OT for 1 year old with complex epilepsy/infantile spasms

[Tinymrscollings]

Hi, we're a bit new to all this but learning fast. I wonder if anyone can offer us any advice? After 3 long months of worry and significant developmental regression our son was diagnosed with epileptic infantile spasms in November . He's just turned one and his seizures are thankfully being controlled. whilst the cause is still unclear he's doing so, so well and has learned to smile, laugh, sit and interact again. He lost all of these skills during the time his seizures were uncontrolled. The message I've received loud and clear is that PT, OT and ST are things he needs as young as possible and that he needs as much as we can get for him in order that he can learn to crawl, walk etc. Our local PCT have assessed him (they don't know much about his condition) and have said he qualifies for one block of OT that they want to wait before they start it. Everything I've read and been told contradicts this. I let them convince me against my instinct that he was OK and leave us for 3 months last year and untold damage has been done. I think it's happening again with this but I just can't leave it this time. I feel so guilty for letting it lie for all that time whilst he worsened by the day and for the damage that's been done. I want the very best chance for him to live the very best life he can. Should I ask them to rethink? will they do that? Or should I think about taking him private for OT etc? we could find a way to pay for it (bang goes the post-traumatic family holiday ) but I wonder if anyone has any experience of private OT or for developmental delay? Oof. Long. thanks!

We have DD 3.5 who has had epilepsy from 4 months. We initially received great OT and PT when she was 17 months because she has GDD and hypermobility but now we are lucky if they can be bothered!
We receive ST every month and she is brilliant.

DD's epilepsy is not controlled so firstly you and your son and are in a not so bad position as this should help with his development. Having seizures incurs a lot of down time and being controlled will hopefully mean that he will start to gain the skills he lost.

Our DD lost loads of skills in first year of seizures but is making progress albeit very slowly so time does help. Our problem is she is still having daily seizures so we still lose skills and have to build on them.

Not sure about private OT as we could not afford this but well worth looking into.

Don't beat yourself up, life is hard and having a professional tell you something and you relying on it does not mean that you are wrong.

You get used to the talk and you certainty get used to being your child's advocate. There are days when I get bored of listening to myself but you have to do what you think it right for your child as he cannot speak for himself.

Good luck if you do decide private OT for you x

Tiny, I think I would be urging for the 'block' of therapy to be started asap and ask for clear goals for the treatment also.
Ideally a baby with complex needs (guessing) would be seen jointly by OT, PT and SaLT as there is a lot of overlap between skills e.g. self-feeding might be jointly between OT and SaLT, mobility might be between OT and PT, play skills everyone and so on.
I would be looking for a comprehensive assessment of his current skills to act as a baseline from which to work. Although there are not a lot of standardised assessments for that age group, nonetheless there should be a clear picture taken of his sensory processing, current gross and fine motor skills, independence skills, personal care skills etc.

In your shoes, TBH, I would push for the PCT block before going privately as, if you have not been to OT before, going to his sessions will train you to the lingo and what to expect. It might also lead the PCT to re-assess what his needs are once he has been seen 'in-house'.

They will prob push back at your request to start now, but if you can at all, get things moving. And once your block is finished, ask for a comprehensive home programme on which to work 'while waiting for his next block'.

thanks, both. I really appreciate your help. can you tell me what SALT is? I'm learning a new acronym every day atm . I'll take your advice and ask them again for the OT. We have just been sent an appt from the child paediatric team to see a doctor to discuss his therapeutic needs so perhaps all.is not lost...

sovery, I commented on your other thread about vigabatrin. is it for your DD? That's the drug that's controlling DS's epilepsy and it's been an absolute godsend for us. I can give you loads of coal face info if you need it .

SaLT = Speech and Language Therapy

Good luck with the Paediatrician.

ah, got it. thanks Porridge!

Tiny, thanks so much, forgot to look at thread ! but thanks :)
Drug is for DD.

Please give me any and all info you got. GOSH (Great Ormond Street) are saying that we may need to take a pragmatic look at DD medicine and potential long term learning difficulties but it feels like we are gearing up to another long convo with them.

We were told it would be a permanent disability if DD did lose sight so you know fully (as u made decision) how hard it is.

Our saving grace is she on combo of drugs but newest addition is Zonisimide, this is helping but who knows for how long!

As I said any help would be wonderful! :)

Hi, my DD received OT PT and SALT for the PCT from when my DD came home from hospital at 5.5 months. I found the blocks - a weekly visit overwhelming, so after a few weeks asked them to space them more evenly, every 2-3 wks, allowing us a chance to work on what had been practiced in the session. We had joint sessions as mentioned by porridgelover and these were useful too. By spacing the sessions out we never have huge gaps with no input- these fortnightly sessions continue now for my DD at 2.

We also had Portage, play development, provided by our PCT. Do they have this in your area? If so I would urge you to get these sessions started too, as we found these very useful and fun.

Good luck and push hard !

Thanks Toots, that's really good to know. I don't know what we need but I don't want to leave anything to chance any more. back to them for another conversation I think...

Sovery, DS has a form of epilepsy that responds to a very limited range of drugs so we didn't have much to choose from. We're still pretty new to this so I trust our consultant (also GOS), who made him so much better after such a dreadful time, unquestioningly. I sometimes think I love her a bit .

She explained that the peripheral sight loss was a risk but that it's generally seen after prolonged use and is incremental - they test for it regularly and if they start to see it they'll reassess their use of the medication. Testing peripheral vision in our 1yo is more difficult but I would think in your DD it'd be easier if she is able to communicate effctively with the technician. She says it's irreversible damage but they aren't going to be 'blind', and they can generally catch the vision loss as it starts and reassess the meds before too much damage is done.

I was anxious about it but DH answered my concerns when he said to the doctor 'so basically what you're saying is if we don't get this under control, not being able to drive or be in the army will be the very least of his worries as an adult?' She said yes. We took the meds. Maybe that's what they mean about being pragmatic. It's so hard though.

Day to day the side effects are minimal. he got a bit of thrush but that was it. Do let me know what you decide and how you get on. I so admire you all, we are exhausted and we've only been at this 6 months!

Hi Tiny

It seems that we are getting contradicting info from our Consultant. He introduced medicine by saying 1 of 2 alternatives and immediately said BUT there is the risk of vision loss. This can happen straight away and is permanent. DH did some research and sad to say that in USA over 30 % of those on this drug suffered with this side effect.

We were also told by same consultant that they could not tell us that DD would have suffered vision loss as they cannot test until 8/9 yrs old. With lack of verbal skills we would most likely have to wait this long before DD could tell us anyway.

Not saying that if DD was to use it it would happen but its such a risk.

Our DD has a complex refractory epilepsy that is getting harder to treat and this is why Vigabitron has been suggested (we are down to last 3 drugs now- tried everything else!)

I can totally appreciate that in your DS case this is one of the only drugs that works for his epilepsy. I guess the problem with being pragmatic is now DD has been diagnosed with Microcephaly (small head) the epilepsy may be secondary to other conditions. They need to do further testing and that is our problem. If we knew what her poss learning difficulties were going to be we would be able to make a more pragmatic choice.

Sorry for long thread return!!!! :)