MSE Parents Club Part 12

searching_me

oooo you know jam its things like this that make me love this board even more .. right well off to get dressed and take the kids out for the day .. back later .. hope everyone has a great day and caz im sending go away rain clouds vibes xxxx

Tigsteroonie

Morning All :hello: Well, the cat is out of the bag now (re Mum), so I may as well tell you all what's been happening. It does mean that she's stalking me on BnB :eek:

On Wednesday (10 days ago) Andrew had the first of what we called "spasmodic episodes" - 2 mins long, repeated crunching of the legs for a second and then relaxing for 10 seconds, accompanied by harsh crying. As he hadn't poop'd for a while, our initial thoughts were colic/constipation. We called the HV, and went to see her on Thursday morning. We didn't really spot any pattern at this point, and the HV agreed it could be constipation, but to monitor the situation.

By Saturday morning, he'd poop'd and was still having the episodes every 4-5 hours. We went to the out-of-hours GP, who sent us to A&E. He had an episode whilst waiting there so we got it on camera and could show the doctors. They said that it looked more like Infantile Spasms (epilepsy for babies) rather than colic, and admitted him straight to the Paediatric ward.

He was observed for 48hrs until they could do an EEG on Monday morning, still having the spasms every 4 hrs, still 2-3 mins long. The EEG confirmed a particular abnormal brainwave pattern (hypsarrythmia) which confirmed the diagnosis of Infantile Spasms. He started hormonal steroid treatment on Tuesday morning, and was discharged on Friday afternoon, after spending 6 days in hospital.

You can imagine our stress levels during this time were pretty high! I was spending 21hrs a day at the hospital, coming home each evening after he'd gone to sleep for about 3hrs before returning to spend the night in his room (in case he had an episode overnight). The spasms were distressing to watch, and we were thankful that they were short and infrequent. Most worrying are the statistics that a high proportion of babies with IS also then have developmental problems.

The good news is that Andrew is responding to the initial dosage of the steroids, the episodes lessened and we are now 48hrs since the last one (Friday morning). He returns in 10 days for his next EEG, and we hope that it shows improvement. He'll remain on steroids for about three months. The side-effects of the meds are irritability (but he's been grumpy for a while, turns out this could have been the IS); drowsiness (when he's not grumpy, he's asleep); high blood pressure (being monitored by community nurses); and increased appetite - which is absolutely no problem for Andrew as there has always been an issue with getting him to eat/drink sufficiently for accelerated growth. Today he has been demonstrating his ability to roll over and over, so we're cautiously optimistic about it not affecting his development too much - we caught it really early on.

So, thank you for all your messages of support :A

JAM1376

Big hugs Tigs. If there is anything I can do locally, just let me know xxx

Tigsteroonie

Cheers :kisses3:

I'm sat here in floods of tears because Andrew just smiled at me - first time we've seen his smile for weeks. I'm a daft soppy apath.

My_Fathers_Daughter

Big hugs tigs, probably not helpful but I think seizures are quite common in kids and most grow out of them. Is that likely to be the case here?

Yay for smiles and rolling. Xx

aless02

:grouphug: Tigs :grouphug:

tiamai_d

Happy Birthday Caz and SM!!!

Tigs, glad to hear he seems to be getting them under control and that he is doing rolling and smiling, that must mean good things.

Tigsteroonie

My_Fathers_Daughter wrote: »

Big hugs tigs, probably not helpful but I think seizures are quite common in kids and most grow out of them. Is that likely to be the case here?

Whilst febrile convulsions are quite common, it seems Infantile Spasms (West Syndrome) only affect around 2500 babies a year, so each hospital is only like to see 1 or 2 cases per year. The symptoms are similar to colic, particularly in worse cases (Andrew was mild with only 2minute episodes and a bit old for colic), so it normally takes a while to be diagnosed - and that's where the development issues come into it, as all the time it is happening untreated, it's taking away some brainpower.

They do grow out of it around 18m-2y, but from what I understand, it means they are prone to developing other forms of epilepsy as they get older (especially in puberty). It's something we now know to look out for.

Becles

Big *hugs* Tigs and a kiss for Andrew. Hope the treatment continues to work and he settles soon. It must be so distressing to see something like that happening to your own child. Take care xx

All packed and ready to go now. Managed to get five people's stuff into three suitcases

Will be back late on the 7th June, so I'll see you all then! Take care everyone and *hugs* all round xx

My_Fathers_Daughter

Glad you caught it early on tigs and as you say you will know what to look for in the future. Any link to him being prem or just one of those things? (if that is too detailed / insensitive a question ignore me)

Happy Birthday caz and SM!


My ex has announced on fb that he got married this weekend, it would appear they 'ran away' to do it because his SIL (my fb friend) wasn't there and didn't know. Am happy that he has taken the leap but it feels weird because it was one of the things that split us up.


Benjamin was magnificently sick last night when I put him into bed. I was pottering upstairs, heard a funny gushing sound and when I went in he had puked all over his own face and hair and 3 of his fave teddies LOL.