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?

[Hayley16]

Hi all
Thought id check back in & see how everyone is doing :)
Managed to stop stressing over the mri results & have just put it to the back of my mind :) well sort of...i am still counting down the days! Only 27 more to go!
We have been waiting near enough a year to get freddies heart rescanned & we ended up missing the appointment. We hadn't recieved a letter to say he was meant to be having it & now they cant see us again until 3rd october! So more waiting.
Im starting to get slightly concerned over DS behaviour. Im worried hes showing signs of autism. Does anyone have any experience of this? I found a checklist on google for signs of it. These are the signs hes showing -
?Does not consistently respond to his/her name.
?Cannot tell you what he/she wants with words or gestures.
?Doesn?t follow directions.
?Seems to be deaf at times.
?Seems to hear sometimes, but not others.
?Doesn?t point or wave bye-bye (past 15 months) or use other gestures such as shaking his head ?yes? or ?no? appropriately and back and forth in conversation
?Has odd movement patterns such as flapping arms or shaking body, especially when excited
?Seems hyperactive much of the time; is always ?on the go.?
?Doesn?t know how to play with toys. Might spin or line them up excessively.
?Doesn?t smile when smiled at.
?Seems to prefer to play alone.
?Seems to be in his/her ?own world.?
?Shows very little interest in other children
?Has delayed speech-language skills when compared to other children of the same age
?Is a very picky eater. May eat only 3 or 4 different foods.
Going to mention it to paediatrican when we see them on the 5th sept but i don't know if they would look into it until hes older.
Hes also very noise sensitive at the minute. Which is a total nightmare with having a noise 2 yr old in the house to!

hanbee
Im shocked that they think your ds is only at 12-14 mnths. You would think with him being up & about & walking he would be at an older age. I hope you get some answers soon

chundle
Cant believe some people have put your dds problems down to your parenting. I always felt like that when ds was a baby like maybe it was my fault & i wasnt spending enough time with him its an awful feeling & must of been made even worse for you by someone actually saying it to you :(

I hope everyone else out there are ok & are getting the help they all need x

[EllenJaneisnotmyname]

I'm just a lurker, but wanted to respond.

Firsttimer, it sounds like you're handling things very well. I can certainly empathise with the 'new normal!' But it doesn't stop things getting on top of you sometimes. A whole year to wait to for the next brain scan sounds awful. I suppose it needs to be that long to see what changes?

Hayley, you do have a lot of red flags there. My DS2 has ASD, but it is a developmental disorder, which means that some things are more delayed than others. So the signs you are seeing may mean GDD if more than one thing is delayed but if other aspects are developing more quickly it may be ASD. You can also have ASD co-morbid (together with) other DXs. Sorry not to be more reassuring. Do ask your Paed.

I haven't read the whole thread, just dipped in to recommend some Hanen books earlier. How old is your DS? It's always worth writing your concerns down and maybe keeping a diary of behaviours to discuss with your Paed. If you have things in writing it makes it easier to remember everything during an appointment. I would always get a bit emotional then find I'd forgotten what I wanted to say. Your Paed won't be able to DX ASD without more time and observations and maybe a multi disciplinary team of other professionals.

In the meantime, I think it's generally accepted than treating your DS as if he does have ASD won't harm him if he doesn't. Have you had a look at the Hanen book, 'More than Words?' It's similar to 'It Takes 2 to Talk' but from an ASD perspective. I'm not sure how different it is to It takes 2 but it was my bible in the early days. (DS2 is 11)

[Chundle]

Thanks guys. I expected to be blamed a bit for dd1 during her ADHD dx but I never got any of that then! It's just with dd2 they question the way I play with her ffs but you need to co-operate! But at least we hav portage starting in september

[EllenJaneisnotmyname]

Gosh, Chundle. I hadn't read back, but that's horrible. It's going back to the 1950's terminology of refrigerator mothers! The lust of dyspraxic traits has so much crossover with ASD, it seems strange to mention one and rule out the other this early. The psychologist is obviously too used to seeing parenting problems, the Paed is the one I'd go with.

[EllenJaneisnotmyname]

Oops, list not lust.

[used2bthin]

hi all, just posting very quickly as am off to work but wondered if anyone would mind telling me about how long you have had to wait for appointments etc. I was talking to a friend last night who is a nurse and she was horrified at the gap I've had between being told dd's eeg is abnormal and seeing a neurologist. I was told end of june and the appointment is two weeks time. So around a ten week wait I think and all the time wondering what the abnormal result means and what they are looking for on the mri which will be october. I rang and said oct is too long can I see the neurologist before that which is how we got the aug appointment but I think my friend felt that if I'd complained more we could hasve been seen sooner. It is and has been a horrible wait but I thought it was probably just how it is, what do you think?

BTW I did speak to dd's hosp consultant and she gave a bit more of an idea about whats happening and said to tell her about any episodes dd has and she would see if the neurologist would bring the appointment forward. Of course nothing much has happened.

[Verahaspurpletwuntypants]

6 months for pead
4 months for salt
3 months for original audiology
3 months for ECG and bloods
4 months for MRI with general
3 months for results

[hanbee]

Wait times seem to vary from one area to the next. In our old area we waited:
2 months for paed
2 months for physio
15 months for SALT
9 months for feeding assessment
3 months for orthotist (piedro boots)

In our new area we waited
2 months paed
3 months SALT but got a group makaton course within a couple of weeks
A few weeks for physio
Still waiting for orthotist and hearing check, 2 months to date.

[used2bthin]

Thank you for that. It does vary doesn't it?! We only waited a few weeks for SALT but they did say that was just luck and usually its months. 4 months is around the MRI wait we will have had. But 3 months after the MRI for the MRI results?!! That must have been awful and I need to check with the neurologist how long ours is as I have just been willing october to come so I can know more-actually it could be longer.

[1980Sport]

3 months to Paed
3 months from Paed to Dev Paed & Team (SLT, OT, Physio)
3 months to MRI - 4 weeks to results
Mostly 3 months for any further blood results
EEG & Genectics referrals were very quick 4 & 6 weeks
Chair - 4 months
Wheelchair - looks like it'll be about 6 months

[crazycatlady]

Hello, I recognise some friendly faces from the genetics thread .

hanbee you mentioned that you've moved areas, how did you manage this with all the referrals and appointments etc?

We've just started on this long road with DS (5 months) who is developmentally delayed, has reduced tone, some dysmorphic features, we're not sure how good his hearing and vision is, has torticollis and plagiocephaly, and hypospadias. We suspect it's something chromosomal although no-one will say as much.

Saw paed for the first time in the first week of August. We now have referrals for neurology, genetics, MRI, physiotherapy, the lot really... but we're moving in October and I'm not sure what the best course of action is. Paed said we can stay under his care at the Evelina (St Thomas's) if we want even after we move as we'll only be 30 mins away on the train, but if DS is needing twice weekly physio, and then OT and SALT to come I'd rather do these locally in Surrey where we are moving to.

Any tips?

[Chundle]

I'm going to stick with paed Ellen and try to ditch the pysch somehow! Lol.
Gosh our waits here are 9 months physio and 3 years OT!

[hanbee]

Hi everyone

Crazycatlady - moving and the referrals were hard to manage. We made it difficult for ourselves as we moved twice in 3 months - Buckinghamshire to Worcestershire to Cornwall!! When we arrived in Cornwall I immediately got a doctor and requested the health visitor came asap so I could get her to make referrals, I also made an appointment to see the GP so he was aware of our situation he chased the referrals up. It did mean that we probably missed out on about 4/5 months of support but figured our new life would be so much better for our DCs that it was worth the difficulties that caused.

[crazycatlady]

Oh my goodness, hanbee we're doing almost the same as you, but not quite as quickly. We're moving out of London to live with family in Surrey, then all moving on together as soon as we can find a big family place in, you guessed it... Cornwall! We are looking to be somewhere between Liskeard, Bodmin and Wadebridge.

DS's arrival and our realising that he's likely to have some additional challenges in life has been a huge catalyst to us getting our arses in gear and making the move.

Have you found the system and infrastructure in Cornwall is well set out to providing for your child's needs? That's my one concern moving away from the south east where we have very easy access to care and a lot of choice.

[hanbee]

Crazycatlady you may well end up not far from me. Pm me when you move down!

So far I've found Cornwall excellent. There is less choice in terms of special schools or area resource bases but what there is is very good. The childrens centres have oasis groups for families with children with additional needs and these are regularly visited by SALTs and parent to parent reps. I've found them excellent and a great informal source of advice and support.

I think a smaller population means that although you have to travel for things waiting time, time you get with people and the quality of care as everyone is less stretched, seems better. A more active outdoor life is also a massive bonus and is helping DS1 progress with his motor skills.

[used2bthin]

Oh my goodness 4 weeks wait for you for the MRI result too. I have no idea what made me think that it would be quick considering my experiences but I thought we'd find out the results almost immediately. I will ask the neurologist about it.

DD had an MRI before we were disharged after she was born. We had the results three days later by phone! That wasn't a brain MRI though and it was one thing they were checking for so maybe different. Oh dear this is going to take up this year then really in terms of diagnoses and results.

We have moved earlier in the year and are moving again soon-hopefully we will stay in the next place. We've been in the same county and still some of our professionals have changed due to area boundaries. Its been ok though, hard work but wasn't a way around it really.

[Firsttimer7259]

Hi Ellen I wanted to thank you for the link to the cheap Hanen, it has been excellent!
The wait seems long but its more that the diagnosis is to compare the 2 MRIs and also look at her progress over the year. I think that if the areas were not normal she wouldnt be making progress. We are still waiting on something in writing so this is over the phone.

We had initial visit from visiting teaching service today. They will come every fortnight for a bit and help us develop play and activities for babygirl. I think it will be good. I am sometimes a bit clueless as to what to try with her.

We had physio yesterday, again good. they are trying to get us on to cruising now.
Its all good but I always feel so flat afterwards. I think because she's making so much progress part of me is hoping they'll just say 'she's fine now you don't need any more help.' I know thats not the case, shes still delayed but.....I am starting to have this theory in my head that she was tired and bored at 9-12 months (she had trouble with her sleep then) after that she had a nasty ear infection which possibly affected her balance. So the delay is just due to that...is that even possible???

The other part of me thinks, she has LDs (just like my sister who has dyslexia and LDs). So she'll catch up developmentally and yep shes smart but when it comes to school she'll struggle just like my sis did. Maybe by catching it this early we can help her more and keep her self esteem more intact than if she spends the first years of school failing at everything. But its a long road ahead.

In terms of waiting here's our experience:
1st Pead: 5 months (but there were some mix ups)
Physio 2.5 months
SaLT 1 months
VST: 2 months
Blood tests: Ive lost count but lnger than 8 weeks for first lot
MRI: 16 days till called for results and got them verbally
Time from booking to MRI scan: 1 month
Occupatinal therapist: still waiting
we now have 2-3 months between pead appts

[EllenJaneisnotmyname]

Hi firsttimer. I think my sanity was preserved by not looking too far ahead. Just the next year or next milestone. What ifs aren't much help and scaring yourself looking far into the future isn't constructive either. Have a plan but only short to medium term, is my advice. Your visiting advisory teachers sound like portage. Good for giving you ideas how to improve development through play. I'm glad the Hanen is being useful. It became like second nature to me after a while, getting learning opportunities in any situation.

[hanbee]

EllenJane - really good advice . I just wish I could always remember to follow it!!

[EllenJaneisnotmyname]

Hi Hanbee. Can't say I always follow it myself!

[hanbee]

Oh and had another visit from the physio, she's coming every two weeks which was more than I expected. She has given between 13-16 months for DS1s motor skills not 12-14 as she said last time. Still behind by loads but I'm just viewing it as a benchmark against which to measure progress.

Got next appointment with SALT, 2 months after the last one but she's coming to us - yay!

[used2bthin]

firstimer, it is a lot to get your head around and tbh the one minute thinking things are really not that major and the next thinking this is forever are things I have had on and off for a few years now, I think it is natural to worry about the future but really good advice to just look as far as the next year- I am going to do that too.


Thanks re waiting times. I think that the wait we have had is not abnormal. The problem is that after having the possible diagnosis by letter, we've not spoken to the neurologist who analysed it and ordered the MRI so don't really have much idea what he is thinking. Perhaps its just as well though!

[used2bthin]

We meaning me and DP. And the rest of the family for that matter, its tough on everyone and I tend to play it down to my parents as they are worriers at the best of times.

[Firsttimer7259]

Hi all, weird day, I guess I have spent it wondering about DD and how the next few years will be. Wondering about her toys, her abilities and all of it. As tho I could just think or research my way out of this. Meetings with the professionals tend to leave me feeling high and dry like this. I get all excited thinking I am going to learn something about how to interact with DD or have something revealed as to what's going on with her and why. And then nothing...by which I dont mean nothing happens or that the professionals are somehow failing us. They are not and I must say that my experiences have been really good so far.

But nothing as in progress is incremental, no one is going to come up with some great big answer, or great big solution. I guess people on here know that all too well (and I appreciate the advice) but it takes me ages to get back into a zone where I am coping with this but not ignoring it.

So my big question to you all: how do you deal??

[1980Sport]

I cope by not looking too far ahead, trying to have something small but nice to look forward to every few weeks, balancing healthy and unhealthy research as in looking up new exercises/games etc v looking up random syndromes and then just keeping up with all the exercises! And of course, you guys really help me cope - thank you btw :)

Used 2 I have to manage my pils - they are massive worriers! I've sat hugging mil while she's crying her eyes out thinking 'really is this how it's supposed to be' and they still haven't faced up to the fact there is no magic cure!