Tuesday, December 30, 2008

Long Over Due Update

To bring everyone up to date...

For quite a while now Paige has been having questionable episodes that left us wondering if her seizures were back.

She was first diagnosed with epilepsy 2 weeks before her 4th birthday, following a seizure on a swing at the playground. An EEG showed continuous spikes and she was put on medicine. Her meds were changed a few times and she ended up on Depakote by age 4 1/2. Each subsequent EEG showed continuous spikes and her meds were adjusted. By the time she was 5 1/2 she was on a toxic dose, which was evident by her blood test results. We had changed neuro's a few times and finally ended up with one who explained that due to her prematurity, her EEG's may always be abnormal. The new neuro weened her from her meds since we weren't seeing any seizures.

Right after she turned 6 we moved to a new state. Her new neuro completely agreed with her previous one and Paige remained med free, despite each and every EEG being abnormal (continous spikes).

Due to the recent questionable episodes we headed back for an EEG 2 weeks ago. Last night I received a message from her neuro that her EEG was normal.

Was I jumping for joy? Nope. An EEG is a snapshot in time. A clean EEG does not mean that she is seizure free. What was also bothering me was that I was present for the EEG and witnessed the spikes myself. I also wondered how we could go from having abnormal results on EVERY EEG to all of a sudden having a clean one.

Today we met with the PA at the neuro's office. She also shared my reservation about the clean EEG. She did say that some kids "grow out" of their brain abnormalities around Pagie's age but was quick to say that she is also concerned with the recent episodes. She ordered a 24 hour video EEG, which Paige will have (in hospital) some time at the end of January.

I want to thank everyone for their well wishes, both in the comments and by personal email. The kind words mean so much to us.

As for the other reason why I haven't been posting to my blog as often... A few months ago I started feeling sick. Recognizing that I had gestational diabetes with my 2nd pregnancy, I pulled out my meter and started checking my blood sugar levels. It became pretty clear why I was feeling ill. Most all of my 2 hour blood sugars were over 250 (with a few at 300)! (should be below 120).

I headed off to our GP who was not worried at all. My A1c levels were somewhat within normal range which left him thinking that I may simply have an infection somewhere. After having an allergic reaction to the first antibiotic (sulfur drug) I completed a course with a new one. My blood sugar levels were still high, despite me changing my diet to include ONLY salad and croutons (no dressing) for all 3 meals a day. I had lost 5 pounds in only 2 weeks. The doctor was still not worried and sent me on my way.

Over the next few weeks I did nothing but sleep and eat salad, now without croutons. I could not introduce any carbs whatsoever. I was able to get my blood sugar levels close to normal but my morning sugar levels were never below 180. I had been feeling so sick for so long and now I was only eating salad and my weight was dropping. Granted, I needed to loose weight but it was coming off too fast. I decided to go to an endocrinologist. As he scrolled through my meter he became equally as concerned as I had been and prescribed medicine.

I'm finally starting to feel better but I still can't have many carbs without my sugar levels flying over 200. Due to the extreme fatigue, blogging became the one thing I had to let go for awhile.

I'm back now and have lots to say. Thanks for sticking around and I hope you all come back for the upcoming topics.

Have a safe New Year's Eve everyone!


Carrie said...

Glad you are feeling better.
Man, I wish brains were easier to figure out! Hope you get answers for Paige soon.

RhondaLue said...

Gosh, so sorry you're dealing with all of that! I hope you can get it all figured out soon.

I would be puzzled at the clean EEG as well. Hmmm...

she looks SO beautiful in that picture, btw!!

Anonymous said...

Glad you are back and hope you continue to feel better. Hope y'all figure out the seizure issues for Paige.


23wktwinsmommy said...

Glad your back Stacy. I hope things improve with your helath, and you get back to feeling better, and importantly are able to eat CARBS (I'm a carb freak myself!!!)

I hope the 24 hours at the hospital reveals some answers...Paige is in my thoughts...

tbonegrl said...

Stacy, I'd been worried about oyu! I hope you feel better soon, and get some answers for Paige!

Nancy said...

Hopefully the medication will help curb your blood sugars! I am a bit surprised that your GP said the A1c levels were somewhat normal. There is NOTHING normal about a fasting blood sugar (overnight) being around 200. My husband is a diabetic, insulin dependent, and has been since he was 14. We never let our GP handle anything about his diabetes. It's simply too easy for a mistake to be made as far as we're concerned. You might want to consider asking your GP for a referral to a nutrionist as well. Obviously, one that has worked with your endo would be ideal, but that isn't always possible. Talk to your endo about a nutritionist that he may know in your network if possible. When Matt's sugars seem to be a bit out of whack, he consults with a nutritionist for a while until they get back on track. Then he doesn't see her again until he needs it. The nice thing about the nutritionist is that she usually confers with the endo and the endo can tweak the insulin to aide what his typical diet is. The consultation between the two is priceless I tell you!!

I really hope the medication works for you and halts anything from progressing further. If there is one thing I have learned from my husband, it is that diabetes is a brutal disease. And one that is never stagnant. Which is so darn frustrating.

I would also instruct Paige on what to do should you begin acting a certain way, whether that be an effect of a high or low blood sugar. We hadn't done that with Caitlyn soon enough and we had a horrible episode of Matt passing out while I was at work and he was alone with Caitlyn. A break in to my house by a cousin, 2 fire trucks, and an ambulance later, we decided it was time for Caitlyn to learn what to look for, how to work the meter to test, and what to do with the results. Granted, Matt may be "more diabetic" than you, but it can't hurt to let her know how to react. and she is certainly smart enough to handle the information it seems.

Done rambling now, Paige looks gorgeous in the picture :)

liz.mccarthy said...

Oh wow stacy, and you had time to call me yesterday to support me! It just makes me feel even happier (better) to have you as an online friend (and hopefully soon an in person friend too)

I'm sorry you have all this medical stuff going on with you and don't have any answers with Paige's EEG...


terri w/2 said...


You are so correct about a "normal" EEG being only a snapshot in time. My daughter has had massive status epilepticus (grand mal) seizures since very young, and one has never been captured on an EEG. Her seizure meds have increased to the point, where it is causing significant letheragy. We are now seriously looking into a vagus nerve stimulator, (yes another surgery) and yes, another attempt at something with iffy consequences. . but if it does work, the seizure meds will be eliminated.

My thoughts are with you too as you grapple with this new personal health issue - it would have been probably better if the A1C had been really out of whack, then your diet adjustments would probably have been more effective? Hopefully, the meds will help.

Could stress from caregiving all these years be a factor?

Best wishes for a healthy '09.

Sheila said...

Wow Stacy ... what a plateful. Very worrisome about Paige - and frustrating since there's so much "well, we don't know, wait and see" about it. I guess the fact that she keeps getting older is a good thing in the sense that she's able to be a more educated reporter of her health.

It is very scary that eating nothing but salads yields you a fasting blood sugar close to 200 - that's insane. One of my best friends here in Cali was placed on several medications when her fasting BS was lower than yours (she's followed closely by an Endo due to PCOS). He was "expecting" the Insulin Resistance / Type II diabetes, and jumped on the first whiff of change. She feels much better. Hope the New Year is very, very, very boring for you and your kids (and of course DH).


Anonymous said...


Shouldn't you be eating proteins in addition to or instead of just salad?


medrecgal said...

Wow, no wonder you haven't been blogging much. It's good to see you're back, though. Hopefully the new meds will help the sugar issues, and you'll get some answers for Paige with that 24 hr. test. Let's hope things will settle a bit and get back to some semblance of normalcy for everyone.

Aidan's mom said...

So sorry you are having to deal with all of this, but glad you are pressing on to get some answers!

I will keep my fingers crossed for you getting your own health back in control. It must be so frustrating.

tbonegrl said...


ThePreemie Experiment said...

Thank you for all of the well wishes everyone!!

ThePreemie Experiment said...

Nancy wrote: "Talk to your endo about a nutritionist that he may know in your network if possible."

For years I tried to work with our insurance company to get the cost of a nutritionist covered, to no avail. It amazes me that insurance will shell out thousands to diabetes management but won't pay for a nutritionist, who may be able to help a type 2, like myself, become free of diabetes! Can anyone wonder what is wrong with our health care system?

My current endocrinologist also shares in my frustration and found a way around it. He has a nutritionist on staff and bills it out as an office visit. I'll be seeing her a few weeks and I can't wait. I can only imagine her face when I tell her that I am a vegetarian who is allergic to soy and mushrooms and is lactose intolerant. I can't wait to see if she has any food suggestions.

Nancy also wrote: "I would also instruct Paige on what to do should you begin acting a certain way, whether that be an effect of a high or low blood sugar."

We did this last month after a scary episode while hubby was home. I was feeling sick (who wouldn't after eating nothing but salad-no dressing or carbs-for 3 meals a day) and decided to check my sugar. As I was walking to the kitchen I felt as if I was going to pass out. My sugar level was in the 80's. That's not that dangerous but my body couldn't handle it.

Paige is really good about it all. When I was pregnant with Tyler she wanted to be the one to poke my finger, so I let her. She used to say that she was practicing being a doctor. She knows how to work my meter and now knows that she needs to call 911 if I become sick or pass out.

ThePreemie Experiment said...

terri w/2 wrote: "We are now seriously looking into a vagus nerve stimulator, (yes another surgery) and yes, another attempt at something with iffy consequences."

Hi Terri. I have only known a few kiddos who have gotten a VNS but all of them had wonderful results. I agree that it's iffy though.

"it would have been probably better if the A1C had been really out of whack"

I that my A1C levels are what is most frustrating. I have never had one under 6.9. Multiple elevated A1C levels should have set off alarms with the GP.

"Could stress from caregiving all these years be a factor?"

In a round about way... absolutely.

ThePreemie Experiment said...

Sheila wrote "It is very scary that eating nothing but salads yields you a fasting blood sugar close to 200 - that's insane."

I completely agree. The GP was basing his treatment decision solely on my A1C. Very scary. And to think that I chose not to go to an endo sooner for fear of what I would look like to the GP! That will be an upcoming blog post!!

On a side note... my fasting blood sugar this morning was 105 and I had a tortilla (homemade veggie quesadilla) last night. Yeah!! Woo Hoo!!

ThePreemie Experiment said...

tbonegrl... thanks for the link. I did see the published research in Pediatrics last week and have started a blog post on it.

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Anonymous said...

I guess I am a rare bird - born 8 weeks premature in 1956 I survived. I have all the metabolic problems cited on this web site. I also am epileptic. My epilepsy as well as my type 2 diabetes and my weight is completely controlled by a permanent low carb diet! This supports the hypotheses that we premies are born with a system adapted for malnutrition and optimized to live in a low carb world. If that is true it is a simple fix. As a living experiment I hope I can help someone else.