Hello everyone,

My name is Jake and I've talked to bunches of you over the past year or so :wave: *my Mommy has anyway - as I can't type very well* and you have all really helped Mommy get a GRIP on the whole E business... She not such a spasz any more :p

Here's my question of the day~

I am a Keto kid now. On a special diet for kids with E. Everything seems to be going pretty well. Although I HATE when the little bowl of food I get at meals seems to empty faster then I would like... and boy do I tell them about it... But, that's not the issue for now! And what's up with the cotten balls in my diapers now, the little strings gets all wrapped around, well... never mind...

Mommy and Daddy are lowering meds in an effort to take me off the drugs. I have dropped my Trileptol by half and my Lamictal by a thrid *I'm pretty good with math for no older then I am...* lol ;) This is over a seven week period.

Some of the crazy things I did when I was littler are getting to be a real BIG deal and I can't seem to make it stop. I have SID or Sensory Intergration Dysfunction as well as E! So, I want to touch any thing and EVERY thing! ALL THE TIME! I run my hands on the walls, on the floor, on the bed, on the plants (if I can get to them - Mommy keeps that room gated most the time) and I love peoples hands and fingers. But, here's the kicker - I DON"T want to be touched on anyones terms but my own!!! :nono:

I also want to turn in circles when I'm sleepy. I will walk in a circle until I fall down or bump off the walls from the dizzies ! The only thing that seems to STOP this junk is being placed in my bed. I guess I feel safer there. The room is quiet, the lights not so bright and I have my huggy toys in there to touch. :yawn:

Has anyone had withdraw from anticonvalsents? Am I doing these things more because my brain is more awake and I'm not sure what I'm supposed to be doing - like pushing trucks or climbing on stuff! I've been on these silly drugs since I was 10 mths old and now I'm 2 and 1/2. So there is a whole world that I really didn't know was out there... :bouncing: I still can't talk and the Drs are no help right now either. They told Mommy and Daddy that they are really smart and could work the med junk out on their own unless I start to seize... SO far I'm not seizing... But I know that they worry about Autism and this being a form of stemming... even if Dr Winesett is saying no way!

Should Mommy and Daddy slow down on the med reduction - or push it threw faster to see if they can help me get to the other side of this to see what happens. Do any of you not know what to do with your self without drugs? How fast do they leave your body? I think I feel better, I look better anyway, but sometimes I feel really lost in this great big world!!!

OK, more then one question... but all part of the same ;)

Thanks guys, you are all the bestest a little guy could hope for!

Love and great BIG HUGS to everyone!

Jake and Mommy

You know Jake, it's odd you mentioned autism because the signs you were talking about reminded me of my son at your age (I can play this game too..LOL). Some of the things you are doing could be considered normal to SOME doctors for a child your age (except the speech thing). My oldest son didn't talk at your age either and did speech therapy (at age 13.5 he's JUST been released) but in all honesty I'm not sure that it works, I think that's something that Mommy will have to work with you on eventually. As far as your E medicines I guess I personally would need more information since I haven't been here very long or talked to your mommy. I would wonder what the doctors reasons for you have seizures were. I mean, have they seen anything on an MRI or anything to indicate where the problem lies?

:wave: well hello there Jake,

it has been awhile since we have had the chance to hear from you ;). sorry to hear you have so many questions. i may not be able to help you very much with them but just wanted to say hello and i have been thinking about you a lot lately. have even asked you mom about you from time to time. i hope you find out what your looking for and staying healthy as well as siezure free too. thats the best i have heard form you in a while :bouncing: from the sounds of it you have been keeping mommy busy. :D you take care of yourself and dont be such a stranger ok. :) keep up the good work too!



lisa,

i love those letters from jake. they always seem to lift me up because we are "hearing" ;) it from a little one's piont of view. its been awhile but still welcoming. as i told jake i hope you find something out, and it seems the keto diet is helping him a lot huh? take care of yourself and dont be such a stranger ok. have a good one and hope to see you on here soon.

:wave: Hi Jennifer and DalesGirl,

:bouncing: Yep I'm keeping Mommy and Daddy going in circles right behind me LOL :bouncing:

My new diet is working WONDERS on the seizures, but I hate when the foods all gone. The guy that lives next to us is a cop, but I can't get him to do anything about it... He keeps saying it's for my own good and he wont give me ice creams either :( Did you know he has a doggy... I didn't either until a couple weeks ago. It's like I didn't even see it before the diet, and now I do! Mommy says she's a baby lab, I didn't know labs were doggies, I only thought labs were for blood stuff ;) It's going to be bigger then me before to long, I can't wait to try and ride it.

Some of the good things are that I pay attention to things better now. I can sit at my table and I drawed Daddy a picture and did you know I have puzzles and little cars that make noise? Other things I didn't see until the diet!

I'm still not talking real words, but I try and say dadadee, mam mam mee, and I say gu bouy when I do good things and every body claps for me. I can find my paccy all by myself, and will walk to the highchair when Mommy says it's time to eat! And boy am I trying to jump, but I can only get on leg and foot up at a time, and I can get ALL my toys out now... :eek: I couldn't do any of that 2 mnths ago! OH and I say GET and push other peoples hands away when I don't want them touching me...

Daddy says we should stop speech theropy for a little bit and focus on my PT. He found a new PT lady that has horses and more doggies out on a great big farm. I go for my first ride Wed. I sure wish Mommy could come with us... We went to see the Kim lady this weekend and Mommy and Daddy really liked what they saw. I think I'll end up crying because she's going to want to touch my hands and face and you know I don't like that - it's yucky unless I want to touch you!! :D

Mommy wants to talk for a minute OK!! BYE-BYE :wave:

~~~~~~~~~~~~~~~

Jake is doing very well on the keto diet. I hate that he doesn't seem full when the foods all gone, but he is gaining weight - which is a Keto no-no. But we're getting by with it. There are things that hubby and I know we are doing wrong, giving more food is one of them. But, as long as he's not seizing we don't see an issue.

The neuros are telling us to do the med drop at Jake's pace, to take our ques from him. When we started the Lamictol last summer was when we started to see some of the strange behavior things - really SID (almost OCD) to the max. As we reached a balance with the Lamictol and Trileptal it stopped for the most part, but he also lost his words for the second time around the same time frame.

He has started to sleep thru the night. Daddy got his first full nights sleep in 2.5 years last week. He is a SAHD and will get up with Jake during the night since I have to get up at 6AM to start my day. He is a wonderful man and we (the kids and I) are truly blessed!

The neuro who saw Jake in the hospital at 10mths is standing behind the fact that he did NOT see Autistic behavior in Jake prior to starting meds. Says that we should put the thought out of our minds until we get him off meds for some time. He feels that he had a huge disruption in the learning process due to the HIGH levels of drugs we had to push to to get seizure control. That what we are seeing are side effects *hopefully*. Got to love that little disclaimer at the end.

Dalesgirl, to answer your question: we have never been able to find a cause for his seizures and he is considered Globally Delayed! I have a 15 yr old daughter with E as well, but she was pretty easy to control once we figured out what we were dealing with. We treated her for ADD for 4 years before she had a *Hollywood Seizure* as she calls it (grand mal). They both have Complex Partials of the Left Tempral Lobe - the center of lanuage and executive reasoning or cognitive function depending on who you are talking to. Jenny also had speech issues and had SP for several years, she also had a visual tracking disorder when she learned to read. Both have been taken care of with lots of love, time and money!

Jennifer, trust me when I say that you and the gang here have never left my thoughts and prayers even if it's days and weeks between posts. You are so much my family!!!

Need to scoot! Hugs to all,

Love and light

Lisa and kids

Jake,

It sounds like you are doing well. Hope you have fun on your horse ride. It sounds like fun! I'm sure Daddy and the therapist will be right there so there's no need to be scared. As far as that cop goes, maybe he's right, at least for now. Give him the benefit of the doubt but if after a while you don't get any satisfaction, just kick him in his knee and tell him you want that ice cream!

I'm going to talk to mom a little bit now about you. It might get boring so while we talk why not go and pull all your toys out of your toy box and have fun!!



Hey mom,

I think I'm going to have to disagree with his doctor as far as the autism thing goes. I think at those small ages they don't look for those things. I know that in some children they can detect them because sometimes a baby's head grows abnormally and it causes them to run tests but even then sometimes it takes a long time to diagnose. My son was sick when he was born and spent a week in the hospital. They told me that they could give him a shot and he wouldnt' cry but if he had a messy diaper he was ready to climb out and beat the crap out of someone. At the time we laughed about it not thinking anything. As he grew older we noticed other situations especially dealing with him not experiencing pain. As with any child he began to know when he was 'supposed' to cry and would do so for the attention. Again we just thought he was a tough little boy. We started having some things where he just couldn't get things like counting and colors and then had a lot of behavior problems. Every time we went to the doctor I expressed things and every time I left I felt like a failure as a mom because this doctor just wasn't getting it. At three I finally told them I wasn't taking it anymore. At the time the MOST I expected was an ADHD diagnosis. I had taken him off all the 'myth' foods and it hadn't worked. They sent him to a shrink(would spell it out but it's one of them hard words..LOL) and that's when he was diagnosed with Pervasive developmental disorder, Obsessive complusive, Oppositional Defiancy, and Aspberger's. I finally had answers and his little quirks were explained.

My oldest boy is the one who went through speech and really he did better when he took a break from it then when he went. He talked like a 1 year old at almost 3 and made noises or sounds for words. The therapist would tell me flat out... "we can't MAKE him talk". They did nothing more then I did! He's almost 14 now and has gone through therapy in school since kindergarten. Every year I weighed the pros and cons of it. He's gotten to the point that youjust have to get him to slow down sometimes to understand him.

As far as the seizures go since there's no evidence say on an MRI and he's doing better then yeah I'd try to wing him off of them. My husband is on seizure meds but we plan to keep him on them for the rest of his life. His was caused by hitting his head and scar tissue so the risk is ALWAYS there. Sounds like you're doing all the right things when it comes to lowering it and checking it.

Hi Jakey & Lisa,

Jake sounds like he has been seeing things in a whole new light! I'm happy to hear of the progress with the seizures and Keto diet! It must be great to see the changes.

I have mixed thoughts on the autism thing. It does sound like Jake may have some signs, but I agree that if he has been on seizure meds for awhile and at high doses, it's hard to say. I know what long termhigh dose use of AEDs can do to kids. I guess I would agree with waiting a little longer, after weaning off the meds. But the speech issue coupled with the sensory disorder "sound like" signs of autism, doesn't mean anything until you test. You know I'm not a doctor, just going by some experiences I had with students I use to work with in the schools. My cousin is also a special needs head teacher for a WI school district and has worked with two autistic boys (off school time) for nearly 10 years. She is soooooooooooo good with them! She was originally going to be a speech pathologist, which is how she originally connected with these two families (to work with the boys on their speech). One day she felt a special calling, after spending a day with one of the boys and his family...the rest is history. It was exactly what she was meant to do and she is thrilled with every advancement "her kids" make. Her eyes just sparkle!

Keep going ahead with your plans...as we all say here, WE know our kids best and do play a huge role in what IS best for them. We are their advocates.

Thanks for your prayers and Katie and I continue to pray for Jake, Jenny, Gage, Bonnie and Meg. Rays of sunshine in all of our lives... :angel:

Vicki

Hey you... Its so good to hear from the 'two' of you.. been missin you!!! I'm glad Jake is having good seizure control... but I don't have much insight on the other stuff. I've been on topamax for three and half months at this dose amount and I just now feel like my old self. All the side effects have finally gone away and things are clear again, but I'm not sure if that would pertain to Jake's situation!!! But maybe you are on to something, he just doesn't know how to act without being so drugged up and always seizing????? I'm guessing sweetie, I so wish I could answer this for you!!

How was his horse ride? Has he gone swimming?

Take care sweetie and take a breathe for yourself!!! :wave:
Lisa T

Hey, Lisa T is right with that thought...he doesn't know how to be, with having been on the meds and seizing all of the time. The same may hold true for Katie as well. Once she is removed from meds (hopefully and not for awhile yet), it may be a whole new world for her to experience.

Phoebe mentions the "lifting" of the medication cloud, after her surgery, in one of her posts. These are brain alterring drugs we are talking about...anything is possible!

Vicki

ok jakey baby boy this is ur sissy talking to u not mommy (but mommy tell him this ok)not ne one else but whoever wants to read it is welcome to so here it goes

ok baby i no that u still cant talk and it can be hard for u i want u to talk i feel that what ever mommy and ralphy r doing its best for u and i support them 100% how ever fast they want to take u off u meds is compleatly up to them but if they r moving to fast just try to give them sometime of warning please it, i no that it would make them feel better and it would make u feel better too ok, i love u very very much

i no that there r some ?'s about other things that they think that u might have and it not only worries them but it also worries me i want u to be on of the healthyest brightest baby boys out there i really do

so jsut please just try and get better please and ill be home in 38 or 39 days ok i miss u baby and i love u bunches
(ps i have ur bay blanky) :) u still be my litle baby angle :angel: when i get home love ur big sissy

Hi everyone,

Thank you for sharing your thoughts and ideas on this one. I guess we take it one day at a time don't we.

The drs wont discuss having him tested until we are off the drugs. We are not working with myth foods as Dalesgirl put it, although those are removed by default with the keto diet - no wheat, no sugar and we try to do mostly organic foods - just in case ;) The diet we are usings comes out of Johns Hopkins and has been used for nearly 100 years to treat seizures in children. It's a controlled form of fasting, we are providing his body with the fats to burn in the form of food causing an alteration in his brain chemstry by the production of keatones. Pretty scarry when I say that out loud, but it's just what we were doing with the drugs - altering his brain chemisrty...

I guess the neuros are playing it safe by taking a wait and see approach! And I can see their thinking, at one point Jake was on 4 drugs at one time and still no control. The Dilantin affected his liver and blood cell counts (caught very early and took him off within days) and he grew tons of body hair - all have since corrected themselves without further intervention since going off it. I feel that one of the drugs affected his vision at around the 13 - 18 mth age, for a long time he would reach for objects and miss them by a mile - after awhile he just stopped reaching, one of the drugs affects balance and the drs all have stated they wished they could have seen him walk prior to the drug to have something to judge from, but since he learned to walk while on it, :confused: and yet another can cause compalsive behaviors in some people - I know I would find it hard to learn and be *normal* with all that going on - who's to say?

So, I go back and forth with the breeze - One day I'm sure it's the drugs and the next I'm sure it's Autism. Looking at one of the tests for Autism, I see 4 or 5 areas but they are in the second and third group.

Group 2: Qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

Group 3: Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

So I guess, given all of that we will follow the neuros on this one and keep dropping the drugs and working with him as we have, and leave that answer for a later date...

It's hard to take the wait and see approach, but at the same time I don't want him labled and have it splashed all over his files if it does turn out to be the drugs.

Love and light,

Lisa and kids

I TOTALLY agree...hard to wait, but it's the right thing to do.

AND, one thing/day at a time...his body has other important things to work on! :)

Vicki

Hi Lisa

I am glad Jake is doing better. The meds do make a difference. As I mentioned before Bonnie will get very blurry on the med. When she first takes it she can barely see. One time at school she wanted to check out because she couldn't see and the substitute teacher had to write the check out slip for her. The less E meds the better as long as he's not having seizures. I had asked Bonnie's doc about the diet and she said yes it would help, but will she follow it. Bonnie said no. The doc understood how hard it is for a child to follow it properly. I TRY to get Bonnie to not eat as much sugar and breads but hey I can't even get her to eat peanuts!
Every time I think of Bonnie having the GM's I start to cry. I can not imagine having her flat line at 10 months.
Keep fighting for Jake, I agree you don't want him mislabled and not get the right treatment if it is the drugs.
Debbie