Spring 2012

Looks like we might be going off Keppra!!!!!!!!!!!! We will be two years seizure free in early June of this year. The ‘usual’ rule of thumb is two years seizure free= wean off meds.
Ella is still having intermittent ‘sparkly’ limbs in the middle of the night. They happen very infrequently now. We had some in October 2011 and then had a pretty long incident in March 2012. She has had these while hooked up to EEG but they didn’t register as an event. Docs have always thought they were probably very tiny very deep seizures. Soooo I am a little confused. I really really want her off the meds but am concerned bec of the sparklys…???

The plan right now is to admit her to hospital for 48 hour VEEG while taking her off the Keppra for first night, do some testing while she is a bit sleep deprived. if EEG is normal the entire 48 hrs then she goes home w/ a weaning schedule. If it is not normal we re-assess.

Still trying to take this all in. So happy the Keppra has worked so well for her and the side effects have been minimal. We’ll see.

Autumn 2011 update

Ella is doing really well. She had another ambulatory 48hr EEG done in ealry Sept…results came back perfectly normal (Thank You Keppra!). The checked her blood levels of Keppra (for the first time) and those were on the low end. Since she is doing so well we decided to leave everything just the way it is.

Our integrative neuro wants to do some additional testing (that is VERY expensive). Testing her for things like heavy metals, carcinogens and other some other chemicals. We will probably do the heavy metal test since it is the least expensive and her lead levels have always been at a 3 or 4, which is something that has always bothered me. So we will try and get ourselves in gear to get that test done. in the meantime she is on MORE supplements and is not that happy having to take all her ‘vitamins’ 4 x per day 😦

Ella turned 5 in August and could have gone to Kindergarten. We decided to hold her back for a year and have her do another year of nursery type school. We started at a new school-Montessori- and she is loving it. The BRE and/or the Keppra makes her tired and she still naps most days, therefor it didn’t seem right to start her in a 7 hour kindergarten pgm right now. Another year of half day school was the best choice for us.

Happy Autumn. thanks for reading!

Our Doctors!

I have had so many questions lately re: our doc’s…

Holistic Pediatrician
Dr. Larry Rosen

Dr Devinsky and Dr Ray at NYU Epilepsy Center

Integrative Neuro:
Dr Shetreat- Klein

Integrative Neurologist visit 3/2011

So I FINALLY did all the specialty labs and follow up lab work w/ Ella. Joey Cooper was having such a rough time w/ his HD and Ella has been doing SUPER FABULOUS 🙂 so her stuff kind of got put on hold for a while.

Labwork was done via Genova Labs and Metametrix. She had blood work for IgE and IgG allergy testing. It came back as SEVERELY ‘sensitive’ to eggs, dairy, soy, ginger, sesame, pistachio, cashew (anyone remember our trip to ER back in 7/08 when we thought she had allergic reaction to cashew nut butter, but all tests said not allergic). So we are TRYING a allergy free diet and it is NOT fun. I feel like there are hardly any choices for her and she keeps wanting CHEESE- her fav.

Her stool tests came back OK…she needs more good bacteria so we changed her to her brother’s HIGH dose probiotic (http://klaire.com/prod/proddetail.asp?id=K-TCP). Also started her on Florator and prebiotic.

Her urine metabolic test was a mess. I cannot even explain it because I still don’t understand it. Basically our cells have jobs to do and her cells are tired so they are either not doing their job or doing a bad job or only completing 1/2 of their ‘assignments’. So she is being supplemented some more to try and help these cells re-energize and do their job.

Her supp’s look something like this:
breakfast…multi vit, multi mineral, probiotic, Bcomplex, B6
lunch- vit’s, min’s, mag/calc, omega w/ CoQ10
snack- prebiotic, Florastor, cal/mag
dinner- vit’s, min’s, probiotic, b complex
and then her keppra at bedtime…it is so hard to remember that I have a chart posted on fridge for both kids and all their supp’s.

We go back in May and redo the metabolic test to see if any of the supp’s are helping. The neuro spoke very briefly about maybe having to detox her and I didn’t even ask what that meant because it is too much to take in right now.

Other than that, she is doing well. She has been catching EVERY little bug since January. I don’t know if it is the Keppra (one of the side effects is lowered immunity) or if she is just having an ‘off’ winter and is catching everything. She had a 12 day stomach bug in January. A head cold/cough that lasted most of Feb. March was ‘maybe allergy sore throat and now April and another head cold. Our ped thinks her 12 day stomach bug she had back in January wiped out her gut and it needs to rebuild to get her immunity back up. So we are working really hard on gut health.

That is all! If you got this far thanks for reading!

Neuro Visit 2/2011

Everything went well. They are keeping Ella in her current dose even though she has grown since she started it. That is good news. They believe her ‘sparkly’ limbs and ‘room feels far away’ are probably very small seizures that are happening deep in the brain. SHe has had these incidents while having an EEG and nothing was picked up, so that is why they feel they are pretty deep and very very small….so she is not really considered seizure free, even though she has not had a ‘traditional’ seizure since 6/2010. All and all a good visit. We go back in July for another 48 hr ambulatory EEG.

stomach bug=still have BRE

So after the normal EEG in November (2010) I let myself think that maybe, maybe, MAYBE Ella was ‘cured’; that the abnormal EEG’s over the spring/summer where the result of a weird growth spurt, or vitamin/mineral deficiency or something…….and that she got past it and the normal EEG meant everything was back to ‘normal’ in her body.
I was wrong!

She came down w/ a wicked stomach bug in mid January (2011). It stuck around for 10 days or so. During that time she was vomiting for a few days and then had diarrhea for a few days so obviously her Keppra levels were off. Her ‘weird’ nighttime ‘stuff’ came back. Sparkly leg or arm, room feeling ‘far away’, weird night time or nap time wakes w/out really being awake. NO SEIZURES (thank goodness), but she definitely was back to her pre-medication nighttime state.

SO now we are even more grateful to have found a medication that is obviously working really really well for her (as long as she doesn’t have a stomach bug!!!). I hope and pray everyday that it continues to work for us w/out any side effects. I also pray we can stay at the level we are at and not have to increase her dosage.

She is still having some night time ‘stuff’ but less frequent and I am hopeful that in another few days we will all be back to normal. She has been well for about two weeks so hopefully very soon all her levels (keppra and vit/min) will be back to norm.

We see her neuro in a few weeks to discuss.

NORMAL EEG!!!!!!!!!

Ella had a 48 hr ambulatory EEG in early November (2010) and it surprisingly came back NORMAL. No spiking at all. AMAZING.

We are shocked. She has had a 30 min EEG, 24 hr EEG and 48 hr EEG (all in May-June 2010) and all of them came back abnormal. The majority of the spiking was overnight but even during the day there were a few periods of abnormal activity.

She is only medicated at night and is on a very very small dose. So the med’s are working and maybe her body is coming back into balance. We will continue to do what we are doing and have a follow up in February w/ her doc’s at NYU.
Very, very, very happy 🙂

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