Son just started Lamictal on the 11/21/10 and....

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My Boy is home!

Thanks Endless,

We raised this with our paediatrician, but he doesn't beleive there is a link between Lamicatal and his infection.

We will stay the course with Lamictal for the time being, and hope there are no more problems.

While he was at hospital, he took a big step forward. Literally. He learnt the art of balancing, and started ripping around the ward behind a walker. It was a thrill for us to watch this development. It wont be long before he is walking around, making a lie of the phrase: "you have to learn to crawl before you can walk".

Merry Christmas everyone.
 
Awe, congratulations on the milestone :) That's such a great time in a child's life. Now he really gets to keep you on your toes!

I had Hunter in urgent care over the weekend with ear and sinus infection, I brought it up to the doc that I wasn't waiting until office hours because it says in Keppra's info sheet that it can cause a slightly higher risk of infections (and it was bad enough but I was worried about pneumonia too with the coughing)....and he told me that there wasn't a link either.
I know it's a totally different med than Luke is taking, but I do wonder why they say that when it's clearly in study results printed by the manufacturers of both of these meds.

It's not that the infection is caused directly by the medication, just that it seems to somehow dampen the strength of the immune system in patients who take it-i.e. they are more prone to infection. I don't have the slightest idea on the hows and whys, just that statisically more infections happen in those who take them than in those who don't.

I'm glad y'all were able to get him home in time for the holidays. Merry christmas to you too :)
 
Thanks dragonlady1978

Luke is on Keppra as well. In fact he is full throttle on the Keppra, and has only just started the Lamictal on a low dosage.

I think the problem is, the doctors have no more idea than we do about these drugs they are prescribing (perhaps less, as they do not directly see the side effects), but feel they have to give an authoritive answer. I wish they could understand, that we understand they don't have all the answers.

I think doctors can be a little hung up on the need to have all the answers, and to be able to give a confident opinion about a problem. Sometimes it does more harm than good.

If they can be more collaborative with the patient and parents of the patient (if they are littlies), I think the journey could be a lot smoother.

Regards,

Sean
 
Lamictal can cause leukopenia (low white blood cell count) which increases the risk forinfection. Luke's been on a fairly low dose, right? So probably not a factor in his pneumonia. But worth keeping an eye on in the future.

Anyway, congrats on Luke's continued progress in every way. Hope you and yours have terrific holidays!
 
Upcoming appointment - Advice needed

Happy new year all. I hope you all had a great time with friends and family.

I have an appointment on Feb. 2 with our Paed. Neuro., and we are keen to get as much out of it as we can. So, I have put together an agenda for the consultation, which will force a few issues to be thought about by the doctors, and ourselves prior to the meeting. The topics I have are:

1) Report on Luke's developmental status (by us).
2) Test Results status (by DR)- Genetics, EEGs, MRI.
3) Diagnosis (currently idiopathic). Drs to advise whether syndomes have been ruled out.
4) Teatment details - Current medications / Previous AEDs / Non-AED alternatives
5) Treatment results (by us) - seizure report / seizure triggers / treatment side affects

IN PREPARING THIS AGENDA, I REALISED THERE IS ONE ISSUE WE ARE UNSURE ABOUT. IT IS THE ONE TYPE OF SEIZURE LUKE HAS WHERE HE HAS LITTLE 'HEAD NODS' OR HEAD DROPS. The drs concluded they were atonic, but could they be classified as myoclonic?

He was only having 'head nods' at the time of his last EEG. Since then his seizures have also developed into full blown, collapse to the floor, atonic seizures as well. Perhaps the EEG test results are now out of date? Your thoughts would be appreciated. Could the atonic seizures, and 'head nods' be the same type of seizure, just of a different magnitude?

Thanks in advance,

Sean
 
Well, that

would really depend, I suppose. Is it just his head that drops, and nothing else moves?

Please, I don't want you or anyone else here to take offence, I am putting in a link to a video of a 16 month old who's having some myo's in his high chair as an example for you to see. (I don't normally do this, btw.) His head does drop, yes, but his arms and body also jerk/have tremors at the same time.

If THIS is what Sean looks like when he's having his 'head drops,' then yes, they may very well be myos, but only a neuro can say that for sure.



Hope it helps.

Meetz
:rock:
 
Luke's seizures consist of head drops only - He does not have any assocaited arm or leg movements.

So, myoclinics always inclue some form of arm / hand movement???
 
Myoclonics most often involve the whole body or a hand or leg. The movement is more of a twitch or jump, then a "drop."

Head drops can definitely be "small" atonic seizures. Atonic seizures can happen while sitting (in addition to standing or walking), and can just involve the head drop (which is the releasing of the neck muscles).
 
Update - Pead neuro Consultation

THnaks for the input in relation to the seizure types.

My Paediatric Neurologist observed him having a little seizure during our last consultation. She believed them to be myoclonic or tonic seizures, but she says it is very difficult to distinguish betwen siezure types.

Guess it isn't hugely important what the name of the seizures are at the end of the day.

Luke is now up to 10 mg/day on lamictal, which is still a very low dose, and is responding rally well. Atonic and myoclonics (if that is what they are) have dropped to about 5-10 per day, and absence seizures have stopped altogether. Fingers crossed, lamictal seems to be working.............
 
Great! I'm so glad the meds are helping.
 
Update - Good news

Just thought you may all like to know that we had a little breakthrough yesterday.

Luke had his first seizure free day! :banana:

Lamictal (20 mg/day), fingers crossed, is working..............
 
That is so great! Oh that's wonderful.
 
One month seizure free

Luke has just had his first month seizure free! In this month he has made wonderful progress:

1) We have weened him off Topamax, which was inhibiting his appetite. His weight for age was below the 3rd percentile. He has put on about 0.5 kg's since going off topamax (2 weeks ago).

2) He has said his first word, "Mamma".

3) He is much stronger, and able to pull himself up, from lying down, and is even able to climb up to a standing position. Previously, he wouldn't dare attempt these things for fear of hurting himself if he had a seizure, and he also simply didn't have the strength.

4) He is much happier, and this is the most important improvement.

For us, Lamictal has been like the silver bullet, where all other AEDs failed, Lamictal completely suppressed the seizures. From what we have learnt, if three AEDs don't work, a fourth one is very unlikely to be effective. Because of this we feel incredibly fortunate, and blessed.

Thanks so much to every one for their support.
 
That's terrific news! Thank you for updating us.
 
That is so fantastic, Luke is so young & already he's gone a month without a seizure.

I"m 50 & I'm happy if I go a week without one.

Congratulations!!!!!:woot:
 
Epileric,

Thanks for your kind words.

Knowing what you have to live with, we know how lucky Luke is right now. You must be one tough fella. It is people lik eyou that have been such a great help to us over the past 7 months or so.

Cheers,


Sean
 
Update: Do you think these are these seizures?

Well, it has been nearly two months since Luke had his last atonic seizure, but we have noticed some unusual body movements over the past few weeks that have us worried. They are:

1) Shaking his head from side to side.
2) Raising his arms, so his elbows are about level with his shoulders and, with his elbows bent, flapping his hands.

Do you think these could by Myoclonic type seizures?????


Regards,


Sean
 
Update

G'day all, just thought I would give you an update.

Luke had been travelling pretty well up until last Thursday morning. It all started the day before when he started to feel unwell, and was irritable all day. He was at his Grandma's house, and she insisted he stay with her as it was a cold Winters night down here. She loves him so much.

Anyway, she gave him some panadol before he went to bed. She then woke up when she heard Luke making strange noises in bed - he was having a full blown Tonic/clonic seizure. She called us and we raced over. He had three more that morning, one lasting 4 minutes.

He spent the day in hospital. His Paedeatrician said they are still waiting on a diagnosis, and may put him on Epilim. He upped his Lamictal dosage by 15%, and then he broke out in a rash, ARRGH! Very stressful. The rash seems to be related to the viral infection he had, but made us worry for a while.
 
So sorry to hear about Luke's breakthrough seizures. I hope he feels better soon. Infections can lower seizure threshold, so maybe that was a contributing factor?
 
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