Advice on lennox-gastaut-syndrome??

[caitlinnjacksmummy]

Don't know much about it...but me and NMC were discussing it thru msn last night...and she sed she thinks a lotta it sounds like my DS1 ....which scared me stupid, but I googled it and a lot of it DOESN'T sound like it, and SURE my paed would NOT keep this from me?

[caitlinnjacksmummy]

Anyone have experience of this syndrome??

[fatzak]

No experience cjm but like you have often googled it and also scares me stupid. DS has epilepsy and I can frighten myself to death worrying about exactly what he has. Everytime he forgets a word(he's 5 btw) or struggles to get his words out, I panic that he is losing his language and that it must be LG. We have a 3 day video telemetry in the pipe line which might help to determine what is exactly going on.

[feelingbitfestive]

Don't google it! 'Tis my only advice. I did - scared me witless, but I think the info is so generalised (and out of date) that it can scare you for the wrong reasons.
Ask for another EEG - as DSS said above, I'm sure I read (after googling ) that it is the pattern on the EEG that is the diagnosis. And ask, (if you are like me) I would want to be told.
Fingers crossed for you and Jack xx

[caitlinnjacksmummy]

So paeds can keep this from u?? Now I am scared witless

[MadLyCarrolingChristmasMouse]

I would not think that they could keep it from you CJM, in fact they are in deep trouble if they are found out to have done so.

They do not have to use the name, but they must tell you the symptoms, effects, consequences, prognosis.

NMC is very knowledgeable, which I am sure is why you are now so worried, but even she cannot look into Jack's head.

If I remember correctly from earlier threads your doctors are not very helpful (at least not with meds am I right?)but depending on when you last saw someone you might want to request an appointment to put your mind at rest (hopefully)

[caitlinnjacksmummy]

Hi, I am very sad , and very scared, bn crying , I even went to call him(the paed) this morning....Wat I have bn told is tht prob won't get cntrol of seizures, it is a very hard to control epilepsy, because of where it is in his brain (he has damage to left and right temporal lobes)and he is susceptible to any type of seizure, and will not lead an independent life but to what extent he doesn't know, he will have learning difficulties, and may not be able to go to mainstream school, he has a genetic disorder, chromosome 6 attached itelf to chromosome 12 during conception and when ths happened chromosome 6 lost some of its equalities resulting in Jack's problems, he also has hypotonia (low muscle tone) and learned to sit unaided just 2 mnths ago (he is 21 mnths)and may not walk for a long time.

[feelingbitfestive]

That is the trouble though, isn't it? They tend to dance round the subject. DSs (pretty communicative for a neuro) neuro even avoids saying IS and Hyppsarrhythmia (sp?) and tends to talk 'abnormal pattern' etc. They are (IME - but then that's perhaps just DS!) very reluctant to give any info as to outcomes and prognosis, with the 'everyone's different, we need to wait and see' line. Unless you are informed and know how to ask the questions, they do tend to not want to give the info up (IME anyway). Then you I end up googling (or asking NMC ) to try and find out more which, in terms of google, is completely the wrong thing to do. But we need the info from somewhere???? It's so hard knowing what to accept as part of a condition and when to make a fuss if something changes - especially if those changes are subtle and/or are accompanied by illness/growth spurt etc. I tend to just make a fuss constantly .
Do try to get another appointment and EEG.

[feelingbitfestive]

X-posted there (slow typing)
I am sorry xx
It is so hard, but I am the type who needs to know. It kills me to hear (generally bad) news, but I am better knowing what I may have to deal with. Don't forget, these kiddies never cease to amaze us and Dr.s do not have a crystal ball. Nobody can definitely say what Jack will do in the future, they can only give you an idea.
It is devastating hearing news like that - even if you already have suspicions - hearing it is still a shock.
Have a bloody good cry, take a deep breath (cry some more, many times) and know that whatever the future has in store, you will do your best to ensure Jack has the best time possible - as you have done so far.
lots of good wishes, good luck and hugs xxx

[caitlinnjacksmummy]

Exactly "feelingbitfestive", they TOTALLY dance around the subject, ALL the time!!

Can't give u a straight answer, but we NEED to know as well, no matter hw upsetting, thy are OUR kids, we have a RIGHT to know...I agree, googling it is SOOO the wrong thing to do, but you are right. We need the answers from somewhere!! I myself have had the line "Every1 is different, we just have to wait and see"

Jack is doing well however apart from seizures...he is babbling, recognises ppl etc, just can't walk, but does get dwn off couch etc himself but gotta grab him as his legs can't support him , but wen we had the horrible results of the mri scan, and were told about the damage to brain, I wnt out the room crying, devastated, my dad stayed behind and sed to paed(I hadn't even noticd he had stayed behind), my dad sed to him "She(meaning myself) could have taken anything u threw at her today about Jack but not if Jack wasnt here" And my dad sed the paed's words were "Oh no no it wont come to that"...also bn told he will come on, jut lot slower

[caitlinnjacksmummy]

Little update......my heart is still racing, spoke to paed this mrning....

I could not leave it any longer...was tying myself in knots, afraid Jack had LGS, I could've cried with relief whn I heard paed's voice.....I asked him to be honest, that I'd bn speaking to someone (NMC) who thought Jack had it....he asked me who person was, think he was quite angry, sed Jack doesn't have this, his eeg last dec didn't show any signs of LGS but did say tht it can develop in some children later on and if it showed on Eeg he would tell me instantly, and would never keep it from me, also I askd wat outcome is if Jack DID develop it, he sed some kids do well, others not so well, but atm no signs of it, but sed he will do an eeg in few mnths maybe, only tend to do them if things got lot worse seizure wise and if they changed

Feel a lot better...I appreciate people's opinions and tht they try to help but I am quite sure I woulda bn told if he had had this...and wish I'd trusted my paed in first place...but also thankful to NMC as I knw for sure (for now anyway) tht he doesn't have this(and hopefully, pray to god he NEVER does)

[needmorecoffee]

I didnt want to scare you, just to ask the doc to consider it. sorry

[needmorecoffee]

after my experience having to badger doc about the seizures getting worse and asling about it and taking 6 months to get EEG. Then we get results 6 weeks later and it did show what we feared then doc went nuts that the results were 6 weeks old. You have to ask directly and name your fears.
But I'll shut up

[needmorecoffee]

and they had been telling us it wasn't possible cos she'd been seizure free for so long after we cured the infantile spasm.

[feelingbitfestive]

But NMC - it was your info that made her ask the question in the first place and now, thankfully, her mind has been put at rest by getting some proper answers to direct questions.
Don't shut up
(I like typing fwink - its my new fave word)

[BriocheDoree]

CJMummy and feelingbitfestive, sorry to hear you are both having a tough time with your respective DCs. Not trying to muscle in on a thread where I have no right to be but wanted to send {{{{{hugs}}}}}} as it all sounds a bit difficult . CJM, hope your mind has been set at rest a bit by paed.

[caitlinnjacksmummy]

Thanku every1, soo much, my mind has bn put at rest, just hope Jack NEVER develops it

[MadLyCarrolingChristmasMouse]

NMC it is hard to decide whether or not to mention something. there is someone I know whose baby (same age as my Nathan) is showing some signs of delay, possibly cp. I am still wondering whether to say something or not.

But what you say can make all the difference and as I said in my post before you are very knowledgeable

[mummyto2miracles]

Hey, name change guys, prev caitlinnjacksmummy