Global Development Delay & epilepsy

[Worriedmamaofboy]

Hi, first time poster here, so thanks for clicking on this thread.

My son is 20 months (19 adjusted if that still matters) and has global development delay. I guess I’m just looking to connect with others who have been on this rather lonely and worrisome road and see how it panned out for you.

My son is a a happy lad, but only army crawls - no 4 point crawl no walking, can’t pull to stand himself (but does will a little support), can’t stand independently. Only says mama & dada. Limited understanding.

He has epilepsy, not a day has gone by this year without a seizure. At its worst he was having between 70-100 a day but meds have brought this down to less that 10 day.

Development paediatrician believe the seizures have caused the delay, MRI and genetic tests are clear. Paediatrician has placed him at a functioning age of between 10-12 months.

Anyone been in a similar boat? Non mobile or communication 20 month old that achieved these milestones and everything worked out hunky dory?

Thanks in advance to anyone who shares their story. I’m really struggling with my own mental health due to constantly worrying about what the future holds x

That sounds really hard op. He sounds like a lovely little boy.

DS also has epilepsy and it's a tough one. I'm glad your little ones meds are making such a difference! DS was initially given a global development delay diagnosis at 18 months but that changed as he got older. We know the communication struggle but there's lots of help available. He has significant communication issues. It's hard at times but certainly hasn't been the end of the world.

Have you tried connecting with other parents locally in a similar situation? Local epilepsy charity/group? Contacted your local carers centre? They can also point you in the direction of extra support if you feel you need it. I spent a lot of time worrying about the future when my ds was little. Far to much time and forgot to enjoy him being little, I really regret that now. Counselling really helped me to come to terms with things and I still have a couple of sessions a year just to talk things through. He's nearly a teen now, I still think about the future a lot but it helps to talk things through so the worry doesn't take over.

Hi, I could have written your post pretty much exactly. My son is now 2.3, he has global development delay and epilepsy, again they are fairly sure that seizure activity has caused the delays. His seizures were extremely hard to spot, almost like when you fall asleep too quickly little jerks, it was constant all day. He started medication at 16months and it has reduced them significantly.

He did not walk until 20months and even still is unsteady on his feet but he gets there, he can climb and use all the equipment at the park, use ride on toys, I honestly didnt think I would see the day. I see little improvements in him every day but i know only too well how heartbreakingly impossible it is not to compare and to think the worst.

I went through an extremely bad stage worrying and still get bouts of it now ending in tears of what could have been but what helps me is watching videos of him a lot younger and appreciate the progress he has made .

Unfortunately we still have no significant speech and communication is difficult. His understanding is coming on leaps and bounds though. What has really helped more than anything is nursery, he clearly watches everything and takes it all in, practices and masters it his own way.

Please please enjoy you child and celebrate every little achievement as he is developing every day...just at his own pace and that is totally ok!

Thank you so much for sharing.

My son has drop (atonic) seizures, but they started out very mild head nods, then got worse to full body collapses and now back to head nods. Is that what your son has, or are they myoclonic jerks? I noticed them when he was around 9 months and could 100% confidently hold his head and sit up but kept falling over, that’s when I knew something was up but they could have been happening before then but we didn’t notice and just thought it was poor head control.

Progress is being made, albeit so slow but there is an unbelievable comfort in reading that someone else is on a similar path and at least fully mobility has been mastered!!

Have you got SALT support? We are waiting for a referral. I’m so concerned he doesn’t point or wave or communicate with gestures, I don’t even know if they can help if he isn’t doing those things.

Yes we were so lucky that the peadiatrician who seen him regarding his seizure activity is also a child development specialist with their own clinic so she was able to get the ball rolling very early (14months) in having him attend development clinics where there is an OT, physio and slt present. He then attends all of these separately (although with covid only 2 slt sessions so far)

Honestly I pinned all my hopes on slt but they were very honest in saying you cannot make a child develop sooner than they are ready and as he is operating at a much younger age then his communication skills are in line with his development age if that makes sense? It was hard to hear but in a way also helpful because I was so sick of hearing ' he will catch up, boys speak later' etc. Now I know that he more than likely wont catch up with his peers but be operating at the level of his own development and that's helped a lot with my expectations and how I interact with him.

20months was our turning point and I dont say that to give false hope, each child is different but he had been on medication a few months and suddenly we got clapping, waving and whole hand pointing very close together, we still arent pointing with index finger but he gets our attention and shares his which is the main thing. He has progressed to copying some nursery rhyme actions, enough for me to understand which songs he would like.

Salt focused a lot on common sense type activity, repeating words until you are sick hearing yourself talk. Playing ' ready steady......go' games to gain their eye contact and improve concentration skills. All things we probably naturally do.

Yes his seizures are mainly myoclonic jerks, he has had a few drop attacks but I will forever feel guilty that he was probably having many more seizures than we knew.

I totally understand the deep dark hole, I had to consult the GP at one stage for medication for myself but it didnt agree with me and am fortunate to be in a much better head space now but I can completely relate.

Dont worry about his communication level re salt, they may just be looking for how engaged he is to speech toys, eye contact etc. It is a very relaxed play based setting so please dont be anxious

@Dugi3 I feel I could just ask you a million questions, I’ve woken today feeling so much lighter after just reading your story - so thank you.

I know all kids are different and our journey won’t necessarily be the same as yours, but at least I know someone is similar.

My son has great joint attention and eye contact, he babbles and is starting to do this conversationally.

He loves to clap! Not always when asked but mostly appropriately (to music etc,) he gives high fives when asked and sometimes kisses (just to me and only once lol.) I just want that pointing to start! He also hasn’t mastered his pincer grip though.

Do you have any words? We only have mama and dada, which were learnt at 15 months - nothing since, however we did have 3 awful months on a bad med after that.

Toy wise, balls are a firm favourite and he will roll and army crawl round the house chasing a ball, or fidget spinners or cars… that’s about it. No putting stuff in and out of things.

I toyed with contacting the doctor, but really want to try find the strength within myself to regulate my emotions. I need to for him. If I can’t be strong and positive for him, how can he face this world?? It’s just so hard to accept that my baby boy has a learning disability.

Has your neuro given any indication of prognosis? Likelihood of growing out of it? Development of other seizure types etc? X

I am so glad that sharing has helped a little, I felt I had noone who understood, especially because he is our first born my whole world just fell apart for a while.

Honestly from your last post I can only see positive things! It's amazing that he has great joint attention and you had mentioned earlier that you were worried about his communication with gestures...clapping, blowing kisses etc is exactly communicating with gestures, the early stages of it but one of the very first questions development paeds asked me so that's fantastic, my son wouldn't have been able to do this closer until closer to 19 maybe 20months.

Frustratingly but also reassuringly, my sons MRI/EEGs have all been completely clear, its baffling but they explained is quite common, a child can have epilepsy even if epileptic activity isnt registered on EEG. I almost wish something had showed to absolutely confirm to me what is wrong and to reassure me that medication was the right decision for him but at the moment I live by trusting the doctors.

The neurologist is hopeful that he may have childhood epilepsy as he displays several different kinds of seizure which is symptomatic of childhood epilepsy apparently (I hope I am getting this accurate, we have seen so many people). If he is seizure free for 2 years they will trial medication reduction but at this point I dont see this any time soon.

I hope I have answered anything but do keep asking anything and everything or share your worries/excitement/proud moments, it's so lovely to have someone who understands!

Also sorry meant to add that we have 'words' that we understand the meaning to but others wouldnt, they certainly arent clear words, mainly animal noises and goodness knows what animals live around here as his noises for them are very strange 😂 but they are always the same noise so they have meaning to him, if you ask what the cat does he does a high pitch 'ooooowwwww' every time, its adorable.

He can say around 10 'words' which have meaning to him but knows a lot lot more if we ask him to point to certain images in books he knows them all but the speech is yet to catch up. He only spoke after his 2nd birthday so your boy is doing so well!

Balls are a firm favourite here too and anything to do with Twirlywoos or Duggee! I tend to avoid the flashing lights noise toys are he becomes way too engrossed and obsessive with them.

Hi there

my 7 month old has just been diagnosed and I am wondering how things are going for you both? We’re having a bad day, seizures are increasing.
He’s on 2 AEDs and started keto diet a few weeks ago.
He developed normally until 5 months then the seizures started and we now get very little from him. He’s stopped smiling but sometimes gives eye contact. He interacts with some toys briefly.
I keep reading people say how happy their child still is but the fact he’s stopped smiling has made me frightened that he will be blank forever.
I am so frightened for our future today and don’t know who to turn to.