Please please could someone help

[Debbie G]

Hello again. I posted a couple of months ago bt we are still no further forward. Two weeks ago today our son Jack had his first definite seizures that lasted for almost 5 hours. We have had our concerns about different twitches and absences for a good while now but an eeg done when Jack was 8 months old said everything was normal.
The recent 1 he was hving absences for about 4 minutes each then coming round for a couple of seconds and jerking with his eyes fixed to the left and his mouth up at the left side like a strange Elvis impression. The A and E doctor said it was definitely epileptic seizure and gave him Midazalam which brought him out of it and sent him to sleep.

He has not been himself since and has been very stiff usually very low tone, cranky, pale and fed up really. We had another eeg yesterday for about 45 mins 10 of which he was asleep. He did not have a seizure during it and the result again is normal. We are very confused now can someone please help as we are scared to death

Many thanks
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[Kerryn]

Ohhhh sweetie,

I can only imagine how helpless and scared you feel right now!

I have no answer for you, but I want you to know that you are not alone right now. There are lots of us here, and please contact me, or someone else if you want to talk - day or night

It sucks right now, but I can promise it does get better - even though it feels like it won't.

My thoughts are with you and your family xx

Kerryn
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Kerryn -
Mum to Brianna, 11/12/04 Olivia, 22/02/08 (ICM)

[lorrie]

hi i can understand of how you must be feeling ,it is scary when your child is having seizures
i know when isaac has seizures or is unwell and has seizures it is scary he had a drop seizure 2 days ago where he hit his head on the floor it was just before he was due to go to the doctors to get checked out as he had'nt been himself lately and i was getting him checked out to find out what was wrong
i have found with isaac who has all the differant types of seizures depending on what kind of seizure isaac has had also depends on how isaac is afterwards as sometimes he just goes to sleep and sometimes it has afected him for about a week where not only is he constantly tired but also lethalgic it almost seems like isaac has gone backwards in mobility etc but then he returns back to his usual self
i have found that knowing and watching isaac i can usually tell when something is brewing as what seems to be a fluid jerky specially in his hands becomes more of a stiff jerkyness so when isaac goes like that i tend to watch him like a hawk as most times he ends up having a seizure of some sort
where your sons eyes tend to go to the left isaacs tend to go to the right but has that same curl of the mouth if you can call it that
you may find that he is a bit cranky because of the new medication he is on give it time
isaac was not himself for a few weeks when he first started taking meds but is fine now and for the last yr and half has only had small seizures eg absent,drop and not very often isaac has'nt had any big seizures for almost a yr and a half now
hopefully this has been of some help to you

[Debbie G]

Hi thanks so much for your replies. Jack has not been put on any meds tht is one of the reasons we are so worried. In A & E the doctor said once we had been admitted to the neuro ward they would sort out which meds he would be put on. However the neurologist who saw him 24 hours later when he had stopped having seizures wanted to wait and see what happened . We agreed but after the last 2 weeks of Jack been very unwell and still having the seizures we thought medication would now have been started. The hospital saw him again last week and we saw a different neurologist who said again we will wait and see. I just feel we have waited long enugh and Jack is clearly not right. His longest seizures were witnessed by medical staff but because the eeg is clear I feel we are back to square one.!!
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[diii123]

Hi

What a terrible time for you. And it's not fair that you should have to obviously struggle so much with the neurologists. I would ask for a third fourth and fith opionion until you are happy. I would of thought the EEG would pick up something even if he's not having a seizure at the time. Maybe sugest a 24hr EEG, or even just a longer one. Sometimes you have to really push the medicals (something I find really hard to do), but you know your child better than they do, and if your gut tells you something is up, then 9 times out of 10, something is up.
If they won't do the longer EEG, then suggest putting him on a low dose med.
Explain what is happening in detail to your son until they get it. It took me 3 goes of explaining what was happening to Beau before they got it. (I don't think I was explaining stuff very well ).
And if they won't listen, find someone who will. If you've got a good GP or Paediatrician who listens to your concerns, get them to go in to bat for you.
I don't know if any of this is helping.

I feel for you. It's so dam hard when your having to deal with something like this and you feel like the medical proffesion are working against you. I used to sit back and let the doctors tell me what was what, and trust them. Now I trust myself first, and I tell them what is what (most of the time) until I think my point is made.

All the best, and let us all know how you go.
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Diana
Mother of Lara 5yrs and Beau 3yrs (finally diagnosed) UBE3A mutation

[sallyshackcloth]

Hi Debbie, I agree very much with what the others posts say about trusting your instincts and asking for another EEG or a 24 hr one. Have you thought about recording his behaviour, what he's doing closely in a daily record as well as filming him somehow. The doctor may then understand better what's going on.
My paediatrician said to me once that he listens very closely to the mother as she is the 'expert' on her child and it is true. It might also help if you can take someone with you to help eg mind Jack while you explain or help you ask the questions and listen to the answers. It is such a difficult and emotional time for you that sometimes you can forget things! Best wishes, Sally.

[Magster's Mom]

Hi Debbie,

I agree with the others to trust your gut and keep pushing for more monitoring.

However, what you describe the last two weeks since that big seizure does not sound like seizure activity. Could your son be sick? The way you describe him, the stiffness could be the result of something like pain from reflux. I would take him to your paediatrician and get a full work up. It could be that the long seizure was a symptom of an illness. They may have treated the seizure but not the illness that caused it.

I totally understand your worry and concern. Maggie has had seizures since infancy and its so stressful! But try to reassure yourself that absence seizures rarely cause any long-term damage. There is nothing here in what you describe that sounds like a medical emergency to me. Absence seizures are some of the least likely to ever be treated because they can be so subtle. I think you have time to sort this out.

The most common triggers of seizures are fever, illness, sleep deprivation, overstimulation and exhaustion. I'd try to remove those triggers if any of them could be bothering your son and try to give it some time. I'd try to be seen a paediatrician who can rule out any medical issues such as pain from reflux. I wouldn't understimate the pain and discomfort of things like teething for our wee ones, since our kids often over-sensitive gums. Teething alone has been something that caused seizures in Maggie. I'd get his throat and eyes and ears all carefully examined, then I'd watch and see.

If this is all epileptic, chances are it will flare up again. In many ways, it is wise for the doctors to avoid rushing to put him on medication. Medications for epilepsy are often powerful drugs that can cause the worst side effects in the youngest children. Next to being under-treated for epilepsy, the worst thing is to be over-treated for epilepsy. There is good medical reasons to avoid treatment with a daily seizure med until there is evidence of the epilepsy on EEG or until there has been more than one serious outbreak of seizures. I find that doctors in the UK seem to be conservative in seizure treatment than doctors in the US, with Canadian doctors somewhere in the middle. There are good medical reasons to decide to wait, just as there are good reasons to go ahead and treat. It is a judgement call, but it is probably not any kind of emergency. If this is epileptic, then chances are, you'll see proof of that soon and then it will be impossible for the doctors to not treat it. In the meantime, it sounds like you are facing doctors who are being more conservative than you'd like, but who truly do have your son's best interests in minds and are trying to spare him the possible negative effects of medication if at all possible.

Hang in there! For us, the most stressful time coping with Maggie's epilepsy was when she was little. The older she has gotten, the more experience with have with her epilepsy and the easier its been to know what is seizures and what is not. I think time is on your side here.
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Erin Sheldon, mom to Maggie, del+, DOB 8/14/03 and Ella DOB 8/19/06. www.sheldonhickey.com

See Maggie star in her movies on YouTube: http://ca.youtube.com/user/magstsersmum

[alison2]

I think that you need to go back to your neurologist and tell them that you are not happy to wait and see any longer. Could you perhaps take some video of your little one having the seizure activity to show them exactly what is happening and keep a 24 hour long diary of how often the episodes are occurring and lasting so that they are faced with evidence that surely they must act upon.
There is nothing worse than knowing that something is wrong but being made to feel like neurotic parents, but realistically the doctors should be treating these seizures by now, shouldn't they.
Good luck with this. Just keep going til someone takes notice of you.