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

Peachy that is a really kind offer, I may take you up on it. We are supposed to go in two weeks time, but depending on what we find out before then we may cancel. Not sure yet.

Jambuttie, it sounds like your DS is making great progress and doing really well. I thought DS had hypotonia for a while, but he is more stiff, mostly in the arms, his lower body seems pretty right to me - his legs so want to crawl but his arms just can't support him, and he seems to be in pain when we try to do the physio exercises with him. He's going to have nerve conduction tests at GOS to see what the story there is...

must say thant DT2 is in pain quite a bit too especially in his leg are- we can be grounded to the house with him whe he is real bad,however can get about in a buggy if needed.

He now tells us when he's sore and the degree of pain he has bless him, he asks for his buggy now too but only when really sore- think he see's it as defeat too, twins will be 4 in Januray and he doesnt want to eb a baby bless him

Good luck though with the tests

Thanks.

Oh poor DS! Do they know what the cause of the pain is?

All the best to you too,

no they dont say to be honest just to keep giving him regular paracetamol and nurofen

Hi there. so sorry to hear about your very negative experiences with profs. My DS was born with a severe gdd 10 yrs ago and we just had to mentally blank out the bad folk in the end, it was just too exhausting to dwell on it and I couldn't waste any of my precious time on them. Sadly he passed away when he was 3 but we still remember and keep in touch with the good 'uns, the ones who truly cared and went the extra mile. I now work as a Portage home visitor and am constantly amazed and thrilled by the kids i work with and the huge achievements they make, they're fantastic! i'm sure you'll soon find there are folk out there who can help and support you all as a family in a positive helpful way. good luck. x

Hi Loulou, sorry to hear about your DS. The physio came here yesterday, and she acknowledge they got sidetracked at the appt, and got too bogged down in talking about the negatives, and the medical aspects (tests etc), and that they didn't but should have talked about his potential. She also went through in detail how they came to their assessment of his abilities in the different areas, so I have a greater understanding of their concerns.

She still seems to think that the muscle stiffness in his arms is caused by faulty messages from the brain, but I don't understand this and will talk to his other physio today about it (she said that the more we move his arms the worse the stiffness will get. I personally think he is stiff because recently he hasn't been moving his arms enough).

When they left I felt much more positive, and am seeing the GP on Thursday (who hopefully will have spoken to the consultant and also get her feedback). We are still waiting for the test results (particularly the EEG).

They told us he's been referred to Portage, hope it help!

Thx

Hi

I'm sorry you've had such a tough time. My DS has so far proved them wrong. He was diagnosed with a chromosome abnormality at 1 week old which results in GDD and very severe disabilities. We were told he would be a vegetable, never sit up, never walk, never talk. So many people I have met have been told the same, its like they just cover themselves with the worst case scenario.

He's now 19 months and is just sitting independently and is an absolute joy. He's the happiest child I've ever met and just loves smiling at people. It is hard, its not what you had planned, it changes your life totally, but on the positive side, we know what's important in life, our perspective has changed, we've met amazing people. But don't be afraid to ask for help if you're struggling, I resisted anti-depressants for over a year and I wish I had had them earlier, it just bought me time to focus on the positives he brings rather than dwelling on the negatives.

Good luck.

Hi MM. Warning, this is a v long post!!
I haven't been on for ages but I think I replied to one of your threads a while back. We're also in inner London and use various hospitals inc Hammersmith and GOS. DD is nearly 15 months and also has GDD. She has hypotonia, is hyperflexible, has hearing loss, a squint, some vision problems, and her speech is very delayed (no babble at all). So we have input from approx 1-2 (sometimes 4) medical professionals a week!
We were 'in the system' from the time I had a scan at 22wks and ventriculomegaly (too much fluid on the brain) was diagnosed. Although her first few weeks were very stressful as she couldn't feed and had to go to special care, this was actually a positive thing as services like physio, OT and portage came about fairly rapidly. She is also likely to remain undiagnosed as all tests including micro-array testing (tests for micro-deletions across all the chromosones) have so fat proved negative. We've had a good experience with paediatricians; nobody's ever said anything negative, probably because they seem quite OK with admitting that they don't know what's wrong!
We seem to get treatments in blocks of 6 weeks although physio are very understaffed at present and we haven't seen anyone for ages. I found our physio amazingly helpful. She predicted at a time when DD was barely doing more than lying around putting her feet in her mouth, that she would crawl by her 1st b'day. And she did, 5 days before! Anyway I didn't intend to use your thread to bang on about myself but it seems I have. Please do get in touch if you want to talk more about living with GDD. Have found cranial osteopathy very helpful BTW. Went to Osteopathic Centre for Children and now see someone privately who can give her longer appts.

Hi Arabica,

that's really encouraging, well done to your DD for crawling! I think the bottom half of DS2 wants to crawl, pity about the top half....he still can bear hardly any weight on his arms when he is on his tummy, although he is reaching more and playing with toys more. I think if we could get to the bottom of his weak arms we would be a fair way to solving a few of his problems. Noone has really given us any idea as to a dx, although they do talk about spasticity and stiffness, so we think they are referring to cerebral palsy, but noone has specifically mentioned it.

He has a hearing test tomorrow, and then Monday and Tuesday of next week we are at BIBIC.

Hope your DD keeps on making those huge improvements...

He is having private physio, but I was told today by the OT that because the local physio has left, some other team will be picking him up. I am shocked there is only one PT. Pathetic!

We were thankful to see the OT today, but while it wasn't the talk-fest I thought it would be it really was just common sense stuff - playing with him, encouraging him to reach. She suggested we put him on his side to encourage reaching more.

The most depressing though was when we got talking about special seats for him - really medicalised ones for the bath and for him to sit in to play.

I am still getting used to the idea of my DS having a problem, and it was a bit much seeing these frankly ugly chairs....

She did say that she had noticed some improvements in DS, so that is encouraging..

Hello @mm22bys I know this is a very very old thread, but I’m hoping after this many years this will still teach you? I would love to know how your ds is doing now, he must be 13years or so if I’m correct? My dd is diagnosed with gdd at 15m and she isn’t crawling or walking And I’m going crazy searching the net, feel a mess not knowing what the future holds for her how will she be! It’s such a tough time ....
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