update on my son, Brandon

[caiti]

Hey, maybe the extended EEG won't give you any answers--but maybe it will. You never know until you try although I can understand that all this testing without a concrete diagnosis must be incredibly taxing. All you can do is try. It'll get better.

 

[Ash]

Good luck, Jenn. I hope they are able to finally figure this all out for Brandon.

 

[Jenn]

I think the extended EEG will be of benefit, but since the neurolosgist is 90% sure of what is going on, I just wish we could start treatment now. The medication starts off slowly, to minimize any side effects, and it could be a couple of months before we see any improvement. But I'm just happy things are moving along as fast as they are. If we had stayed with Children's Hospital, we wouldn't have had any of this done yet. The waiting list was months long. So I have no complaints. I just feel bad for my boy. I tried so hard to eat right during pregnancy, nurse him for 4 years to increase his immunity and minimize the chances of allergies...he was just supposed to be healthier.

 

[lauralynne]

I just feel bad for my boy. I tried so hard to eat right during pregnancy, nurse him for 4 years to increase his immunity and minimize the chances of allergies...he was just supposed to be healthier.

You nursed Brandon for 4 years?!

I just KNOW they'll get this figured out for you, Jenn!

 

[Jenn]

You nursed Brandon for 4 years?!

I just KNOW they'll get this figured out for you, Jenn!

lol, yes Laura, I nursed both boys for 4 years, that's 6 years total!!! I had just done a ton of reading on the benefits of continuing nursing for so long and all the benefits of it...and since I was home anyway...doesn't everyone nurse their children for this long??? :hmm:

He had a seizure this morning and was shaking badly. I put my hand on his chest and it felt like his heart was going to burst; it was beating so strongly and so fast. I hope that is normal for seizures. I need to bring that up with his neurologist...

I know he'll be fine because he is such a strong person. But much more of this and they'll have to medicate me! lol

 

[alpayton]

He had a seizure this morning and was shaking badly. I put my hand on his chest and it felt like his heart was going to burst; it was beating so strongly and so fast. I hope that is normal for seizures. I need to bring that up with his neurologist...

The racing heart is part of the symptoms associated with the type of seizure he's having. Per http://www.pksonline.org/seizures.htm "Simple partial seizures are further subdivided into four categories according to the nature of their symptoms: motor, autonomic, sensory or psychological. Motor symptoms include movements such as jerking and stiffening. Sensory symptoms caused by seizures involve unusual sensations affecting any of the five senses (vision, hearing, smell, taste or touch). When simple partial seizures cause sensory symptoms only (and not motor symptoms), they are called "auras." Autonomic symptoms affect the autonomic nervous system, which is the group of nerves that control the functions of our organs, like the heart, stomach, bladder, intestines. Therefore autonomic symptoms are things like racing heart beat, stomach upset, diarrhea, http://www.medicinenet.com/script/main/art.asp?articlekey=1900 loss of bladder control. The only common autonomic symptom is a peculiar sensation in the stomach that is experienced by some patients with a type of epilepsy called temporal lobe epilepsy . Simple partial seizures with psychological symptoms are characterized by various experiences involving memory (the sensation of deja-vu), emotions (such as fear or pleasure), or other complex psychological phenomena."

They should have asked you what symptoms he exhibits before, during, and after the seizures as part of the patient history, so they should already be aware of any and all symptoms he has been having, but if for some reason it was omitted or if it's a new symptom, definitely bring it to the attention of the neurologist ASAP.
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[Jenn]

Thanks, Amanda. I had mentioned a racing heart, but didn't get any feed back from the neurologist. He never said it was typical or not. But this morning's heartbeat seemed more severe than the past ones. He was shaking so bad. At least his hospital visit is Monday after Christmas, so we should learn more then...

 

[Dolyphinm]

I wish you luck Jenn.

6 years straight of nursing though ?!?!?! WOW...:shocked::confused1: My mom only nursed 1 of the 3 of us and that was my brother and she stopped after a month cuz he got her to bleed.

I think when I have kids I would stop after a year. You have some patience between needing to continually eat extremely well for that length of time too.

 

[Jenn]

newest update

Brandon had his 24 hour EEG performed around 2 weeks ago (he and I had to stay up all night so he would be exhausted for the test which helps bring on seizures, I guess). Brandon had a seizure during the test and this confirmed the neurologist's diagnosis of Partial Complex Seizures. Brandon started taking Lamactin (or is it Lamictan?) and will be taking med for at least 3 years. He has to be seizure free for 3 years before he can drive a car, etc.

The great news is that the day before we saw the neurologist for the med. Brandon had had only 1 seizure instead of his typical 7 a day. And from that point on, now 6 days, Brandon hasn't had ANY seizures at all!!!!! It shouldn't be because of the medication because the dr. said it would take weeks to become effective. But whatever the reason, I am thrilled to have him seizure free. We are still taking it one day at a time, knowing that he could still have seizures at this point, but it is looking really good for him at this time. He has his energy back (finally) and seems to be back to his old self!

So I am feeling pretty good these days about Brandon. We still have to watch out for any reactions from the med. he is taking, but I'm going to be opotimistic that all will continue to work out great, and this will someday be a memory and will be behind us, hopefully for good!

 

[leni]

Is the medicine Lamictal? I take it, it's one of those meds that's used for other purposes besides seizures sometimes. I'm so glad he's doing better and I hope he continues to do so.

 

[momenteller]

Woo hoo! I hope Brandon continues to be in good health! :dance3:

 

[Jenn]

Is the medicine Lamictal? I take it, it's one of those meds that's used for other purposes besides seizures sometimes. I'm so glad he's doing better and I hope he continues to do so.

I think that is the name...not good at remembering medications!!!

And thanks Leni and Kate! I'm hoping for continuing improvement!

 

[3CsMommy]

I'm SO glad they've got a course of action for you! *hugs*

His medicine is probably Lamictal, generic name lamotrigine (sp?). Iirc, rashes are a common side effect, and it needs to be taken with plenty of water, so check out that paperwork from the pharmacy closely.

 

[Ash]

It probably is Lamictal, Jenn. Lamotrigine is the generic for it. I used to get it confused with Lotramin when I started working at CVS and couldn't figure out why so many of our patients were on an anti-fungal...

Good luck with Brandon! I hope everything keeps going in a good direction for you guys.

 

[Jenn]

thank you! A classmate thought he might have had some seizures today in class because Brandon looked flushed and drank water, but Brandon typically is red and drinks a lot of water. I don't think this boy really knows what to look for, so he isn't very reliable. Brandon hasn't had one seizure at home so I don't think he actually had any in class. Only time will tell.

The last couple of days, though, he has had headaches. Yesterday it was a very bad headache in the morning and he had to take advil to make it finally go away. Today he had a minor headache after lunch. It went away on its own. Could the headaches result from the medication? He was getting headaches a lot last year in school that were quite bad, but there doesn't seem to be a reason why he is getting them. I don't know if they are tied in with the seizures or not...

 

[Helen1016]

I'm sorry I don't have any medical advice to offer, and also sorry that I stumbled on this thread so late...but you've made such progress on finding the explanation, how wonderful! Thank goodness you were proactive and didn't wait for that second appointment. It must be such a relief that Brandon's seizures are so few. I hope that the headaches subside altogether. Brandon sounds like such a great kid, having to deal with such a serious problem...kudos to you and your husband for raising him so well ...and on all that breastfeeding!

 

[Jenn]

thank you Helen! I appreciate your kind words. I guess something like this has just made me fully realize how much I love my kids!

 

[leni]

Watch closely for rashes, some people react to the Lamictal, that's why they have those starter packs to kind of ease into it. I don't remember having headaches with it, I'm no longer on it but it did make me nauseous though so watch for that. I found taking it with milk helped. It does have a gross taste to it and it does linger, so I would take it with strawberry flavored milk or something like that. Good luck and hope he keeps getting better and the headaches go away.

 

[3CsMommy]

Here's an online resource about it: http://www.drugs.com/lamictal.html

But the paperwork stapled to the front of the pharmacy bag will have a list of side effects and precautions too. I think headache is on the list, and it's not uncommon for drugs that affect the nervous system to cause headaches as you start it. (My antidepressant made for a rough couple of weeks.) Definitely talk to the pharmacist about the medication if you're concerned, though; you have to know what's going on so you can advocate for your kid if he needs it.

 

[Jenn]

thanks for the link. I have a starter packet right now for Brandon, so I don't have pharmacy paperwork on all of the side effects yet. The neurologist went over some of the side effects, including a rash to look out for after a couple of weeks or so. One day at a time, right?