Coming to terms with diagnosis of "severe GDD"

[mm22bys]

Hi,

I have posted here before but not for a while.

My DS2 is 10 months but has been developing very slowly, and today he had the second of his assessments, and he received a diagnosis of "severe GDD" with the skills / ability / understanding of a 3 month old.

We have also been told that he will need help for the "rest of his life".

Obviously we are finding this all very hard to come to terms with. We feel that he is behind, but that he can do more than a three month old.

He has been offered Phyiotherapy (which are doing privately anyway, and he has responded well to), Occupational therapy, speech therapy and portage (but don't know how long all these will take to come through.

We don't actaully have a definite diagnosis, but were very helpfully given a handout on "syndromes without a name", and he has been referred back to his neurologist (who in June told us he was clear neurologically, and had a "mild developmental delay").

We feel that the dr we saw has effectively written him off, and the grand old age of 10 months, and that she is just plain wrong about his skills / abilities / understanding.

Has anyone been able to prove the "specialists" wrong, and have your DCs actually made good progress? We just can't believe that DS2 is at where he is going to be for good.

Thx

I am so sorry to hear this.

We were told our DD wouldn't walk until 2. She walked at 13 months. Not in the same scale as your child but just to give hope that sometimes the "professionals" can be wrong.

Also wanted to bump for you to get some better help.

Thanks NAB3, after today I would be over the moon if they had told us he would walk by two!

We are all determined to prove them wrong...

I know virtually nothing about gdd, but can you push for a second opinion?....

and bump from me too

We're seeing the physio tomorrow, she has indicated that she thinks he will crawl and walk, but noone has been as negative as this one dr today. I'll believe more when we see the neurologist again, in the meantime we are not going to write him off!

Thanks for the bump....

There's always room for hope when it comes to the development of children. It seems like an unbelievably negative assessment for a child so young if they have found no genetic, neurological, muscular, metabolic or any other cause for your child's delay. It does mean you will benefit from all the help that the NHS can provide, though, which can only be beneficial in helping you prove that particular specialist wrong.

what is GDD?

NAB3, global developmental delay.

Hels9, that is what we thought, they can't say exactly what has caused these problems, but hopefully the further neurological tests will give some answers.

Thx

I am really sorry to hear this, it must be so hard for you.
I think you should get another opinion. It seems a bit strange that a doctor could just say this about a 10 month old baby, withuot any medical reason.
Fwiw, my ds has been diagnosed with gdd and asd, and the doctors can't make up their minds about how delayed he is, and he is 30 months. I have heard everything from 18 months to 6 months delayed, from three doctors.
I would definately get a second opinion.
Also, I know it must be devestating, and sounds to you that they have given up on him, but they can't have otherwise he would not have been offered any kind of therapy.
I do hope that everything gets better, and give your baby a (((((((((hug))))))))from me.

That's pants.

My DD2 had severe GDD, but has improved beyond all belief, probably largely due to input from certain services. Portage in particular are fab.

I would say take the doctor's opinion with a large pinch of salt. Yes, they are professionals but they do not have crystal balls, and with no definite diagnosis it does seem rather premature to make such sweeping statements.

I was very chuffed (and smug!) when DD2 walked into the paediatrician's office last year. Her jaw nearly hit the floor - she didn't even think DD2 would sit up until she was at least 2. She walked at 2 yrs 5 mths

Our children are amazing, aim high and be strong.

Hello, my god this sounds so familiar. Why do they always do that doom and gloom thing - are they taught special lessons in Med School on how to really upset people???

Our Paediatrician drew us a special little chart on a scrap of paper. He said this is normal children - the line goes up steeply to age 20 then levels out. This is your daughter - the line goes up steeply and levels out about halfway up.

But we did prove them wrong, and I'm sure you can too. At 12 months my dd couldn't sit up where most babies sit at 6 months. My dd is now 7 and rides a bike with no stabilisers.

If you need further support, this org are pretty good (London) www.parentsforinclusion.org

Sounds as though yolur dr has been to the same school of negativity as ours! When ds was diagnosed with gdd at age 3 I felt that big decisions had been made after a 40min assessment in which ds performed like a child I didn't know. The news was broken with a sledgehammer and the way it was handled still upsets me. When we met our portage worker and ed psych they were so much more positive and got to know ds really well, so I felt he had been more fairly assessed.
With hindsight our pead was quite astute in her judgement of ds's delays and to be fair at the time she didn't make any statements about long term, just said she couldn't tell where he'd be in a year's time.
Was your leaflet useful or was your comment tongue in cheeck? or was it useful? DS had chromosomal tests and other bloods, then we just got a letter saying 'it was unlikely that the cause of his delay would ever be known', nothing more so when others talk about their children's syndromes/ cause etc we are in a sort of no mans land.

People are always ready to tell me about relatives whose children 'caught up' and 'proved everyone wrong'. So there seem to be plenty out there! and you never know. My ds progressed well until around 18 months but has stalled there for the last few years, he is developing but it's nowhere near the same speed as his peers.
My only advice would be to invest time and energy into those who work fairly and positively with your ds, keep contact with people who aren't to a minimum.

Thanks for your responses. It is especially encouraging to hear of those whose DCs have proved drs wrong.

We were told with a sledgehammer too, and then we were told that we would be seen again by the paed again in six months time. She gave a big box of different leaflets on SN stuff, but neither DH nor I have had the guts yet to look into it. It really is a world we don't want to enter.

When they told us about the therapies, the most unbelievable thing we heard was this - that initially he would be seeing the therapists once every two or three weeks (not obviously nearly enough) but if he didn't respond it would be cut down to once a month. Isn't that working the wrong way?

On another front we saw our private physio today who was much more positive. She said to us that she has never felt like DS is a child who wouldn't walk. That was encouraging.

Hopefully the neurologist will know what other tests to run, I still don't know how we can have such a negative outcome presented to us when the investigations aren't nearly complete.

Thanks for your responses, and it is great to hear of so many positive outcomes.

My DS4 is 2years 3months old. He too has severe GDD. He started crawling last Jan and he is now standing and cruising and the speech is coming. He was seen regularly by the OT and physio at the CDC until now when things have really taken off. He has portage and attends a theraplay group where he receives weekly SALTherapy and OT. He has had an MRI scan which has ruled out brain damage. He is due to have special inserts made for his shoes to help him walk. He already wears piedro boots and is almost walking. We were told he might walk by the age of three, I reckon he'll be up and about after Christmas

We had the GDD dx when he was 8 months old and my world seemed to fall apart but at the moment things are looking good.

Don't give up hope. The inital days of hearing the worst case scenario for your child seem unbearable but keep positive, it can get better.

You may find info about claiming DLA in your pack of leaflets. This is worth doing as it will help with travelling and care expenses.

When my dd was born they said she'd be a vegetable. Then she got infantile spasms so they said no chance.
Sure, her CP is very severe (can't roll, sit etc etc) but her intellect is fine despite all the terrible stuff you read about infantile spasms.
Never say never. Ignore statistics and concentarte on the person that is your child.
Another thing I always think, is that walking isn't such a big deal. Being able to use hands is way more important and being able to learn and understand.

Thanks Megalegs and NeedmoreCoffee. Megalegs it sounds like your son has made great progress. Can I ask what part of the country you are in? I am in inner central London and it seems the best we can hope for in terms of therapy is once every two to three weeks, and less if he doesn't respond.

We are trying very hard to be positive, and are not prepared to give up hope yet!

Other than the therapy sessions, what sort of work are you doing at home with him? Is it everyday? How long, and how do you fit in everything else? (I also have a 3 year old and I am really concerned about the effect all this is having on him).

I started to read the pack, but I must be in denial because it just made me cry. DH has said he is not going to read it till DS2 has at least seen the neurologist....

Needmorecoffee, it is great that your dd is still making progress. I think from what they said there are some concerns about DS2's intellectual abilities, and while he does reach for things that he knows are there, he doesn't use his hands very well.

Has anyone tried any non-mainstream therapies like the Institute for the Achievement of Human Potential?

Hi mm22bys. I posted on one of your other threads a while back. My little boy is 10 months (today) and he also has GDD. He is just starting to roll over a little more often. Perhaps we've been luckier with our specialists up here, but no one has been as negative as your docter was at the assessment. I'm so sorry that you're having to deal with such horrible treatment.

My ds also has FTT, and we're ongoing with help for feeding issues. He's not really getting the hang of 'solids' yet. He has dyskinetic/dystonic movements, social interaction issues & sensory issues. He's had various tests and assessments since he was about 6 weeks old, but as of yet they haven't found a cause. I think each time we go for an assessment, they give us more fancy words to describe something, but overall it seems that they don't really know exactly what's going on. They were going to start genetic tests when we have more 'symptoms' to see if they can find something to name what he has.

We have physio at home every week and they bring the equipment to us to use. He didn't make a lot of progress in sitting to start with, and at the moment isn't making more progress, but the certainly haven't said anything about not doing the therapy as frequently! We're also just about to start with SALT for his feeding, and are possibly going to have a hospital assessment for it as well.

Our neurologist doesn't really sound positive or negative about the situation. She's so far said that it's in keeping with a lesion on the brain, but they'll do another MRI later on to see if they can find anything (it wasn't noticed on the first one but he was moving a bit). She just orders various therapies to help where she thinks they can.

I still have days where it all seems very overwhelming and I keep thinking that maybe things will be fine... but I do think that I am slowly coming to terms with the fact that this is going to be a bit more long term and we need to stay focused on the positives! If you'd like to chat a bit more about things, please feel free to CAT me. I sent you a CAT a while back, but as it was my first one, it maybe didn't work?

Hi MommyupNorth,

your ds sounds very similar to mine.

I would love to chat further - I have sent a CAT request to you this morning, if it doesn't come through let me know and we'll figure out something else.

Thx for the offer, and good to hear your DS is making some progress,

Doctors are like lawyers, they always give worst case scenario to keep themselves straight. NO point in telling your client that he is going to get off when there might be a chance of a custodial sentence.

Same for doctors. Further, i believe a lot of medical "professionals" really dont know what to say about global delay. I mean what exactly is it??? Do they know, can they define it, its etiology?

So they waffle and because some of them are made of steel, they dont think sometimes what comes out of their mouths.

Finally, I think they make presuppositions about parents, based on presumed intelligence, financial background, etc. If they see a parent come in who they think wont be able to do much with their child, they give a woeful prediction. They forget how precious our children are to us, and how we will fight to the ends of the earth for them, if only someone would give us a roadmap. But they dont. Instead they give us doom and gloom.

Also if we fight, we find things out, things that other parents would like to know about, and this starts a vicious circle of cost, namely services. If a doctor tells you that your child will be severely disabled, as opposed to "if you fight, your child will have a great chance", well whats going to cost more? the latter of course. Further, you will probably tell others about all the wonderful help you got for your child and then those parents will want that help too.
So that costs even more.

Ever watched Lorenzo's Oil? If so, did you see the part where the parents challenge the so-called parent support group who basically didnt want to accept that they had a cure for their son?

If those parents had loped along with these parents who were ignorant they never would have acheived what they did. They didnt listen to anybody, not parents or doctors. They did their own research, to the ends of the earth and they found a miracle.

For a caring profession your ds's paed isn't showing that he cares,

DS2 at 1yr was just rolling over, only after he started walking did his physio tell us that when she first took over his care she wasn't sure that he would ever walk.

He is almost 5 & walks & runs & climbs he does have mild CP, gdd & autism BUT a delay is just that - a delay!
The gap between my ds's abilities & those of his peers has changed over the years & in some areas there really isn't much in it.
My ds will always have disabilities but he is able to do so much, have belief in your little boy & enjoy your baby.

The language that "professionals" use, the doctors teachers OT,etc is sometimes so abominable.

As you say, re: delay. What is the definition of delay - i wish doctors would think about the words they use and their definition.

There is a thing called NLP, Neuro Linguistic Programmming. It deals with the words we use and changing them to achieve more positive outcomes.

If all you hear from a doctor coming out of a diagnostic clinic with your "delayed" child or your child with ASD or CP, all you hear is "lifelong", "disability", "disabled", "cant", etc.

Our doctor spoke this way to us when our child was diagnosed. There was nothing offered but doom and gloom.

If the doctor had directed us to an organisation like TACA or DAN or a practitioner who treats autism, we would have felt so much hope, but we never got that.

In fact this deserves a new thread.

Hiya

have proven a specialist wtrong- one who said DS1 was all clear (sadly- HFA) and we are beginning to seriously doubt ds3's diagnosis as well, although we know he is disabled we think they have got the nature of it wrong- DS3 is clearly delayed (4.3 months, abilities of a 2 year old- language, functioning, continence etc). But he is far different socially than ds1 so we are wondering.

Of course denial is aprt of the shock of a dx so do bear that in mind- but IMO the aprents know so much mroe!

From personal experience, if the therapy is not forthcoming, can I recommend www.bibic.org.uk? They amnaged to get children in need funding for ds3 as we ahd such a long wait for funding and I put the developmental advances he ahs amde sqaurely at their door. AHrdly surprisingly as after SALT assessment that vanished annd he's ahd no other intervention whatsoever.

Thanks for your responses, and I did respond to the other thread.

To the pp who says maybe they judge the child's prognosis on the parents and if they think they won't / can't do anything for their child they paint the worst case? We have both been very proactive in getting DS assessed (HV just took a wait and see approach for too long in hindsight), and in instigating private physio when we found out how long this assessment would take to come through (nearly 3 months, a long time in the life of a ten month old!).

My GP is a lovely man but I got the feeling yesterday that he was preparing us for a big fall in terms of a final diagnosis (one of the hardest things about this whole thing - the only "dx" to date is that DS has a "syndrome without a name".) I stupidly asked him if he thought another specialist would tell us straight away if he found something to concern us about, or if he would wait for an appt. He told me that he thinks they may wait to tell us so that all the support is there. I told DH this, and he says it is pure speculation on the part of the GP, and I probably shouldn't have asked such a hypothetical question (we don't have an appt to see the neurologist again till early November when they want to run some more blood tests to see if the thyroid med is working. In the meantime we are in email contact with the neuro who says to date he hasn't found anything that isn't "right")

The resources aren't there. DS's speech "therapy" will comprise either one session every two months one on one, or one session once a month in a group. Of course a child needs therapy every day! No word yet on if / when DS will get phyio / OT / portage / referred to special needs playgroup.

We have contacted BIBC, and are being seen by them at the end of the month.

Oh I meant to add too - I don't understand the term "delay" either. To me, if say a train is "delayed" then it means it is late, but that it will still get there...

mm22bys if you need a chat etc when you're down at BIBIC do let me know- Mum lives down there and we're off there regularly at thsi time of year 9carnivalites LOL)_ BIBIC will vouch for the Peach family I am sure LOL (they have 2 of our 3 boys on their books).

In some ways we have the oppsoite problem to you- based on zilch we get told off for worrying about the future of the boys 'don't write him of fyet, he could still do X Y Z'- well that's all very well, but we need to plan now for the future, we won't be here always.

Hi

Sorry you are havinga rough time of it hun.

My DT2(3) has GDD, hypotonia, low tone. He never crawled till he was 16 months, walked when he was 20 months, sat with littlew support at at 15 ,only really started stringing words together when he was about 2( now can't shut him up)

He is a determined wee boy who lets nothing stand in his way.

I just wanted to share that with you in the hope that it would help see the positives for your precious angel- know how down hearted we mums can become LOL