear no on the feeding tube...sounds terribly disappointing.
We have no idea about the crying episodes. they just come and go - maybe she gets annoyed/frustrated because we dont know what she wants.
We have just been offered a place at the childrens centre. Should be happy as we are beyond broke but I dont have a good impression of them and we would lose our current OT and physio - both of whom I like and think are really good. Will go by next week and see if I like ti better. I feel like we might just end up doing this because we need to save money rather than because it is a good solution. Hows that for making you feel like a crappy parent? Its so shit I saved up so much before having her. Years and years of saving and its all not enough because I need so much more help looking after her than I budgeted for and Im out of work and we are going through our savings like theres no tomorrow. I am looking into all kinds of evening and weekend work to try to make ends meet but I just dont know how we will make it.

oh how annoying hazey! I hate when its all blase like that too when its major life changing stuff for us parents. I would do exactly the same re contacting the SALT.

FirstTimer, does your dd get any sort of funding? Ds gets funding towards a nursery setting, as it has been deemed important for him developmentally. I think it is to do with his CAF form (I am completely confused by the funding thing - it was sorted by his early years keyworker).

I have just had a morning of trying to sort this out, I know it is important for him to go, but part of me just doesn't want him to go to nursery. I enjoyed having the girls at home until they started preschool, and I guess I would love that for ds too. I thought I had made my decision wrt changing settings, but have completely back pedaled after spending the morning there. There is no way ds is ready, and they seemed unprepared for how delayed he is. They were a bit iffy about him having his walker there, and had changed their minds about me being able to stay. It is all so bloody confusing!

hazey - nursery is going to apply for an additional support worker but I guess I dont want to get my hopes up - even tho she really needs this.
I know what you mean about childcare - we use loads of childcare basically to stay sane and patient with D. I am just better when I dont look after her all day. But its a lot more childcare than I would ahve wanted to use. I do enjoy being with her but she also needs so much input that its so tiring.
Can you take your funding to a nursery you like better? Or maybe go a second time when they know you and what to expect and see what you think after that? Being iffy about the walker is a red flag tho I guess. However, I find the first meeting with any mainstream organisation is always just awkward. Trying to explain everything and seeing peoples eyes go wide is horrible. Maybe it just needs a second look before you rule it out. I was amazed at how well D copes with nursery in spite of having almost zero communication. I was very concerned when she started but it has been good. She doesnt have the same clinginess as your boy but maybe trying him at it for a while (somewhere you feel good about) and see what happens to his clinginess, you can always stop after a few weeks if its no good.
Any luck on getting a second opinion about the choking/feeding issues? Or at least an opinion thats more 'in the round' and you believe the consultant has read and actually considered everything. I really find it not good enough when different health profs tell you opposing things but then just leave it there...How on earth are you supposed to evaluate their different opinions without professional guidance. I wonder if there is some procedure or something you coukld activate to make someone get back to you and talk through the different opinions in more depth.
I am still at the DLA form whcih for me is a big WIN. Slowly slowly inching my way through it.
Have a read of why not to mess with an Autism mum thread - made me laugh - cant believe I am actually at this point: out of the grieving and into the fighting more and more.

Spent this morning prepping H for our 'meeting around D' explaining why he mustn't talk up her achievements and progress - I hope its sunk in. I think he partly thinks I am an old misery guts and 'criticizing' her (still!)

On the second opinion I have found that while appts take ages to come through I can get a consultant on the phone fairly quickly (usually within a week). They will call - sadly at the end of the working day which is often mayhem here - and talk through concerns quite carefully on the phone.

firstimer I am glad I am not the only one who has to prep (both XP and DH)on what is and is not appropriate to say at these things!

I f anyone finds somewhere you can get professionals to come together and say what they mean with the differing opinions thing let me know!

Just had really nice letter from the neurologist to me an ddoctor about how he feels we made the right decision not to medicate dd for epilepsy yet. he says also that he thinks I am right in thinking DD is operating at around a three year old's level. I would like a more formal break down of where she is with what and will hopefully get that at the neuro paed appointment but it is good that he says that in writing and that he said this is what we felt her to be too. Also just had long chat with her dad about special schools and am about to ring one to see if I can look around even though we are not in catchment (and the LEA would prob argue against it anyway).

Well done with DLA form-I booked for a lady from cerebra to come and help with mine in two weeks so got to try and not go into labour before its done!

Feeling crap today. Keep eating which isn't helping. Trying to make myself go to an excercise class but not in the mood at all.

Long chat with her dad yesterday was helpful in that he is on the same wavelength re schools but also upsetting as made it all more real. I feel like it has hit me that she is going to need support for the rest of her life-he was saying don't jump too far ahead but I have a horrible feeling he meant in terms of life expectancy rather than because she may "catch up" because he also said he thinks if we are honest with ourselves she is not going to be ok in mainstream ever. He said she needs to be with people she can relate to in the future.

Sorry to be on a downer today I am not sure why I feel it has just hit me, it "just hit"s me regularly rather than it being a new thing, same with her genetic condition before we knew about the developmental stuff, every now and then it would just get to me whereas the rest of the time I just got on with it.

Hi usedto, sending you a hug as I know exactly what you mean. I hate that sinking feeling when it hits you. I think that day to day you get so good at getting on with it and so immersed in your reality that every now and again it hits you that this isn't how it is for most people, that your lives will never be "normal", and the future seems very unknown and scary.

Thanks hanbee, its good to be able to talk with people who know what it is like.

I rang a special school today and am going to look around it next week. the head talked on the phone to me for around twenty mins she was really helpful. She asked some interesting questions about how dd was doing that I didnt know the answer to and its certainly given me stuff to think about. I think I need to know exactly where dd is developmentally to know hat to do next but far from being shocked, every family member I have mentioned ss to has seemed to think it a good idea.

Sorry to hear you were feeling so rotten yesterday, used2. I also had a day where it all hit me in the face, spent the morning trying to sort out the mess of which nursery ds is going to go to in September, then remembered that ds had a SOGS and couldn't face it, so called the HV to cancel, only to have her tell me that she was going to call anyway to check up on the reason why ds was in A+E. Saw the gp in the afternoon about my nonstop headaches, and ended up sobbing for the whole appointment. It just feels a huge pressure sometimes to 'get it right'.

Today I am purposefully sticking my head in the sand about appointments and tests and bloody nurseries, I just can't think about it any more. So far ds and I have had coffee with a friend, and he is now zonked out on the sofa next to me after our first hydrotherapy session - which was lovely.

Hope you are having a better day today.

Those moments when it just sinks in are awful. Big hug to you used2. I hope you feel a bit better today - or that if you dont you ahve something/someone nice with you for some support.
Sorry you had a tough day too hazey. You have been phenomenally busy and had all kinds thrown at you over the past month or so. Try somehow to find something for you. (Dont ask me how) I feel this almost relentless urge to constantly think through, look up, find out etc stuff for D. I know it would actually be better to try to relax more but I dont know how to let it go. But I wish you a few days off.