1 year old with epilepsy, global developmental delay and no attachment?

[Takoda]

Hi. I have a 1 year old with epilepsy and global developmental delay. He is just learning to sit (when placed in position), he can roll from back to front, he finally has 80% head control. He can't babble, crawl or roll to back very often. He doesn't play with toys or use his hands productively. He can hold on to a rattle for a lottle bit and shake it back and forth but never reaches to touch anything (including us) or to grab. He can roll over but does not seem to realise he could use this skill to get somewhere or reach something or be closer to someone. He smiles all the time at everyone and laughs occasionally (but it is hard for the noise to come out). He seldom cries but can if he is put to bed and doesn't want to be left alone.

My main concern/question is about his attachment to me and his dad. He is just as smiley and happy with anyone/everyone else. Nan and poppy. His therapists or even a stranger. He doesn't seem to realize when we leave (definately not bothered) or does he particularly notice when we return (he may wave his arms an legs a little more excitedly when he sees me or his dad compared to someone he doesn't know but it is subtle).

Has anyone else experienced this? Is it part of the delay? I can't find any forums that mention this. Everything else he does seems to be within the huge norm of developmental delay and epilepsy.

Thank you. My lil boy is the light in my life. I would love him to love me or want to hug me one day

Additional info: He was diagnosed with epilepsy at 4 months. They have not been able to find a cause yet. He has had an MRI, blood tests, metabolic tests, chromosome test, skin biopsy and spinal fluid test (all normal). he is currently on keppra and clonazapam. He didn't have a seizure in 3 months but had 2 breakthrough seizures in the last 2 weeks (before the keppra he had 1-6 seizures per day). We have increases keppra this week.

 

[donnajane]

Welcome. I have a 16month old with undiagnosed siezures. He is also slightly delayed but at the moment seems to be catching up a bit. Last visit to the Paed he was around over 4months behind in some areas. more in other but in some he was almost normal. He learned to pull himself along the floor at 12months but now when he remembers how to he walks. In the last few months he has developed more attachement to both his dad and I. Before this it was mainly me but as you said it was a bit like he could be with anybody. We were told it was part of his delay one that few people look at. Everyone asks can he crawl, roll, walk etc not does he recognise his mum and dad.
We are still going through the whole lot of tests while they search for an answer. He has different types of seizures, his Nureologist has said he thinks they are Epileptic events, he has strange metabolic issues - Rashes, face sweilling which comes and goes, strange BA's, he can almost appear to have no emotion what so ever sometimes and this can last for well over an hour. He has had EEG's 4 normal, the 5th showed a slowing on the back right of his brain, his nureo said that may explain some of the issues he has at times with getting his left side to work. We are off to see the Metabolic specialist in 3 weeks then an MRI on 13th July.
So far the Nureo hasn't put him on any meds although he has given me a script which I am to fill if he thinks it is needed. His Nureo has asked us to email him weekly updates and has been great that if things go wrong he is pretty easy to get hold of.
His Paed is great as she says remember the term Development Delay does mean that he has a chance of "catching" up. I am so proud of what my little guy does as for awhile he was having days where he would have 150 mini seizures last no more than a couple of seconds so no wonder his development is behind. Thankfully we see very few of these large number of mini seizures but he now has other longer and more concerning ones.
His smile is the best thing. I always say to people I can handle him being a bit different, having seizures etc but what I think I would struggle with and find heartbreaking is if one day he doesn't come back from on of his periods of no emotion as it would almost be like I have lost my little man
Hope your lil boy starts smothering you with cuddles soon.
Take Care.
Donnajame

 

[Takoda]

Hi. Thank you so much for your reply Donna. It does help reading about other mums and bubs in similiar situations. Good luck with his MRI in July. 18 months is when Takoda's is due too. Even I can sometimes forget about the important emotional delays. I get so excited when he started to roll and now that he can sit for a few seconds (although has no idea how to get into the position). Then I meet another 1 year old (1 1/2 year old) and am astounded by their receptive language skills and understanding. Takoda can't even copy poking out his tongue and he has never touched us purposefully it is a long road and I will just have to be happy annoying him with too many kisses until he learns to push me away lol

 

[Nakamova]

Hi takoda, I just wanted to add my welcome to donna's. I don't have personal wisdom to add, but I wanted to wish you the best for you and son. What you describe sounds like Disinhibited Reactive Attachment Disorder:

Children with Reactive Attachment Disorder of the Disinhibited type respond to caregivers, but fail to discriminate them as special people and show a similar level of responsiveness to strangers.

There's more info here: http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=14510&cn=37
These kinds of disorders often come out of a stressful home environment -- which is clearly not the case for you and your son -- but it might be a useful starting point for a discussion with his docs.

 

[donnajane]

In seeking a diagnosis for whats happening with my little man we have met some amazing other babies who have given me so much hope. Recently we met a 20month old girl who could not roll or even sit at 1 she had to be proped up on pillows yet when we met her at 20months old she was running around the room her mum was so inspirational. I also met a friend in my sons mums group who's older boy has had the back section of one of his brain lobes removed due to seizures which they found were caused by tumours. He's now 4 and you would never know he had anything happen to him other than he has a slight lisp when he speaks. I take faith in all these stories that my son and yours and children like them to will have the same wonderful outcome. But even if my son doesn't I will still cherish him as will his dad and big brother and sister.