Weekly Update 6-26-2012

We have been doing pretty well in the land of us.  The kids are really taking to their school lessons, I'm making sure that we stay consistent during the summer so that their minds can stay active and flexible.  Even if all my children were "neuro-typical" (which they will one day be) I will do the same.  I don't believe that summer is the time to stop learning.  Learning is supposed to be a continuous process.  

They also keep the same schedules year around, although there is a bit more freedom in the summer not too much.  Here's why, summer vacation in the Michigan school district that we're in is roughly 81 days.  Because of my challenges and the challenges of my children it is not worth it to me to break a schedule because of the amount of time and energy it would take for me to get them back where they need to be.  Plus, in real life you don't get a summer vacation, not even if you're a teacher because many of them have to take on summer jobs like college students to supplement. So this is also a life lesson. 

So this weekend I made a discovery that proves my consistent point even further. My oldest son has pica, he eats non-food items. Now my husband and I noticed a trend, the problem gets worse on the weekend or when he is extremely bored or has a lot of unstructured time.  So this past weekend we caught him eating quite a few non-food items mainly rubber.  This has been going on for a while, my  husband said that he noticed it getting better with the Neuro-Feedback (I just noticed the seizures) but this surge in eating non-food items could also explain many of his stomach issues. I don't know why I never thought of this piece before.  

So we have decreased tv time again (we cut off our cable television service and have Netflix and Hulu it allows us to better control what our children are watching.), we constantly make sure that he doesn't have non-food items in his mouth, and try to reinforce that we only eat food.  It's going to be a long road but we'll make it.  

School work wise he is doing pretty good, working on his focus and attention to detail. Making him write slowly and neatly is a challenge but his working on it with some resistance. We are also working on his already strong math skills, reading recall, building on reading comprehension, money and time.  He got a summer bridge book from school and his teacher Ms. Wentz was wonderful to print a lot of work with for us to help us stay on his goals.  We have also started the SAS music therapy again to hopefully help with his focus and to perhaps help his mind with that sensory piece to help out with that pica. He has also started the chore of taking out the trash. There have been no seizures over the past week, nor have their been any seizure like preludes such as, bad gas, screaming, loopiness. He is eating less gluten (we're not entirely gluten free), we have decreased computer and television time, we are doing Dr. Goldberg's eating protocol by removing things with dies, or the color red. He takes aloe vera juice, lots of probiotics (by way of keifer and acidophilus) activated charcoal and Methyl B-12 tabs.

Jai Lynn is doing great this summer, helping in the kitchen and around the house, learning how to use a dictionary and look up definitions thus learning the meaning of words.  She is working hard on math. This week I have her adding multiple digits, we are working on the parts of speech, reading recall and comprehension and money.  Ms. Wentz also gave her a great packet of work along with a Summer Bridge Book and a Testing booklet to get her used to testing since she will be entering the 6th grade this fall.    She has also begun the SAS music therapy again, I have her listen while praticing her typing skills ( think I will have her brother do the same almost like neuro-feedback)

Mason is working on counting to 10, colors and the alphabet.  We are working on coloring on paper and not on the table or anything else that will stand still.  

The all have a chore, once they get comfortable performing that chore on a regular basis I will tie money into it (the life skill of getting paid for completing a job) but for now we are having fun learning.  

Well that is it for now.

Until Next Time,

Blessings and Recovery,

The Fuller's

First Doctor's Visit

So, this past Monday, we met with our pediatrician to get the process started for Marcus, Jr for Dr. Goldberg's protocol.  There are a few more pieces that need to be put into place and then she will order blood work for him.

In the meantime we have started with step one of the protocol which includes eliminating allergins from the kids diets.  This includes ALL supplements.  We have been doing the diet elimination for the past month, we have eliminated supplements for the past two weeks, and the changes that we have seen have been pretty good.

Marcus, Jr's seizures are now almost non-exisisent only happening about once every other week, no more four-five seizures in a day.  Jai Lynn's cognitive abilities have increased, she seems more focused and clear.

We have also gotten more verbalization out of Marcus, Jr.  Just this weekend when I asked Jai Lynn did she want water he said "me too." He just seems to be more aware of what is going on.

So we are working on the first step of Dr. Goldberg's protocol which is changing our diet and that is working quite well so we can't wait to add the other pieces so that our children can experience a true healing from this virus.

So, I will try to post everyday as this is not only to be a help to other parents but also a log and diary for us to see where our kids have been and where they are going.

So the tidbit that I want everyone to take today is this:
"Step one is always dietary elimination (including most nonpharmaceutical supplements). The key to helping the immune system is not how many different products and things can one throw into it, but rather how many negative stimuli (primarily foods or other non-pharmaceutically pure ingested products) you can remove form the immune system, in turn allowing the immune system the first chance to start to become healthier" - "The Myth of Autism, Dr. Michael Goldberg and Elyse Goldberg, Chapter 7 page 91.

So parents this means stop giving your kids multiple vitamin therapies at once, start with one and build. Doing multiple vitamin and alternative therapies at once will not necessarily help your child. From personal experience we know this.

True story, when our son was having multiple seizures a day we where doing multiple vitamin supplements (not sure if they where pharmaceutical grade or not I'm guessing not). We where doing:
acetly l carnitine
neuro protek
Divine Child drink
NADH
Vitamin D3
and a few others those are just the ones that I can think of off the top of my head. We didn't change what he ate, let him eat whatever.  During this time Marcus, Jr had extremely bad gas, so along with his Neurofeedback therapist we discussed  modifying his diet and taking out all gluten. As soon as we removed his main trigger (it seems to be regular spaghetti stick he likes to eat them uncooked) the seizures decreased dramatically. Once we removed the supplements they decreased even more and we got more language and clarity from Marcus, Jr. Yes he still has rough days, yes he still has problems using the language in his head, yes we still have a long way to go but that small step has allowed us to make progress.

So this is our beginning. I hope to have video up this week of the kids and their interactions, tomorrow I have to take some documents to their pediatrician and talk to her about ordering the neuroSPECT scans for each child.

This is step one in our journey, please stay with us.

Blessings and Recovery,

The Fullers

Been So Long

So, I have been neglecting this blog (I have 3 others), because this is the only one not linked to my main creative blog (gotta fix that). But, I'm back now. So just a quick update the kids are fine now but we have had plenty of ups and downs in between. It's been over six months since I last posted and life has been six months worth of crazy.

So let's start with Marcus, Jr, the seizures came back, we're working with his neuro feedback therapist and came up with diet. Now, those who read my blogs know I hate modifying diet, it's time consuming and costly. But, it appears that what he was eating was really messing with him. He was having really bad gas, his stomach was always rumbling and gurgling and he was constantly aggitated. Once we snatched the gluten from his diet it was almost instant, better attitude, no or very little bad gas and a happy tummy. Now, that's not all we did. We also added Aloe Vera juice and higher doses of probiotics, so far so happy. He is currently receiving neuro feedback once a week from Melissa Sklar of EEG Biofeedback of Ann Arbor, she is wonderful. She really understand the important role that diet plays in recovery. Do we still have challenging days? Yes. Do we still have a lot of ground to cover? Yes. But have we made progress? Hell yea.

Just this past Saturday, Marcus, Jr. came into our bedroom and asked to play with my cell phone (he likes Angry Birds), "phone please" he said so I gladly said "yes", he then took the phone and said "thanks" and I almost fell out of the bed! Although the thanks was a bit scripted he used it in the proper context without cues. He's been doing a lot more of that as of late, verbalizing without being told to and understanding what is said to him. That alone has made us as parents extremely happy.

Just this past Monday, his tutor even noted that he was extremely verbal and focused! Since we've changed the diet no seizures, little or no gas. More focused and a better overall disposition. Marcus, Jr. has come a long way in six months and we are so proud of him.

Now, Jai Lynn has made great strides also. She is really beginning to blossom into her own. She has been very verbal, she has really be "getting" social cues and really voicing her opinion (sometimes too much lol) and doing more age appropriate things. She is really catching up academically and learning more each day.

She is also giving us hope more hope to press on and recover our children.

My next few blog posts will be a bit more insightful and hopefully helpful to other parents.

Wishing you Blessings and Recovery,

The Fuller's

October 2, 2011

Hello all,

Today was pretty non eventful. Jai Lynn woke up with a mucus eye again. This time I didn't charge my cell phone so it wouldn't take a picture :-( But she had mucus just the same. Marcus, Jr. must have had a seizure prior to us getting him up because his bed was wet and his lips where a bit discolored when I woke him up. When I woke him up I asked him how he was doing and he replied "I'm fine" which is huge because he did it unprompted. I then told dad what he said and dad asked him the same question and he replied the same. The rest of the morning he was running and playing with his younger brother.

We went to get bagels this morning for breakfast and Marcus was very playful. Today there was a bit more scripting than usual but just about all of it applied to whatever he was doing.

Today both kids had a clay bath with activated charcoal after. The other supplements done today was NADH, Omega 3-6-9, Vitamin d3, Keifer, Acetyl L.Carnitine, Zeolite by Jai Lynn and Acetyl L. Carnitine , Zeolite, NADH by Marcus.

There where no more seizures today just the one that he had prior to us getting him out of his room.

We had all the kids in our room prior to breakfast and Marcus was having a great time, he was learning how to play with certain toys with daddy (they were battling with toy monsters) and that was huge that he was even willing to learn and participate. Marcus was "wrestling" appropriately with his younger brother and dad asked him did he love his brother and he said "yes".

Both kids did homework today, Jai Lynn took her spelling packet and completed two pages on her own. Marcus completed his spelling packet from last week and completed three pages of math from the Fast Kids Math book that I have. Jai Lynn needed minimal prompting only when Marcus was annoying her but she was able to complete her pages with classical music playing.

Marcus needed lots of prompting and focus help, he did a lot of tapping of his pencil, a lot of singing and looking around the room. It was difficult at times to refocus him but once refocused he worked on his math and spelling.

Today while Jai Lynn and daddy where in the family room my husband gave her a air kiss on her check and she replied, "you love me daddy." She also seemed to be getting better with asking questions and starting a conversation. Jai Lynn also changed the dates and month on the large calendar in the dining room and added all the dates that where important for the month. She counted down the day until Halloween (thus ending the Halloween conversation because now she has a visual).

Both kids had a pretty good day and we are looking forward to the great things to come.

We wish you Blessings and Recovery,

The Fuller's

*Please be sure to check out our YouTube channel at Ladycf1*

October 1, 2011

Woke Jai Lynn up to take NADH pill and she had lots of mucus coming out of her right eye (sorry she wiped It out before I could grab my camera) then she began whining about her nose having "boogers" and wanting them out. Tried to have her blow her nose but no boogers, she continued whining so since its Saturday I just closed her door and let her rest more.

Marcus,Jr is in great spirits this morning. Took his NADH with minimal resistance, and has been hopping and signing every since.

Check out my YouTube for the fun for the day.

At approximately 3:30 pm Marcus Jr had a seizure as we were driving to the grocery store. He urinated on himself and fell asleep in the backseat of the van.

I was able to get some video of the end and after, also got some pictures so be sure to check my YouTube page out for that.

He also had/has very bad gas so it looks like another clay bath is in order. Sometimes gas is like a "prequel" to a seizure, obviously his system is fighting something.

After we got home he went right to my bed and he laid down for about two hours, ate about three helpings of dinner plus an apple then asked to watch his show. After all of the excitement he seems to be pretty calm and just chill. Not sure if this is just that this seizure has taken it out of him or we're seeing some changes in behavior. Although, I think its the first I can always hope for the second.

Jai Lynn seems to be having a difficult time today processing information (maybe it's everyday and now because I'm journaling it, it just seems like its worse. I don't know .

*One Hour time elapse*

As I was writing the above portion at about 8:30 pm my son had another seizure lasting for 25 seconds. With a recovery time of under 5 minutes. Which is big. My husband says it looks like his seizure recovery times are getting smaller and the seizures aren't lasting as long. He will be receiving a clay bath tomorrow. Tonight before bed I made sure he had his zeolyte. It seems as if he was right back to normal after this episode as he fully participated in story time (sorry no video I was making bottles) and stayed clear of his room until his bed was made.

Jai Lynn had a great day overall, she also took her zeolyte before bed and she did well during story time (received all story time reports from my husband). She was very low key today but did a lot of question asking, and a lot of conversation initiation (well at least her version of it which is asking the same question over and over again whenever she sees or hears something that reminds her of a topic of interest today it was Halloween). She was very interested about what I was doing in the kitchen (but that has been one of her big interests as of late) and she was very helpful and understanding when Marcus, Jr was having his seizures. An overall big girl. She also told me today that she is going to be a veterinarian when she grows up.

So that was our day in a nutshell, will most likely have more video tomorrow of both kids will try to post what their academic work looks now also.

Until next time,

Wishing you Blessings and Recovery

The Fullers