Sometimes I feel like I'm just one human and there's no way to research, obtain, memorize, and hold up to all that I need to for the sake of our son. He has so many diagnosis' (dx's); Neurofibromatosis (NF1), Autism, ADHD, Restless Leg Syndrome, Auditory Processing Disorder, Periodic Limb Movement Disorder, Mild Hearing Loss, Sensory Processing Disorder, Receptive and Expressive Language Disorder. He's on these medications as of right now (removed 3 RX's in the two months which was Zyrtec, Melatonin and Prilosec, but have been thru many more including chemo); Focalin (3 daily), Clonidine (4), Mirapex (1), Miralax (3), Gabapentin (1), Ambilify (1/2).
Are you tired yet? I am. But I got to tell you...I'm writing this so maybe just maybe one more family doesn't have to do this terrible journey we've been on. I'm hoping I'm able to shed some light or be the transmitter of a light bulb moment.
Without going thru each one of the dx's in this blog...uhm, ain't (I know it's not a word) nobody got time for that; I'm going to focus this part on our first new adventure in getting healthy. The diagnosis' we are starting with here is Restless Leg Syndrome and Periodic Limb Movement Disorder. The reason I'm starting here is because if a person cannot get good quality REM sleep; there is going to be problems with behaviors that can mimic ADHD, Autism, some call being a brat syndrome, whatever. None of it's pretty if one cannot sleep.
Is the diagnosis correct?...you must question that. This is just one link/site of hundreds that are an awesome resource for information; I'm not promoting or discrediting the sites, fyi. I'm not on here to gain any money, approval, or anything of the sorts.
You must be the advocate for yourself and your family.
I'm not even going to go into the story from birth up until the diagnosis as that is another blog for another time. So at Koda's IEP in January this year, the teachers had noted the decrease in focus. I said, Ok...well, we've got to go to the sleep clinic in KC then. I had already learned that daytime behaviors can be a result of not getting proper sleep. (Now mind you I have read many comments about upset parents who say; my kid sleeps! Do they really, do you know for sure they are getting REM sleep, are they tossing allover the bed, are they complaining their legs hurt, are uncomfortable, snoring or something else? I just ask that you make sure...the only assured answer is through a sleep study) I also told them the medicine dr. would not increase or change any "adhd/autism" focus medications to help with focus until we do make sure that he's getting proper sleep. So because I already know this...I call to make the appointment.
In the mean time I found out some things about sugar, insulin, and the food industry which made me livid (see my previous post on my new finds
here). Mama Bear kicked in and changed everything and Papa Bear proudly supports the new life. Also while waiting...I was finished at my temporary job the first of February; which gave me time to research even more. I may not have a paycheck physically coming in, but I'm saving $ with this new lifestyle and also our lives which is priceless.
Appointment time: I just plainly start off with school's concerns and the lack of sleep Koda had seemed to be getting (he was more restless again). I also shared my concern about how I also know now since Papa Bear was also diagnosed with RLS that the meds to treat it are the type you become addicted to and need more for them to work. Ughhh! I told the dr. I don't want to increase the dose, I want labs done to find deficiencies in vital nutrients. I knew Iron deficiency was one that could be the culprit of RLS. She was happy and agreed, as she didn't like the med but it was our only option at the time (uhm no! Now I know that labs are the first thing that should happen to find deficiencies)...now mind you Mirapex is not approved by the FDA for children (not that any of prescription shouldn't be questioned if it harms more than it helps) so she gladly was ready to help decrease Koda off that med then Gabapentin is next.
Her note was this...It's going to get worse before it gets better. :( The behaviors will increase. The leg pains, cramping, bugs running around will get worse. (So our 10 almost 11 year old gets to go through withdrawals like that of a drug/prescription addict). Momma Bear wants to clean him out, but must admit to the guilt that I feel for having allowed this to happen! He's been on medication since he was 3, it's time for us to get a baseline again.
So we go for labs...the results; Vitamin D deficient (most Americans are), Iron deficient, Calcium, Potassium, and.... I asked for a check on magnesium...guess what? She couldn't do that lab because there's not enough scientific evidence showing in the "medical files" that it has anything to do with sleep. Ok, here's where I grin because I know she only follows exact protocols within her practice. I shared with her that I had a link to "scientific notes" through the National Institute of Health. That got her attention and I got the labs for that too.
What I found on my own was amazing through this
website about Magnesium that everyone needs to read. I love how in this journey one thing then leads to another discovery...so I found out that not only does Magnesium or the lack there of cause cramps, tremors, and constipation (each Koda has) it coincides with Calcium deficiency and that the muscles in our body releases that when squeezed. Well guess what? Koda begs for pressure especially at night...he wants squeezed. Hmmm, coincidence I think not; it's his body asking for calcium.
After researching these deficiencies of his...I found more information that just flat makes sense. It is clearly a lack of proper nutrition (and it's not because the boy doesn't eat or that he doesn't choose good foods; loves broccoli, greens, fruit, meat). His body can't absorb the nutrition properly when his gut and kidneys are damaged from the prescription drugs. So we are are on a journey to clean out the gut. I so should've listened to our wholeness chiropractor back when he was 3; he diagnosed Koda with Leaky Gut. I believe him now. I started the healthy life back then but the lies of the world that we can trust our government, our food supply, our doctors, etc and in the moment was so much cheaper (lie...long term affects on health and lifestyle) to use prescriptions because wholeness chiropractors are not cheap and society said; this wholeness, holistic, organic, approach was "crazy extremists"...well if that's the case we're jumping on that band wagon. Call me CRAZY!
I feel like Maury...and, that was a lie! I just have repeatedly said that over and over since I decided to research and advocate for more than just IEP's, therapy, etc. We want to thrive not just survive. I know without a shadow of a doubt. With great sleep, a healthy gut, exercise, organic clean nutrition (be careful if you garden this year; make sure your seeds are organic as well), and supplements our bodies will heal themselves. We are fearfully and wonderfully made. :)
He will slowly go off the prescriptions as we add in all the vitamins, etc. Now I will say, I also have added in therapeutic essential oils into this because I've seen them work. My husband even has had great results. We are shopping for only the best of the brands of vitamins so we can get the best absorption rate; no preservatives, no gmo's, organic, clean vitamins. READ the ingredients and labels please!!! Iron must be given w/ Vitamin C (organic orange juice is what we decided) for it to absorb correctly. See it's not just as easy to go to Walmart and pick a vitamin. Dang I wouldn't buy a vitamin from Walmart...they are full of sugar (whole other issue) and other not very good things. You are lucky if you absorb 1% of those. Don't waste your money. Until next time...blessings to you.
Please comment here and let me know you're reading, share, and most of all I pray you take something beneficial away from our journey. Embrace some joy! Here's to your health! Hugs!!
~Yvonne
Out the door we went, and we all ate horrible...back to the original processed foods, restaurants, etc to meet the demands of our stomach. Sure we could've stopped and got the better choices from a store, but we were so limited on time & funds that made it not possible. We had to eat CHEAP...but we didn't fall for McDonalds whoot whoot!! See I'm using an excuse...what I thought was cheap; now we're dealing with abdominal cramping, digestive issues, gained weight, and the lil' guy's behaviors are off the chart gain. Those side effects don't come cheap either...I''m a failure was the first thought! No I'm not...we fell off the track and now we have to get back on. It is very clear to me and this experience is a confirmation that nutrition, food types and choices make all the difference in the world.
