Keto Tips

Someone on our keto diet group mailing list is assembling a list of tips for new parents starting the diet. She goes to Johns Hopkins and is acting as a parent advocate for other parents who are beginning their keto journey. I emailed her a list of my tips this morning to add to her handout for new parents but I thought I'd post them here as well for anyone about to embark on the wild roller coaster that is the keto diet:

My tips:

1. Supplies:
- masking tape and sharpies (for labeling pre-made meals quickly and easily).
- Gerber bowls: http://www.amazon.com/NUK-Gerber-Bunch---Bowls-Colors/dp/B000RFC3BM/ref=sr_1_1?ie=UTF8&qid=1298911571&sr=8-1
- good spoon shaped spatulas (I got mine at home goods)
- 2oz and 4 oz portion cups from costco or restaurant supply store

2. Foods:
- Don't make it a huge challenge for yourself the first weeks by trying tons of different recipes and experimenting. choose 2 simple dishes for each meal and alternate between them to first get your child into a good consistent level of ketosis and know that there are only a few ingredients that can be affecting the diet at first (keep it simple with whole foods, real fruits and veggies and only 4-5 ingredients per meal at most).
- Don't be afraid to give yourself a keto cooking break once in awhile and just use the ketocal formula or simple meals like eggnog. If you're rushing or going out to eat and you want to make it easier on yourself, these are great quick solutions.
- cook in bulk on the weekend. We make all our meals and elements of meals on the weekend so during the week we only spend about 10 minutes per day doing keto assembly (or weighing out fresh cream for the bottles,e tc).

3. General tips when starting the diet:
- Set a goal for yourself that is realistic. Don't expect "seizure freedom" from Day1 and don't be surprised if things get worse before they get better...treat the diet like a med in that sometimes you have to titrate up to the right "level" before you see good results.
- Don't make your goals related to just seizures...include things like increased awareness, development, attitude, etc and the ability to wean off of 1 or all of your seizure meds as a goal as well. This way you can still achieve something even if you don't get seizure freedom right away.

And my biggest tip of all: DON'T CARRY THE KETO WEIGHT ON YOUR SHOULDERS ALONE! Enlist a partner, husband, wife, mother, brother, sister, neighbor or cousin. Get 1-2 other people educated on the diet and have them ready to pitch in once in awhile with the cooking, meal prep, recipe invention etc. It's so helpful if you come down with the flu or have an off week or if you're just so sick and tired of weighing out cream and oil and butter to be able to take a break.

Weekend Update

Here's some photos of the past weeks....

Pictures soon, I promise!

We have the ankle braces and the vest! Insurance won't cover the hip helpers so the rehab clinic gave us the measurements so we can order them ourselves out of pocket. They are essentially stitched up shiny bike shorts and only cost about $15 so it's no big deal for us to buy a couple pairs on our own...

I will get some pictures of Oliver in his new kicks as soon as we buy him some big boy shoes this weekend and then I will post...

Today we had our stander fitting at RIC. We're getting this stander: Prime Engineering Super Stand in bright shiny candy apple red! The diva in me wanted the violet purple...the mom in me thought blue was more appropriate for a boy...and the mother to a special needs child with vision issues decided that bright red is best since it's the first color babies can see beyond black and white. It will probably be a long time before we receive it but I'm very excited!

Oliver was very fussy and cranky due to some GI discomfort when they placed him in the stander, so I spent most of his first time standing trying to soothe and comfort him...it was probably a good distraction because it brought me to tears to see him standing. I was so happy to see him standing and so sad at the same time that he even needs a stander. Very bittersweet moment. Luckily Oliver's crying and distress served as a great distraction and didn't allow me to wallow in my own misery. Smart boy!

We also test drove some chairs and will be placing an order through EI for a feeding/therapy/general hanging out chair very soon.

Oliver's ear infection is clearing up and he has been having a pretty good week aside from a seizure on Tuesday.

Spring is Here!

We've finally been able to get the boys outside at the park and enjoy some warm spring weather. It's been such a relief to get fresh air and sunshine! Oliver has been doing really well in the stroller as opposed to last spring/summer when he cried nearly all the time. It is nice for us to be more confident in bringing him out with his brother.

Oliver has his first ear infection since getting his tubes in. The nice thing about the tubes is that the ear just starts discharging all the gunk so we knew right away that it was infected and started the drops. Also, since he has the tubes to drain everything out, there was a lot less pressure in his ear during the infection so he never really got fussy or spiked a fever. It's so nice to be able to diagnose something in our son quickly and easily and start a treatment right away!

Oliver is now the proud owner of some ankle braces and a Benik support vest for his trunk support. We are building up his tolerance to the ankle braces by having him wear them for an hour more each day until we get to the full 8 hours. This weekend we are going to go shopping and buy him his first pair of shoes to fit over the braces, then we can start some weight bearing exercises! Thursday he'll be fitted for a stander, very exciting.

Eyes

I have been thinking about Oliver's eyes lately. I hate that he can't see. It might sound like one of the more minor issues considering everything Oliver has to deal with, but developmentally it really limits us.

When we first chose Vigabatrin for him as a medication we were told the risks would involve a decrease in retinal vision with long term/high dose use. I remember thinking "so what?". If it cures the spasms and gets rid of the IS, I can give up some vision. So what if he has to live in a city and ride public transportation instead of driving...so what if he needs a seeing eye dog? Those dogs are cute! I didn't quite grasp at the time that it wouldn't be his total vision but just his peripheral vision that was affected...I also didn't consider blindness to be that severe of a disability in general if he still had cognitive abilities and was physically able to walk, dress himself, etc.

Now as we're faced with accepting the fact that Oliver is going to be severely impaired both cognitively and physically, it seems rather unfair that he doesn't at least get the gift of vision. I think so many of his setbacks come from the fact that he can't see. Why should he roll over? what's tempting him on the other side, if he can't see a toy, a ball, mom, dad or brother? Why should he reach for a toy if he doesn't know it's there. How can he grab a cup and take a sip if he has no idea it's sitting in front of him? We asked for a vision evaluation from EI quite awhile ago. After months of hearing that they had no record of the paperwork we finally confirmed that our coordinator did submit the paperwork and that the vision therapists were going to contact us soon. It's been over a week since that promise. I , once again, have to pick up the phone and start bugging people. It's very frustrating. Hopefully we can get his vision eval sometime this month!

We received a referral from our developmental pediatrician to an organization called Lekotek. They have adaptable toys for impaired children and I'd love to know what they have that might help Oliver.

We did recently have another ERG to check retinal function. The results are similar to the ERG we had back in July 2010 and October 2010. They don't think his eyes are being affected negatively by the meds as of this point. That's good news and we hope that continues. In the doctor's note she mentioned nystagmus (which we knew about), IS (yup), CDG (yup) and exotropia (HUH?!?!?!). Apparently exotropia is a strabismus, or a turning of the eye. I have heard of CDG kids having this, but never Oliver. We'll have to ask her about it at our next appointment. In the meantime I've been researching the various diagnoses Oliver has been labeled with and found this great blog written by a young woman who has had nystagmus her whole life. It's interesting to hear about it from the perspective of someone who has grown up with it since birth. Click here to read more about it: The Shifty Eyes Blog

Seizure wise we were able to close out both February and March with 3 clusters each month. That's 6 clusters in the past 2 months. That's really low for Oliver, meaning we cut his seizures in half (at least) and the past 4 seizures haven't required any rescue meds. This is such great progress and is so encouraging to us to continue weaning his medications and plugging along with the keto diet.

So far for April our seizure cluster count is: ONE. we're only 4 days into the month so I'm hoping that he won't have many more but we are in the final stages of our Vigab wean and I know this could be the roughest part of it. This morning he was just off, and I could tell he'd be having a seizure at some point during the day. I was not surprised to hear my phone ringing 15 minutes after I left the daycare this morning with the report that Oliver was seizing. Today's seizure was a bit different. He had a ton of general whole body shaking throughout the 10 minute cluster of spasms. My poor boy. He goes through so much.

Tomorrow he has his 18 month checkup at the pediatrician. I assume our Dr will want to continue our efforts to catch Oliver up on the shots. I know he needs at least one more of the pentacel and the prevnar...I also know 18 months is generally the time our practice likes to give the MMR. So we'll likely do one shot per month for the next three months and then see what else we have left to give. I hope the shot does not derail our recent level of seizure control.

After the dr's appt we have a visit from a developmental therapist from EI. I'm not sure what developmental therapy entails but I'm excited to find out.

On Friday we go into RIC to pick up Oliver's AFOs, hip helpers and Benik vest. Then we'll be ready to do some shoe shopping to find REAL shoes that will fit over his ankle braces. I am so excited to get him standing a bit more now that he'll have the proper support. Fingers crossed there won't be any insurance hiccups that prevent us from getting the equipment!

I will try to get some updated pictures of Oliver with his new stuff and post them after the weekend.