please give your opinions on what we should do next.

[pantspantspants]

We are reaching a dead end with the doctors on what they think is wrong with my DD2.
I'm just looking for any clues on what you guys think she might have so we can get the doctors to look at different areas.

My daughter is 11 months and currently fighting chest infections after chest infections, quite often ending up as pneumonia. She hasn't put on weight in the last 3 1/2 months and isn't eating well (i.e. still at the very start of weaning)
she has been assessed as having early signs of developmental delay, she has only recently been able to sit for short periods of time unaided, doesn't like eye contact or noises, doesn't babble, doesn't roll over, she seems locked in her own little world, she's quite happy on her own but doesn't interact with toys.

she has been given lots of blood tests etc and her actual brain activity is good, but all doctors seem to say is lets see what the future brings.

we are getting quite desperate because I would like to know how to help her and know what to expect in the future. Also we avoid friends and family because they seem to think because she hasn't got a diagnosis she should be developing normally. we avoid going out all together because we get strange looks from people expecting a smile from her or a reaction, I think they think we have drugged her.

doctors have practically abandoned her until further assessment when she's 18 months.

if anyone has any clues please?

(this it also posted in chat and parenting)

Sounds very frustrating for you - have you seen a paed or neurologist - just wondered if she has had an MRI scan?
Did you have a difficult birth with her or any other factors that could be followed up that haven't been already?

My dd's difficulties became apparent when she was about 11 months too - because all the other babies were getting around and dd could barely sit. We knew there would be problems because she was starved of oxygen though so were expecting it. Still doesn't make it easy when you are with friends and other kids though - I do know the feeling..

could you ask for play therpist to come in and do some stimulation work with her, just because she doesnt respond in ways docs think, doesnt mean she wont enjoy/benifit from it.
Labels are very helpful especially for proffessional and others but you know her best. You know whats best for her and what she might like, sit down and think about what it is, you feel would help and ask for it. Its too easy to end up following what proffessionals think is best, whgen they dont know the child at all.
Can you get second opinion? Have you had a look at BIBIC?
Hope your ok, keep strong

oh and do go out, you will grow a thick skin but takes time, and bugger everyone else she is important, not them.

If they have said she has developmental delay, what are they doing about it? Have you had referrals to portage, physio, SALT, OT etc to help on that front while they work on a diagnosis, they shouldn't be leaving her till she's 18 months without doing anything at all. At least if you are doing something to encourage her along you would feel a whole heap better. What about geneticist, anyone suggested that? Sometimes it's important to rule things out too. Yes, as lisa says, do go out, staying in won't do you any good. Do you have any childrens centres near you, sometimes they run groups that you may be able to go to.

we see a pediatric doctor who spends most for the session making high pitched babbles to her, which as she struggles with everyday noises, really distresses her. Then saying see she is communicating with you!

she was scanned for brain activity a couple of weeks back but I'm not sure if it was an MRI or not, they sedated her and took her from the ward (apparently most parents aren't allowed to go with them)

she did get stuck at birth because she didn't have her chin on her chest and was rotated slightly, but I managed to get the out in the end. she was born very bruised.

Right from her birth I felt things just weren't right with her, she was very unsettled, not looking around not hungry. I was incorrectly diagnosed with PND so its took me a while to convince them i was well and happy but my daughter was the one needing help.

we don't see anyone else. her developmental delay was something i saw on her notes, we weren't informed of this. when she is in hospital they seem to think she is like this because she is unwell with her chest infections and will improve when she recovers, but she doesn't. but by the time i can see the doctor as an out patient she is unwell again.

It looks like you're in for a fight with the professionals to get what your daughter needs. It is completely against the rules not to keep you properly informed of what is going on - I think you will have to get your claws out. But please, as the others say, do take her out, who cares about some idiot out there

ok, get the video camera out and start a daily diary, then you can show them what she is like when she is well. I would go with a list of things you want done. It takes time to grow a thck skin, but keep fighting, keep chatting on here too. Where are you? maybe someone here knows a good friendly place to go nearby.

It takes a while to learn to ignore the expectations of others whn you have a child with delayed development but go out anyway. It will do you all good.

As others say get her into the child development specialists; occupational health can assess her for a chair that will enable her to sit, protage can give very specific play programme to help her etc etc. Request referrals as others have said and don't give in till you get them. If getting deadended by your paed ask for another paed opinion.

Good luck

Okay, some things you can do.

Firstly, whatever else you do, don't stop going out. It was very very hard work but in hindsight the fact that I took ds out nearly every day to get used to the world and other people etc. has meant he has much less problems than he could have had. It also gave me an opportunity to be approached by people who DID understand and had advice or knowledge that helped.

Secondly, get in contact with your local surestart or children's centre. They run courses in parenting in general that will give you ideas on how to stimulate your child. For most mothers it comes naturally and I expect it does to you, but when your child isn't reacting as expecting it can feel draining and unrewarding and you might give up sooner. These courses are good at giving you ideas.

Also, many children's centres have outreach playworkers who can come out weekly for say 10 weeks to play with your chil, giving you a break and also ideas. It is also a way of having 'professiona' involvement and these people are excellent at trouble-shooting and also pointing you to other services as and when you need them.

You can also ask for an appointment with the Special Needs Health Visitor. Say you feel you need more specialist support.

Write to ther person who's notes you saw and ask for a letter of her issues/problems in writing. Say you need it for 'evidence' but don't say what for.

And finally, this is absolutely the most important thing you can do:

Write down every single contact with every single professional or lead with some details. You can often use this information as leverage in the future.

hth

Pants, I sympathise with you completely - my dd2's diagnoses were a long slow process of missing milestones, slow progress, and mystified doctors.

Unfortunately they probably don't know if they are looking for a specific cause or if the delays are just down to your dd's poor health over the past few months, so waiting might be their only option.

However, as other posters have pointed out, you do have the option of giving your dd whatever therapeutic help you can in the meantime, in the form of play stimulation, getting referrals to ot or physio groups, etc.

Also ask for Portage, the home learning service, they come from very early on.

And good luck, come back and let us know how you get on.

I agree with everyone, you should go out as much as possible. My DD has undiagnosed developmental problems and every day we get people trying to talk to her etc (she is 3.5 and cannot speak really) and we went through all the problems at toddler group (people trying to discipline her, staring etc) but I am glad we just got on with it and got out.

It DOES get to me but I just ignore others and think of DD, she is just who she is and people can think what they like. It helped to go out and meet other people too.

HI There, I am sorry to hear that you are so worried about your dd.

My dd is 2.3 now and she has developmental delay (10-15months) and we are just starting to get some positive results from therapy. I wish we had started therapy earlier but we were 'waiting to see how she progressed...'

I always knew dd was developing differently. It took me ages to get anyone to really listen/take me seriously - then at 18 months we were seen 'urgently'.....NHS therapy oficially started in Jan when my daughter was 2. (although we have has some speech therapy before that)

I am now teaching my daughter to roll over even though she can walk! I have to get her to do tummy time now because she would never be on her tummy as a baby..... Its like I am helping her to fill the gaps in order to progress...
My dd didnt babble until a few months ago.

I wont bore you with the detail of my dd but I have learned how much you can do to help at an early stage...

Therapy gives you realisic goals and special toys appropriate to your dd. So you become really good at helping your dd. This makes you feel better and more confident when facing DRs, assesments....Also the therapists can be really supportive and encouraging for you too, sometimes picking up on things that Drs dont notice!

I made the mistake of worrying about the gap and what other kids were doing.....

The reality is that my dd has made huge progress and although still behind her peers in some ways, the gap is closing in others....

I found the helplessness of it so upsetting. So I would take all the advice you can from MN. The ladies here are amazing and have brilliant ideas! This SN board has got me through this last year just keeping me busy reading experiences and trying out new ideas. The search feature is really good! You are not alone.

Just don't be fobbed off. Waiting does not work at all.

Push to get tests etc done now if you want - rule out as much as possible. It can help with moving forward. You may feel like you are at a dead end but you are not. Drs are not always right - they don't always have the answers and in my experience have found they can make mistakes!

Good Luck

I would agree - don't be fobbed off. Re the recurrent chest infections have the docs run bloods to check immune system. If she's getting repeated infections ask GP to refer to Gt Ormond Street as not many places run these sorts of tests. GPs can refer directly for immunology.

It may be that developmental delay is caused by repeated infections or they could be unconnected.

My DD had repeated infections for years and has unrelated epilepsy. No one looked at her repeated infections but just treated current problem. Got so fed up by the time that she'd reached the age of 7 that i went to GPwho looked back through her file and referred immediately. Also once under GOS they are more likely to refer to other departments at gos who may be able to look at possible reasons for developmental delay.

Best of luck and keep fighting for your DD - I've learnt from my own mistakes of not pushing hard enough. Prior to GOS I was repeatedly fobbed off but they've been brilliant. (If there is a long waiting list for immunologist you can see them privately for initial consultation and then go straight into NHS - i think its about £300.)

Hope you get some answers soon.

I agree wholeheartedly, don't stop going out as you need friends.
I also agree about keeping a notebook of every single contact with professionals, with dates, names etc. And I would also say portage is a great help. Angrywasp puts it all very well. My dd was 12 weeks old when problems were first pointed out and it took till she was 2 till a diagnosis (of sorts) was reached but by then we had had physio and portage. Keep asking till you get help.

hi everyone, thanks for your advice, I've felt so isolated the last couple of months, it felt like no-ones ever been in my situation. so, its nice to meet some people are a little more accepting.

Sorry for not replying sooner, the internets been down and DD2 been struggling to sleep.

I've read through you advice an i will definitely be recording her when she's well so they can see and also asking for a second opinion and some support for her to help her develop while I wait for the second opinion.

hopefully I can start to ignore others in the street and get out a bit more.

hi everyone, thanks for your advice, I've felt so isolated the last couple of months, it felt like no-ones ever been in my situation. so, its nice to meet some people are a little more accepting.

Sorry for not replying sooner, the internets been down and DD2 been struggling to sleep.

I've read through you advice an i will definitely be recording her when she's well so they can see and also asking for a second opinion and some support for her to help her develop while I wait for the second opinion.

hopefully I can start to ignore others in the street and get out a bit more.

Thanks once again

Sorry, didn't see this earlier.

All sounds v familiar I am afraid.

OK, first thing is that though I really really don't want you to stop pushing, you have to push and you are right to push - at the same time I found there is a limit to what help you would get even if they did give a proper assessment and diagnosis. It's not like it's going to be the magic gateway to therapy on tap. Not at 11 months. I found though there's a lot of chat about "early intervention" in practice the system is set up to manage the majority of cases where firm diagnosis is made when it is easy to do - approaching school age. Before that, even if you do get a diagnosis, unless there is a medically treatable cause, ime you won't get much help because they aren't quite sure what to do with them this young. Portage is useful (and you can self-refer for that right now, there are waiting lists so it's worth doing) but otherwise it can be patchy. So don't beat yourself up that you are failing her in some way.

Second thing is that they defer investigation/diagnosis because it is genuinely difficult to tell at this age because NT development itself is so varied - babies tend to pick one thing to major in and focus on that till they have it cracked then move onto something else. So ten kids of the same age as yours will measure differently depending on what you test. That doesn't mean you are wrong in your concerns, not at all. It just means the professionals like to put it off till they are comparing with something more concrete.

Having said that - it's perfectly possible to do a griffiths' or a baileys' (I may have spellings wrong - the first one is developmental, the second more general/OT) at this age. And it's not as if it takes vast resources to conduct so I'd push for one or both of those, it would be entirely reasonable. The results are, for the reasons above, a bit ropey at this young age, but I found having some medically respected numbers in black and white made a VAST difference to how seriously they took what I was saying. Didn't bring instant answers, but it was the start of a sea change in attitude. Somewhere in DD1's notes it must say: "mum is an arsey cow but annoyingly often right."

Re: smiles/reactions - how far has her sight and hearing been tested? What is your gut feel about it? I found understanding this and seeing the world from her pov made a big difference to my interaction with DD1.

Oh, and ikwym about the PND. They tried to tell me I had muchausen's by proxy.

re the feeding and repeated chest infections - am pretty suprised you haven't been referred to a feeding SALT to assess her swallow. At any point has aspirating been suggested to you as a cause? Don't want to alarm you but this was what my dd was doing - basically swallowing liquids into her lungs and thus getting lots of chest infections.

Maybe its not that - in which case grand, rule it out. But deffo worth checking - there are some simple obs /swallow tests that can be done v quickly in the first instance

If this is the case there's various things to try to rectify / prevent this from happening.

Ditto what everyone is saying about accessing early intervention. Are any baby groups run at your local CDC (child development centre) Also could try and self refer for portage. The charity KIDS is worth checking out. We went to some of their groups / sessions v early on which were great. There were little ones there who had no diagnosis

We also went to a regular baby music group / baby signing which was good. Baby sensory is another good one. One of our KIDS workers left to set up a franchise of this and stll comes and does these sessions at SN playscheme my dd now goes to

We self referred to conductive education as well when dd was 8 months - I think gp just had to sign the form but they did their own assessment of dd

Sorry you are going through this. Its v overwhelming when so much is going on and you feel fobbed off by professionals (we have also - even tho we got a diagnosis v early on)