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 ( 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 🙂

integrative neuro appt

So in addition to seeing our regular ped. neuro at NYU we are now also seeing an integrative neuro. She met w/ us for 2 hours last month and we talked about a lot of underlying things that MIGHT be causing the seizures. She believes that the seizures are a symptom of something else going wrong in the body.

First step was lots and lots of blood work. They took about 8 vials when we went for the blood draw. They tested things like thyroid, kidney function, electrolytes, some allergy testing, vitamin/min levels. Most came back fine but she was deficient in a few vitamins (folate, Vit. E, selenium). She was also on low end of magnesium and her Vit. D levels (which were low back in the winter before all this started) were a bit low again even though she has been on a supplement (we had lowered her dose, as per ped., in summer months).

So now we are getting samples ( of some new vitamins that are more easily absorbed and we will start her on a better multi. She is taking so many supp’s now….Multi, calcium, Vit D, Omega’s, probiotic, B-Complex, B-6. It is hard for me to remember to give her everything.

The next step is to do more allergy/food sensitivity testing through a specialized lab ( The dr. also highly suggested trying a gluten free diet for a couple months. This just about sent me over the edge. Not because it is that big of a deal to try. I know I can successfully do it however w/ everything that has been going on w/ Joey Cooper ( I cannot handle anything else right now. So maybe in a couple weeks.

Her celiac test was negative, but that test is not very reliable. We are having JC tested for celiac as well, but he has tested neg. in the past so I don’t imagine anything has changed in the few months since his last blood work.

We see her ped neuro in a few weeks. She is doing REALLY GREAT! Fine w/ Keppra, no side effects at all. No seizures. An occasional ‘sparkly’ arm…but that is not worrying me since it is so sporadic. She is sleeping much better. Happy, healthy, smart, growing, outgoing, easy going little girl- that’s our Ella.

Week 3 on Keppra

We decided not to up Ella’s dose last week (she should have gone up to 3 ml’s).  After the tantrum episode I was a nervous wreck that going up would produce another bad weekend.  We called and checked in w/ our dr. on Monday to ask if we could stay at 2 ml’s and see how she does.  He agreed that 2 ml’s would be fine.  So that is where we are and things have been really good.  Her behavior is back to ‘normal’ and no sparkly arm in a while.  She is still waking up 1-2x per night just crying out for us and we are trying to figure out if it is habit, side effect of med (waking up feeling sad so crying out) or something else.  We did have one night last week where she didn’t wake up, so that is good AND she has been sleeping (or at least staying in her bed) till 7am so that is good also.  We are used to having a FABULOUS sleeper…since she turned one she goes to bed around 7:30pm and sleeps till 7am and we usually never here a peep (until the sparkly arms started in March 2010).

Hoping to find a new ‘normal’ here in our house!

Week two: Keppra- 2 ml

Week one (1ml at night) went fantastic. Luckily Ella loves taking any ‘medication’ (mostly vitamins) so it is easy getting her to take the Keppra. Week one was uneventful…no seizures, one episode of sparkly arm at nap (when she no longer has meds in her system) and NO side effects!!!

We started upping the dose on Fri July 9th. She did fine the first night/day but the second day was not fun. She was very ‘tantrummy’ (making up my own word) today. Not her usual self…the screams when we had to come inside after playing outside were the loudest I have EVER heard come out of her little body. Nothing calmed her down; and she is usually very easily distracted/calmed down when things are not good. It was really really really hard to give her her evening dose tonight. We just don’t want to medicate our little girl. I HATE THIS.

Meds started

We have talked it out.  Researched.  Talked to our pediatrician.  Thought, prayed and finally decided to start the Keppra. We SLOWLY wean her onto the meds.  Starting w/ 1 ml (100 mg) at night for a week.  Then over the next two weeks increasing to her prescribed dose of 3 ml (300 mg) per night.

We will also go see an integrative neurologist to talk about some more holistic things we can do to help Ella’s body/brain w/ the stress of the spikes (she could/is probably still spiking at naptime-since no meds on board during the day).  Also going to see a chiropractic neurologist and homeopath.  ANOTHER summer of doctor appt’s  😦

Joe and I are so holistically focused and medicating our daughter every single day for probably a minimum of two years is really really hard for us to accept.  We strongly considered trying the more holistic route first…but she is spiking so much at night and we are very nervous about cognitive delays being caused by those spikes.  Probably nothing to worry about in terms of her learning, memory BUT another gray area in the land of BRE…they really don’t know.

So far, so good.  The side effects of this med are scary and we hope she has NO side effects or if she does she will sleep right through them.  So far we have noticed no changes at all…except for better night sleep.  Since the seizures Ella has been waking almost every day sometime around 5-6:30am.  No big deal as we can go in and either deal w. her ‘sparkly’ arm (tingling that may or may not be a mini seizure or just BRE symptom, another gray), or we deal w/ whatever her complaint is and she goes back to sleep till her nightlight goes off at 7am.  The past three nights she has slept till 7am even w/ Joe sleeping on the air mattress on the floor next to her!!!!!!!!!!

So the next big hurdle will be next weekend when we increase her med’s.  Oh and MRI we were supposed to get.  Our doc’s said since they are 95% sure this is BRE we do not need to have the MRI.  They really did not want to expose her to anesthesia unless absolutely necessary.  yah.

second opinion and clear diagnosis

We go into NYC for our second opinion.  Dr. Devinsky at NYU.  We see two doc’s at NYU comprehensive Epilepsy Center; they work in a team.  They think her EEG’s are a bit atypical for BRE (Benign Rolandic Epilepsy) and want to do a longer EEG to get a better idea of what is happening.  We can do a home EEG (how cool!).  We go into NYC on a Friday, have Ella hooked up.  She is attached to a mini computer which is recording her brain activity for 48 hrs.  She does GREAT and never complains even though she has 20+ wires attached to her head and hanging off her head ( Joe calls her Rupunzel!).   We keep the ‘computer’ in her backpack which she wears or has right next to her all the time.  By Saturday she is used to it and able to carry on about her day w/ all this ‘stuff’.  I really am amazed by her patience w/ it all.  We unhook her on Sunday and Joe drives into NYC early Monday to drop off and have the EEG read.

We here from Dr. Devinsky on Wed to say 95% sure it is BRE…the better diagnosis.  We see dr’s on Monday and think they will say no meds needed.  We are wrong- sort of .  One doc does not think she needs med’s right now.  Although he calls this a very gray area and feels like we have to do what feels right/comfortable for us.  Dr Devisnky comes in and says that he recommends medicating her at night to calm all those abnormal spikes.  Also saying that there is no way of knowing if the next seizure will be much worse than the first two and then cause damage that cannot be fixed…scary.  Also said although she is sleeping fine it is not as restful as it should be.  He likened it to trying to sleep while someone is continuously poking you in the same spot  A   L   L  night long.  You could sleep, but you might wake more, toss more, etc.  Not very restful.

Decisions to make.  We leave w/ prescription for Keppra, a headache, a heavy heart and a BEAUTIFUL, happy, smart little girl.  It could be so much worse.

Abnormal EEG + second seizure= admitted

We go for Ella’s EEG at end of May.  It is quick, only about 30 minutes.  Her results are abnormal.  No seizure activity, but some abnormal spikes.  The neuro wants to admit her in the next week or so to do an overnight VEEG.  So we get that tentatively scheduled (they don’t tell you if you are getting a room till the day you are scheduled to come-depends on how crowded the EEG unit is).

Coincidentally on the day she is scheduled to be admitted we wake up to another weird cry coming from Ella’s room (6:15am).  She is having another seizure.  I grab the Diastat on the way into her room and we start timing the seizure.  It lasts less than a minute and she comes out of it much better than last time.  We don’t have to adminster Diastat.  We call and chat w/ neuro who wants to confer w/ the his partner who we have been seeing.  We finally get a call back mid morning and the EEG unit is very crowded so we need to be admitted through the ER so we have to bring her in and go through another ER visit…ugh.

We head to ER and are admitted to unit late afternoon.  Ella does GREAT loving all the doctor equipment and is playing dr. non stop.  She gets hooked up for monitoring, eats dinner and goes right to sleep without any fuss at all (she is so good).  Joe and I hang out in the hallway right outside her door!

The next morning we talk w/ our neuro and an epileptologist (neurologist who specializes in epilepsy).  Her overnight EEG was full of abnormal spikes…about 80% of her night was abnormal.  They are pretty certain she has Benign Rolandic Epilepsy.  She has a very good chance of growing out of it by puberty.  It comes w/ infrequent nighttime seizures.  Usually not a condition that warrants med’s; however her frequents spikes are cause for concern.

Unfortunately there is not a lot of concrete answers about this condition.  Are the abnormal spikes causing damage?  Maybe, maybe not.  Are the seizure causing damage…usually not unless they are longer than 20 minutes.

The docs want to put her on a medication called Keppra.  We are hesitant, want to do our own research and want a second opinion.  We then wait to have an MRI done- which never happens because we keep getting pushed back, it is late and we just want to go home.

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