Upping the meds again

Well  i thought that may be, just may be we can tell the doctors we want to experiment and may be go off the meds since we are not sure they are doing much, but after another fit this past sunday we are instead going up half a pill. 

Her blood level of depakote had gone down probably because she grew, so they think tha's why she is having seizures again. I just keep thinking about the 3 months we had seizure free and wonder how can we get there again.

But is i am to prove that the meds are not working then i guess i can try going up the dose and see what that does.

Apart from seizures she is doing fabulous. Getting more and more fascinating every day. It always amazes me that I can tell her something and she understands me. It's so rewarding and so much fun to play with her.

Daddy's gone again. Off to Las Vegas this time. I don't think he reads my updates anyway.

Oh well, at least we'll have peace for a few days again. I hope Madison does well. she doe miss him when she is gone. So do I... but then it so much calmer  around here when he's not around.

E

What a day!

Oh God, it's been a long one! Where to start? Let's see

I couldn't post pictures from yesterday because Madison had another small seizure last night. It was kind of my fault, though. she wouldn't stop pulling the plug on the humidifier so I put her in her crib while I get ready for bed. She cried and got mad and and really angry that she was stuck in the crib. After I took her out after no more than 5 minutes she couldn't calm herself down and seized. It was only two minutes and she recovered but she was still upset and wouldn't stop crying. She cried for almost an hour until I woke up my husband at 1 am in London so she could hear his voice. After that she fell asleep and was fine in the morning.

Today started much better. We were up and all happy and then my nanny came to take her out, so i finally managed to put this house in somewhat of an order. Everything was going great until I took some Benadryl for my not going away allergies . It didn't affect the stuffy nose at all but it made me super silly.

On our way to Lynbrook to see the accupuncturist, we got off at Times Square instead of Penn Station and it took five minutes going up and down the elevator to figure out I am at the wrong station. Anyhow we made the train and got there, had a good session. Madison is more fascinated with the needles that afraid of them No reason not to be. After all the times she has been poked with needles these are probably the least painful and it makes her  calmer and happier.

We almost missed the only train back ( the ONLY for about 20 min, but i didn't feel like standing on the Lynbrook Platform for half an hour).  I ran to the station and carried her up the stairs with 5 minutes to spare.  It wasn't very clear which Platform is which and it took a good 4 and half minutes for a very unhelpful old lady to tell me that I have to be on the other side.

So carry her back down 3 flights of stairs and up another 3. I tell you the stroller and her weigh over 30 pounds but I did it in the 30 seconds I had.

So we made it back and she is now napping ( off schedule I know) but daddy is coming tonight so she can stay up a little bit later and see him. she did miss him a lot.

And finally the silliness is wearing off, the allergies are still going strong though!

E

Happy anniversary

can you believe it's been only two years.

another fun day

WE had another long day full of silly little stuff.

Madison was again happy as can be. She visited the Children's museum with her nanny and only slept for 40 minutes  in the morning so she is now passed out in the bedroom. Yes, it is 5:41 and I wonder how long she will sleep and would that interfere with her bedtime.

I managed to clean  one room up  and made some cupcakes. Of course running out to our playdate before the cupcakes were cool I stuck the icing in the refrigerator and it  turned back into very sweet butter. I should have known better after i spent hours bringing the butter to room temperature.

Meanwhile my nose won't stop running, I don't even know if it's a cold any more, it feels more like very annoying and stubborn allergies.

Madison had a blast at her friend's Lance house. I know they are very young but they were actually playing with each other. They followed each other, took the other's toys, teased each other and all other fun stuff. It was actually a lot of fun to watch them interact.

That's why she  is so tired now so I had to let her sleep even though it's late.

I don't have any pictures of the playdate b/c i forgot the camera but here are some pics from today.

E

I keep forgetting ...

i always forget that the pictures upload from bottom to top so the order of appearance is upside down.

E

what we did today

Since Daddy is gone on a business trip I figured we can keep a picture log of Madison ao he can see what she did that day.

so here we go in order of appearance: we played home  with our toys and drank some milk. 

After Sonia left we went to Dunkin Donuts where we had a snack ( don't worry she didn't have donuts, but i did nurse my cold with a hot chocolate) and then we froze our butts off in the park but we spent 10 min on the swings and Madison was delighted.

She only had one 1 hour nap today. Normally I'd be worried that she hasn't slept enough  but after  her acupuncture/ acutonics treatment on Saturday she has been sleeping so much better  at night and has been so much happier and energetic during the day I think she can go down to one nap a day. Of course she needs more than one hour but we are working on that.

E

Growing up

As Madison grows up so do I. Having her around makes me feel like a child again most of the time but she teaches me so many lessons.

We had a rough weekend. Went out to Long Island to do so we shopping and stayed late so we spent the night over my brother in law's house. Madison had 3 seizures that night. she's never had that many in such a short period of time.

At first i thought I had overdressed her and she overheated again. But after the second seizure we knew something was wrong. 

Problem is we still don't know what is wrong. She has been very tired and lethargic for the past three days. She can barely walk that;s how weak she is and she's very needy.

I love the fact that snuggling makes her feel better but I don't have my hands free for a minute. My house is a disaster. But then that's nothing new, anyway.

My lesson this week...something i have had suspicions for a while now.

Doctors don't know much more than we do. I do wonder why they spend all that time i medical school paying the big bucks so they can add MD to their name.

Apparently it makes them feel all mighty but the truth is they are still human.

No offense to doctors I do like most of my doctors. But when it comes to my little girl they can't give me any answers and that drives me crazy. We've been talking to the neurologist's nurse and it's all a guessing game. The most they can do is order another EEG. I don't think Madison will appreciate being glued to a thousand wires for the 5th time so that they can tell me that everything is they it is supposed to be. Getting the glue out of her hair isn't that much fun either.

Meanwhile we saw her pediatrician yesterday and according to him she is the healthiest child alive. He did tell me she has two molars coming in. Do you think I didn't now that?

Poor child has been in pain for a couple of days now, all drugged up on Tylenol and Mortrin so she can sleep.

I am going to try some accupuncture and acutonics for her. The lady may not have an MD in her title but I am hoping she might have some more insightfulness and healing wisdom.

Or who knows it may just be another lesson learned.

E

just some thoughts

Madison had another seizure last night, in the bathtub again.

We think she may overheat and the spike in core temperature triggers a seizure. The doctors said it was possible and told us to limit bath time.

But it is something else that is bothering me.

My grandfather passed away this weekend and my mother told me that he had  low blood pressure and because of the lack of blood in the brain he had brain atrophy.

Now that made me think. Since the low blood pressure apparently runs in the family- i have and so does my mom, Madison could have inherited it. Can her low blood pressure cause or trigger seizures. If there is not enough blood going into the brain, there is not enough oxygen delivered. Can that cause seizures that are nonepiletic? Or can it trigger the abnormal electrical discharges that cause the seizures.

The other thing I have is sudden drops in blood sugar. It usually happens late in the afternoon, or if i haven't eaten enough. Those can cause irritability, lightheadedness, dizziness. Sometimes they make me feel like my whole body is shaking- I think it really is shaking a little, but the sensation is like i am shaking a lot. It also makes my state of mind altered -like, everything becomes very vivid and I think i lose my peripheral vision. Anyway, it sounds crazy, but that doesn't happen very often.

Still it makes me wonder because i found sites that say that low blood sugar can cause seizures. 

Of course the doctor's reply to that was No, it can't be.

But the truth is that if they don't know what it is, how can they know what it isn't.

May be it is that simple and she doesn't need to be on medications that hinder her progress and god knows what else they do to her.

Just some thoughts...

if anyone knows more please share.

E