Our Most Helpful Therapies!

Drew's recovery hasn't happened with a snap of my fingers!  It wasn't cheap.  It wasn't without more research than all of my years of college times like twenty.  It still requires more research because we still have gut issues.  But, we always said that we would spend every dime and do every single thing possible to make sure that we had tried every avenue.  We aren't perfect.  We've made mistakes along the way.  But, ultimately, as tough as it has been for everyone, we would do it all again to be where we are today.  All I ever prayed for was to hear his voice.  Boy, have we been blessed!  That voice is on a nonstop "play all" button all day long!  And, I love his curiousity and reasoning.  LOVE.

Fishing w/ Hubby

Then, there were the little things- like transitions.  You know, things that the rest of the world takes for granted.  Seriously, we had us some transition issues!  It was so hard to figure out in the beginning.  God, it was hard.  No wonder I have the worst dark circles under my eyes.  We don't take it for granted, in fact, just today while out shopping with Drew and Hubby, I reminded my husband how we used to have to bribe Drew with food the ENTIRE time we were out of the house in order to avoid the Lowe's incident.  Remember that?  Drew was also seriously terrified of public restrooms so that was always a major meltdown which is why we bought this.  If we did make it out of the house, we would only be able to go to one place because getting in and out of the car was it's own ordeal.  None of that is an issue anymore: we don't bring food, he can go to a public restroom, and even go to different places in one outing with no meltdowns.  Oh, how we have salivated over other families going here and there with there kids in tow like it's nothing.  So happy to not be dealing with that anymore.

   And, if you'll indulge me for a moment...  His teachers believe he is gifted.  Well, of course, I believe he is too; but a few years ago, I wasn't sure if others would see those gifts.  Now, what I hear when most people  meet him is,  "He is SO smart!"  And, I certainly wouldn't have guessed my 4 year old would be reading and doing multiplication! Even better though, his funny personality.  He gets humor!  There is just so much to these kids that just needs some help getting out!

Yesterday, Drew put cookie crumbs in his mouth for teeth..it really was funny. :)

And, I wouldn't have thought the following would be a good thing- but it is...  He is bad.  Bad in a very typical way.  i.e. He is not allowed to say the words "dumb" or "hate".  He'll still push my buttons though.  The other day, while driving home from school, I swore I heard him say "dumb".  Something about a toy being dumb. Then, he said it again and I saw him look for my reaction.  I confronted him.  And, of course, he said  that he didn't say it.   "I DIDN'T say dumb, Mom.  I didn't.  I said...um...double."  Good try.  

Anywhoo.  All those things listed above did not just go away on their own. HA. Despite the naysayer who may believe that he just grew out of those phases (Karma's a bitch, dude.), he didn't just grow out of them.  Therapy and treatment:  proactive, consistent, and determined actions.  Don't let that discourage you though.  Bottom line...it IS possible.  Recovery CAN happen.  Believe.  I'm not one of those always positive kind of people.  My mom always says, "just think positive."  That erks me.  But, the one thing that I always HAD to believe is that Drew would recover.  I focused on the other kids that were recovered or recovering.  I still do.  And, I truly hope that we can give back or pay it forward.  So, because I get a lot of emails with questions about different types of therapies we've used, I thought I'd pick our absolute must have therapies/treatments.  The ones that seriously made all the difference in the world.  It's tough to pick just a few because Lord knows, we've done alot.  And, I believe that many of them contributed; however, the following were instrumental!   Here is what I typically recommend to those who are just starting on our not so fun but do-able journey..

In the beginning, we could NOT have moved forward without the following:

ABA THERAPY! This was absolutely necessary for Drew.  He was non-verbal, non-communicative, receptive language was basically that of a 6-9 month old.  We needed HELP!  We needed something to help us teach Drew.  And, nothing was working.  Imagine just trying to get your child to imitate you clapping... hell, he didn't even know who I was much less want to copy me.  Yes, that is where we started.  Actually, probably even further behind than that.  And, ABA Therapy CAN help with getting TO your child.

DIET!  this is very scary for newbies and rightly so.  If I had to pick any diet (since there are quite a few), I would highly suggest the following: whole foods free of gluten, casien, soy.  Meat, veggies, fruits, brown rice.  If you can afford an IgG and/or IgE test, then you will have a better idea of what to include or remove from your childs diet.  Perhaps eggs are fine...perhaps flaxmeal is fine, and so on.  Nevertheless, stay FAR FAR away from dyes and preservatives!  That's why your best bet is natural meat, veggies, fruits, brown rice, and maybe potatoes but with a focus on veggies! And, friends, sugar is your enemy.  Our kids' guts are just destroyed and sugar is feeding those bad guys.  Try very hard to replace sugar...work towards it at least.

FISH OIL!  If I had to pick just ONE supplement for Drew, it would be fish oil.  And, for us, that particular fish oil would be Nordic Naturals ProEFA.  LOVE IT!  It WILL help with speech.  It is great for kids with apraxia.  And, it helps with cognition.  This supplement got the sounds going for Drew.  I would also add Nordic Naturals ProEPA.  We give 2 ProEFA and 1 ProEPA per day but you need to work up to that amount. More about why we use this here.

Moving on:
If you have the budget and are considering further options for your child, then by all means, PLEASE consider homeopathy!!!!

HOMEOPATHY!  This type of therapy/healing might just be your missing pieceS to your puzzle.  Homeopathy is miraculous.  Truly amazing.  It heals from within on all levels.  It is safe and natural and easy. And, to be clear, it was homeopathy that brought Drew back to us and continues to amaze us!!
 There are a few different kinds; but here is what I recommend:

Sequential homeopathy if your child is young with not alot of assaults (maybe just vaccines, minimal medications, and traumas).  Sequential homeopathy allowed Drew's body to rid itself of those vicious toxins caused by vaccines.  It was only after that that he really began to talk.  It was NOT without a price.  We used Homeopathy Center of Houston for a year with great results.  Drew did have major detox reactions and it cost us a fortune.  His biggest gains came from clearing his vaccines.  If you cannot afford Houston, then I would recommend either Rudi Verspoor (whom we were with for another year) from Hahnemann Center for Homeopathy or a CEASE practioner (although we do not have experience with CEASE).  Both clear vaccines, which I feel is extremely important! You can read about our sequential homeopathy experiences here.

OR, if you'd prefer a much easier route, and really need help on the emotional side, I highly recommend a trained classical homeopath.  Because we have already "cleared" Drew's timeline via sequential homeopathy, we decided to move on to classical to maybe work on some emotional things.  We use Dr. Angelica Lemke.  She works with Pierre Fontainne at the Homeopathic Services, Inc in NYC.  AWESOME!  Keep in mind, that we went this route after clearing vaccines.  It is not necessary but something I would recommend.  Classical homeopathy has helped Drew's emotional side/regulation; but he is still detoxing.  Your classical homeopath may be open to trying different nosodes to clear vaccines as well.  Typically, that is a bit different than classical homeopathy.  We are also working on clearing strep/PANDAS with Angelica.  Again, this route is a healing route but also an emotional healing route.  **And to note, I'm freaking out over how well it is helping with our PANDAS symptoms!

Relationship Development Intervention! If your child is communicating with you in any sort of way, I recommend RDI.  This is not the kind of therapy that someone else does for you.  RDI is a parental commitment.  Nothing good comes easy, right?  For social and emotional connecting, RDI has helped move Drew forward.  For us, RDI needed to come after ABA.  We needed ABA first; but some believe you can do RDI without having had ABA.  Not for us though.  We are now at a place that RDI can help. 

So, those are my faves.  They each can do BIG things for your child.   Granted, we have and are still doing other things.  If you're interested, I have a page with our protocol that I've updated along the way.

It is also important to note the following interventions...camel milk, chlorine free water, and methyl B-12 injections all make huge differences for Drew, as well.

Hope with music therapy

OH MY WORD!  Have you seen/heard this?  If not, you must!  If you have a non-verbal child, here is some fantastic hope for you and your child!  I LOVE this so much!!!!  Kyle is considered non-verbal as he can only say a few words but he sure can sing!  Apparently, after beginning music therapy, his mother and therapist discovered his amazing talent. Enjoy!!!


 

Type, Delete, Type, Delete, type, POST!

Many, many times, I start to type posts but can't finish them so I just delete them.  Sometimes, I'm not inspired.  Sometimes, I'm lazy.  Sometimes, I think that you don't want to read what I'm typing.  I wish that I could be a better blogger- the kind that just types something everyday.  Considering the title of my blog, I really should be doing that.  Truth is, despite the excuses listed above, the biggest one is a combo of tired and out of time.  You get that.

I've lurked on a blog about a mom with like 16 kids or something and she still makes the time to blog daily.  Then, there's this warrior mom who is a HUGE advocate, she's recovered her kid, runs parent groups, etc; yet is a full time attorney.  I guess my tired and out of time excuse just really falls into the lazy category.  sorry.

So, to go along with my laziness, I'm just going to post a video of Drew from last week.  It was a random day after school and soccer practice.  Typically, we drag ourselves home and I hurry to make him some lunch.  The poor kid is always starving and rightly so after those things.  This particular Wednesday was a rare one.  He was in pretty good spirits and tried to capture some of it on video.

I should warn you, he had started a weird tongue playing thing a few days prior.  Fortunately, it has tapered off now! Whew...cause it was driving me CRAZY! Enjoy! :)

Just the Going's On: PANDAS, Camel Milk, test results

Here is what is happening as of lately.  February, hurry up, please.

School is still going well. Thank God.  Drew knows the names of all the kids and sometimes talks about them at home.  He purposefully refuses to answer the, "what did you do at school" questions though.  So, I have to skillfully pry those answers out of him.  His RDI therapist and I have talked about it and we do not think it's because he cannot answer them.  This child remembers everything and can tell you details about events.  It's plain ol' stubborn rebellion.  Or defiance.  He is behaving although I believe his is arguing back with his teacher probably more than most kids.

Camel Milk- Well, we got new milk at the end of January that came from a different source.  Rumor has it that the milk had actually been frozen for a year.  Do you think I told that to Drew? Heck, no.  Did he notice a difference?  Heck, yea.  He hated it.  It had a different consistency, was hard to defrost, and clearly tasted different.  I was barely getting one ounce a day in him for awhile; and then, I decided to take him off that milk before he went on complete strike.  I told him that I would try to order fresh milk as soon as the camel's were ready.  So, he had been off camel milk for about 2 weeks...  Fresh milk arrived yesterday.  Drew said, "Mmmm, much better.  it's perfect."  Still, I think he has bad memories of the old milk or just isn't as in to it anymore.  I gave him 3 oz this morning and he wasn't all over it like he used to be.  :(  Anyway, I'm anxious to see if we see any changes in the next week or so.  Hopefully, it will help with oxalates again and mood.  Perhaps, it will help with yeast and bacteria too....which leads me to...

Did I tell you that I got his OAT and CDSA results back?  No presence of yeast or clostridia.  Major, major hooray.  Until, I read further that he now has klebsiella, citrobacter (two kinds) at 4+, and strep.  (Strep- surprise, surprise).  We have some things to address metabolically and I have an appointment with Dr. Woeller tonight. 

We have allowed Drew to have some sugar containing foods due to the Valentines Day events...

I can't help it, I feel sorry for him.  He also has had a mound of fruit.  We're already paying the price: red cheeks, climbing the furniture, somewhat crashy, hyper, and the give away- red ring around butt.  Let's be clear, the amount of actual sugar that he consumed was so tiny, miniscule; but, as always, he reacts.  **Sidenote.  The other day, Drew was outside playing with our neighbor's girls.  They invited him in for a tea party.  It was 10 am and they were going inside to have tea and cupcakes.  Must be nice.  We had to decline...fortunately, we had plans for Drew so he wasn't upset.  Still.  Must be nice.***

Moving on.

PANDAS.  Oh yes, my favorite bear is back.  We were doing the strep nosode for a couple weeks, remember?  Pretty good results, tic disappeared, great behavior, new things, etc.  Then, his immune system probably kicked up and somewhere during all that his oxalates kicked up too.  Oh, and that's about when the camel milk ran out.  He also was showing obvious detoxing signs...good but bad with the oxalates.  So, I opted to stop the strep nosode.  And, then, every kid in his class got sick.  And then, so did Drew.  I thought at first it was detox related but it wasn't.  he had the virus they all had.  And, that is when my bear friend decided to come back and visit.  I thought I heard a throat clearing.  Then, I thought he was acting a bit more rigid than usual.  Then, I was sure he was throat clearing...like 20 times a day.  And, instead of having to have things a certain way...which is he typical rigid PANDAS behavior, he is now adament to have things different than how I have them.  Period.  If I say 3, he says 2.  If I say blue, he says red.  You know.  We've been here before.

And, if I needed anymore proof about that d@mn bear....  now, I have strep throat.  Of course, I do.

So, Februrary has been fun.  On the upside, he did start soccer and is doing pretty good.  I think Hubby is finally catching on to RDI which is very helpful.  Drew's referencing is getting so awesome.  We've got the new milk now, I've got more strep nosode that we've already started dosing and seeing things with, ummmm, and well, that's all I got for now.  OOOOOHHHHHHH WAIT... I do have more...

His school had the local university's speech-language peeps come out to do free speech and hearing tests on the kids.  Did I tell you this?  I didn't want to sign Drew up for it because I'm trying to keep the school a bit in the dark.  It would have been more weird, though, had I not signed him up.  So I did.  The results came back this morning.

Drumroll please....




He passed!!!!!! 
There were places for them to check mild concern or possible concern, definite concern, failed, etc.  Nope, he PASSED!  He passed a speech and language test!  Who'duh thunk it just a few years ago????  Passed! Child presents as age appropriate for speech-language.  (Oh, hearing too!)

I don't like roller coasters

I remember the first time I rode a roller coaster...sixth grade trip to Busch Gardens.  I also remember how no one warned me to keep my head down while doing a loop.  OUCH whiplash.  After that though, I was hooked.  LOVED roller coasters.

It wasn't until after Hubby and I were married that my preference changed.  We both took a day off from work and went to Busch Gardens.  We were about to take off on one of those rides where your feet dangle because the seats are actually hanging from the track.  Yes, I was nervous; but nothing compared to the feeling at the highest point of the track.  We just dangled, hanging for what seemed like three minutes.  It was just enough time for me to think about how many things could go wrong... In those moments, I think I prayed like no other time, bargained so many things, and felt my stomach come up and out of my mouth.

I haven't technically rode on a roller coaster since that day, about seven years ago.  If that is so, why is it that I also feel like I haven't been OFF of a roller coaster in the past four years?  Praying, bargaining, feeling my stomach come up and out of my mouth.  Nervous, happy, scared, relieved, scared, excited, happy, nervous, etc. Oh wait, I can probably throw in a whiplash here and there too.

Honestly, I'm not sure if it will ever end.  The ride, that is.  We get over one hump just in time to start treading up the next one.  We speed up on our way down and then slowly have to wait to get back to the top again. 

Overall, life is much better.   But, I can't say that this ride has been fun.

Listen to the Canaries in Le Roy, NY

Hmmm.... Angry anyone? SOMETHING happened to them. Maybe it wasn't vaccines; but I highly doubt that these girls all were experiencing such stress that the result was Tourette's like symptoms. Sorry. Ain't buying it. I really hope that they are able to receive treatment to improve their condition. How frightening.

Interesting or obvious possible causes:
Vaccines
Environmental toxins (read the article...wow)
PANDAS
Stress
All of the above?


Listen to the Canaries in Le Roy, NY

Low Oxalate Teddy Graham Crackers

Drew's preschool is having a Teddy Bear Picnic on Monday. (They are also having a Teddy Bear Clinic where each child brings their bear or lovey and then a nurse from the local hospital comes in to let them do a well checkup on their bear- complete with pretend vaccines....)  As annoyed as it makes me, I am going to let Drew participate.  Also, it's not like shots are completely foreign to him- he still gets the MB-12 shots regularly.

Anywhoo, his teacher told me that at the picnic, they will be giving out gummy bears and teddy graham crackers.  She really wants Drew to be able to particpate as closely as possible (unlike his previous school who actually discouraged me from trying to bring in substutions stating that, "he seems fine just having his regular fruit"...while all the other kids have cupcakes.)  This teacher has compassion.  And, I've tried to explain that he is very used to not having the same things as the other kids; but that I'm always willing to bring something as closely related as possible.  Sometimes though...it's kind of hard to do that.  But, bless her for thinking of him.

So.  For the Gummy Bears and Teddy Graham crackers.  I'm going to go with the same gummy bears that I gave him for Halloween.  Although they DO have sugar in them, he didn't seem to react last time.  I'm only going to allow him one pack and I'm going to try desperately not to eat the other 23 packs in the box. 

And for the teddy bear crackers...well, I attempted something tonight.  I'm not necessarily suggesting you try this at home.  I will say that Drew will eat these and like them; but I cannot guarantee that any other child would not spit them out.  In case you have a kiddo who might eat your arm if allowed, and you're interested in the recipe, it's super easy (and low oxalate!)

1/2 C pumpkin seed butter
1/2 C potato starch (must be starch not flour to be low oxalate)
1/2 C water
1 TBLP oil
1/2 tsp baking powder (probably optional)
**I didn't use this but I highly recommend some sort of sweetener- xylitol, honey, sugar, coconut crystals, agave, something.
**I also suggest using maybe a tiny dash of cinnamon or nutmeg.  I did not.

I mixed all the ingredients together.  Then, rolled them out on parchment paper.  I cut them using my super cute little teddy bear cookie cutter.  And baked them on 375 for approx 13 minutes.