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?

As a newbie here, and having traveled the "not sure what is going on" road for years now, I have read much of this thread and can relate. DD has developmental delays, as did DS, and they both remain undiagnosed (but the assumption is that they have the same condition).

At their ages now (DD 6 & DS 14) I can tell you that all the prognostication of what kids will and will not do or what their delays now mean for the future, I can only share one thing... the only one who knows what the future holds is the one who is making you scratch your head in the first place (and they are not telling). For as much as we want to see the crystal ball, and know all the answers, perhaps not knowing helps us to strive for the best, to

DS, who didn't speak a word until he was 4 1/2, is now one of the most eloquent young men I have ever met. He scored off the charts on the assessments he has had since he was 9, and is on his way to secondary in a fully enriched program starting in Sept. He still has motor challenges and is quite clumsy - he can barely write his name, but types 120 words a minute. He is still socially awkward, but so often, that goes hand in hand with being a bright kid who has a tough time relating to his peers... he is not, however, anything like we feared from the non-communicative boy starting kindergarten after 2 years of minimal gains in a special needs preschool.

His little sister had a stroke before she was a month old... we were told she probably not be able to use her right hand as more than a helper at best, there was a very good chance she would not walk, and because the language centre of her brain had bee totally wiped out, she would never speak. Of course, she wrote her own timeline and is clearly following her own agenda, but she walks, uses both hands in such a way that you would be hard pressed to tell which one is her affected side, and talks in a constant monologue from morning until night (and frequently in her sleep). She is not "healthy" in the traditional sense of the word, since she has a frightening number of diagnosed ailments, but she is "well" and takes the world by the horns.

Please don't think I am minimizing the magnitude of the effect that developmental delays have on a child and their family. Precisely the opposite - the uncertainty we face has the ability to reduce the strongest person to a quivering mess and have the most level-headed parent doubting their sanity (not to mention the effect this all has on a relationship ).

I know the terrain well, and while I can't say a single word about the "ins and outs" of the support systems there, I can speak to the emotional side... and most days, I feel like a cross between a reluctant superhero and a raving lunatic.

Sorry for the long silence we've been having a bit of a week as Wednesday night DS1 suddenly went down with a virus and couldn't breathe properly, I tried managing it with inhalers but eventually he had to have an ambulance come with a nebuliser. His oxygen levels had dropped to 82%. He recovered well with the nebuliser and we managed to keep on top of it with his inhaler after that. I really thought he'd outgrown having virus induced wheeze, he had episodes between 11months and 2 but nothing since then. He's on the mend now but still very tired as am I because of sleepless nights and worry! Missed his first ever end of term party and the leaving party of his lovely SENCO too.

We...wait for it... had a BBQ today!!! I know, in July, who'd have thought it! It was so sunny and we sat and watched the house martins wheeling in the sky and the tractors bringing in the hay and thought "yep, summer's here". You picked a great weekend to come to Cornwall, Mavis! Wish we'd all had good enough health to meet up.

Glad you had a good weekend Mavis. Just think hopefully soon there'll be no more dreaming about it! It's still be gorgeous today so the village toddler group are off to the beach for a picnic tomorrow. If you don't hear from me I may well have thrown myself into the sea in despair after pulling all my hair out!

In other news, DS1 said a very clear "Yes" this morning when his seal puppet (me) asked him if he (the seal) was funny. Bless.

Wooooo - tumble weed!

I'm off to visit my in laws for a week tomorrow so probably won't be around for a bit.

Hope you're all having a good summer, judging by the silence on here you're all out doing fun things.

Hello, I'm here but ds is really poorly so I have been lurking in threads but have no energy to post. I am just waiting for the out of hours dr to call, after a night of holding ds up because he is coughing so badly. He has barely woken up this morning, he is just so hot (39) and floppy - horrible.

Sorry to hear your ds has been so poorly with the pox, MissMavis - I think it is a good idea to err on the side of caution with the pox, and get him to the dr if you are worried.

I felt exactly the same wrt dla, relieved but it felt odd to have it written down like that. Don't forget about carers.

I am loving the olympics, am so excited about going to the paralympics. I emailed them about ds and his buggy and they said that they have wheelchairs on loan - may be worth investigating?

Hazey sorry to hear that, hope things improve soon. So scary when they are ill like that and lonely when it is night time.

DD1 is away for the week-first time. We really needed a break though she has been very aggressive to DD1 and a recent hospital appointment explained a lot of it-her levels (for her genetic condition) are still out and she is having some nasty symptoms which I won't go into on here but they need investigating and are looking likely to be what they are worried about. Poor DD1, she just has no luck at all. And the tests are very unpleasant and she has really overused hopeless veins. I have asked for the registrar to come to the ward while she is having it done and she said she would hang around also in case of seizures, which given last time she had a canula are quite likely.

hazey Hope DS gets better soon. What did the our of hours say.
My DD gets floppy when she is unwell. I have never heard anyone else use the term floppy but i know what you mean.
Have u any ideas why he goes floppy??

Well ds ended up in an ambulance being taken to hospital, his o2 levels were really low. He had a chest xray which showed that he had pneumonia. They gave us a load of drugs and gave us the choice of whether to stay in or go home with the proviso to come back to the ward if he deteriorated. We went home, and he has been improving today, which is great.

The dr said that his low tone (lac, he has gross hypotonia - ie low tone in his whole body, this is what makes him go very floppy when he is tired or ill. He was so floppy yesterday that he was like a ragdoll, he couldn't stand or sit, it was awful) was masking the recessive breathing which is normally a sign of low oxygen.

It was odd because I felt so calm throughout the whole thing, and the hospital were brilliant at listening to me and asked me to look at the xray with them and were just so good at treating ds, and realising there were different issues to the 'norm'.

When we were looking at the xray a couple came to the desk to complain about the fact that their ds didn't have an xray (he was also suffering from chest problems) - it was so odd, because the drs couldn't say specifically why, they just said it ds was a different set of circumstances. It was really awkward because I was stood right there and they were pointing at ds and asking why, 'this boy' had an xray and theirs didn't -Bizarre!!!

Hazey, I have the calm feeling now when dd1 is very ill-its like my brain allows the calm so that I can do what needs doing (inject her, get her to hospital and explain what needs explaining.)I do often feel a bit shakey afterwards so will have can of coke or sugary treat!Glad he is ok it can be so scary. Have also been in same situation with hospital though never openly. It is scary knowing how serious your childs illness is taken but good of course, other parents need to understand that. My dd always looks healthy after the injection but will deteriorate again if she doesnt get her iv steroids fairly soon after so parents must think it doubly unfair when she is rushed through when she seems ok. Generally though we go straight to the ward as we have open access to it, whichhas been so much easier than waiting in a and e and it also means the staff knoww dd and her condition.

MissMavis, so sorry to hear that ds has been ill, it is so tricky with the pox, because everyone expects it to be fairly run of the mill, but it can take a nasty turn, especially if there is other stuff going on.

All I can say is I am very much comfort eating today, (trying to ignore the fact that my arse is the size of a small country).

Poor you too missmavis, we also had a horrible time of it with chicken pox, involving a hospital admission and later, ambulance ride! It is not always the straight forward thing it is seen as, horrible illness.

Also comfort eating massively, partly in preparation for joining slimming world this week

Hi. I am a mum to a lovely little boy 20 months. He was born 2 months early and scans in scbu showed a brain bleed. We were told this could cause problems. He is showing spasticity in his lower limbs. We are waiting for an mri to confirm white matter damage a diagnosis of cerebral palsy spastic diplegia? Well i say that as that is all that has been mentioned not really sure what i will do if bleed has reslolved leaving no damage.. Guess then we start a new journey.

He started physio 2 months ago and has gone from camando crawling to properly crawling. Sitting still very difficult for him due to tight hamstrings,getting better though and he is starting to pull to stand well he drags his upper body not really putting any weight through legs.

I am thinking of private physio for him as nhs only once a month. Any thoughts? He has just had grommets placed due to re-accurant glue ear so now we can go swimming. He hates his stretches but i guess thats a toddler thing? He is also under opthamology and metabolic bone team as plain x rays are showing low bone density.

Sorry for epic reply but thats our life sometimes lol

Hi all and welcome Charliegirl.

Lordy, I come back from my break and all kinds of drama have occurred! Hope little Hazey and Orange are on the mend now and you're recovering from all the stress. My DS1 also does the floppy thing and I also get the "calm". It's an odd feeling and sometimes I've wondered if I seem odd to paramedics and a&e doctors because I'm so calm.

Anyway knackered after 4 hours of Chuggington, whingey children and the M4, so I'm off to bed!

I'm sorry but why do people have to be so damn rude these days.
It's none of anybody business what treatment other children are recieving. If i saw a child being rushed around on a trolley i would NEVER even think sbout tutting or demanding to know why my child isn't recieving what "they are getting" (sorry rant over)

And it's also funny how im not the only person in the whole of the universe to have a floppy child when unwell. Yet not one doctor i have seen has been able to give me any sort of explanation as to why it happens. (and i have asked alot of them)

Took DD for her first Swimability swimming lesson today. Wasn't really sure what to expect but it went really well, (even if i did have to dig out my bikini and get in the water)

Had a letter off Genetics today for my first appointment, just want to talk to me not see DD. Anyone had one of these yet? what sort of things do they ask?

Also has anyone gotten a diagnosis from genetics?

Hi everyone, sorry Ive not been around much. Really sorry to all of you having a worrying time in and out of hospital. I am shocked that people are so ridiculous about comparing treatment. Its just basic triage - plus phenomenally rude to complain like that. FWIW I bet staff see those other patients as incredibly ignorant. My family are drs and would be v if a patient complained like that. Flowers for you all
We've been doing well. Walking keeps going from strength to strength and I am amazed at how much difference it makes to our lives. We can go out and let her have a walk in the park and playground even if its wet. Ive been letting her walk around malls and tescos too and shes so excited by iot all. Cheap entertainment!

Welcome to charliegirl. Im not sure paying for more physio will add all that much as progress takes time and if you are already being given tips on what to do to assist progress on gross motor skills I am not sure what more you would get from another physio in addition. Now that you can go swimming how about doing more of that or hydro-therapy if you can find somewhere that offers it. That would help building strength and confidence. Or maybe some other intervention that you arent getting yet - SaLT or OT? (this is just my tuppence worth and not from any specialist knowledge, obviously you are in a better position to determine what your son could benefit from)

Nice to see you here again lac On my expereince with the geneticist the appt for you is to get a family picture of any genetic conditions on either side. We have some relatives with aspergers and learning difficulties. He also took a full preg and birth history and asked questions about feeding and delevlopment, then he checked D over for outward signs of genetic consitions. ON that topic we got back a letter from geneticist today and it was less reassuring than I had hoped it would be. Letter said 'it is likely that .. has a genetic cause' Thats rather different from having been told he couldnt see anything genetic..but letter was also about her enrollment in the DDD study so I hope likley is to be taken loosely...Good luck with the appt

Get well soon wishes for all the little ones.

ON the weight issue. Ive been on a site called my fitness pal for 5 months and getting some brilliant results. Its basically a calorie counter and exercise logger. I ahve cracked some big eating issues with it - plus its free!!

hazey and missmavis I hope your DS's are feeling better.

Can I please creep onto this thread? I've mentioned it in a thread I started but DS has just been assessed as being delayed across the board. He is at 4.5-6 months in ability but just turned 9 months.

He is hypermobile which they say goes to explain some of his delays but don't answer all the questions. We are seeing a physio next week and also having another meeting with the paediatrician to see where we are with other referrals. He is going to see a neurologist, opthalmologist and audiologist.

I think I could easily post a whole stream of random thoughts abut what, why, where etc but really just wanted to come and say hi, can I join you all? No idea yet if there is going to be any diagnosis, if there is anyithing he will need bar a bit if help but I know we are on a bit of a journey and somehow the 'don't worry he'll catch up' comments from RL aren't proving very helpful.

Hi ouch welcome on here. I have a daughter - now 2.5 - with severe delays across all skills. Good you've got some referrals coming through and well done for taking it up so early. You get bonus good mummy points for that There is that period you feel like youre nuts because everyone else says 'oh its all fine' when you know theres something that needs a specialist to have a look.

I hope physio next week will be helpful

Thanks for the welcome firsttimer. How is your Daughter doing? I've read some of your posts on here but my head is foggy and I can't remember how things are going for you now.

Pleased we have noticed now but no brownie points, he had an anomaly during pregnancy that they thought had resolved itself (perhaps not....) so I guess I've always been checking to see how he is doing.

Having said that, only need to take a look at him against his peers to. Know that he's a wee but off!

Hi First thanks for reply. I am keen to get the right balance with physio and other clinics so your imput is valued. I am also aware he gets freaked out about all stretches and just the physio in gerneral dont wnat to completely scare him! Physio said she would refer him to O.T and i think ENT are getting us an appt with SALT so we are heading in the right directions also waiting on orthotics.

Someone did say to me i am his biggest tool as he trusts me for swimming and stretches so guess i will go with that for now. Seeing paed this month about mri and he is having x rays as well to look at bone density.

Hi ouch, my daughter is 2.5 but developmentally about 12 months old (speech and lang even less developed than that). She does not seem autistic (she is very interactive and sociable in a way that doesnt look like autism) or disordered (shes not clumsy but more slow and not very able) So she is just very delayed and described by peads as a mystery. Sat up just past 9 months, pincer grip about 14months, crawling at 16, walking at 29 months. Still doesnt really point, or use any gestures. Other than this she is a happy healthy little girl.
She was extremely passive and withdrawn between 9-13 months, her pincer grip got her to become more engaged. With walking now she is making new leaps forward with her interaction - shes seeking out people and experiences in a way we hadnt seen before, shes starting to play (its the weirdest thing when a child doesnt really play - you cant quite put your finger on it but it is odd - then you see them with other children and go ah-ha!)
Its been a really really tough year and a half, but I am starting to face the future with renewed hope. Not that shes NT, but that she will be OK somehow. She's walking and I think she will talk one day and shes lovely and sweet and fun. But it has been a long hard road. We have physio (may soon stop as her walking takes off), portage, SaLT and OT. Of these the OT is the best at the moment. We are also doing ABA. We have been lucky enough to be in a great nursery, private but dead keen on doing their absolute best. So shes happy there 3 days a week and I am happy with the care and play she receives when shes there. I think this niederfamily.blogspot.co.uk/2010/10/amsterdam-international.html
is the best description of what life has been like for a long time. Even though we are now slowly and carefully finding our way into Amsterdam.
Tell us more about your son when you get a chance.

Mavis - just teared up over your bathtime post. We had similar recently when DD started to play in the bath instead of resist, scream, go rigid and fight a quick sponge down. Just seeing her in a bathtub, splashing and grasping at bath toys. I wouldnt have been able to pin point it before but when it suddenly happened we both had lumps in our throats. A happy bathtime with play and enjoyment. We got our first one at about 27 months.