Migraine and Legos

Thomas has continued to have a headache and varying degrees of dizziness the past few days and today started out much the same.  His dizziness was a little less in the morning than it had been and his headache was also a bit improved by mid morning. 

My brother, Uncle Greggy, is letting Thomas borrow his childhood Lego sets to build.  There's castles, pirates ships and so much more.  Its so nice for Thomas to have a sit down activity that he enjoys to do.  Cassie and Chris have been helping to sort out some of the sets.

Around 3:15 p.m. I asked him how he was and he said he was okay.  He was talking and showing me Legos he had built.  I then decided to do a quick vacuum.  As I was vacuuming, I saw him come to the kitchen sink with a wash cloth and get it wet.  I asked him if that was for his head and he said "yes".  I finished vacuuming and found him in his room in his bed with the cloth on his head.

I asked him what was going on, he rolled onto his stomach and said his head hurt REALLY bad.  I asked him when he'd last eaten and he didn't know just that he had had yogurt.  I asked if he'd like a grilled cheese and he said okay.  I quick made one and brought it to him.  He took one bite and said "I think I'm going to be sick".  I had him take his shirt off and I rubbed coconut oil with deep relief all over his back, legs and feet.  He calmed down and I kept rubbing.  Joe came home from Mackenzie's lacrosse and we got some Tylenol.  It was very hard to get him up enough to suck down the Tylenol.  He said it hurt way to much to lift his head.  I continued rubbing his back and a few minutes later he was fast asleep snoring.  From what I've read about childhood migraines this one fit the bill.  His headache has never been like that before with the sudden onset and nausea.  Up to this point, even though the ER doctors on Mother's day had said it might be migraines, I never thought he'd had a migraine.  Now I am pretty sure he did, but what caused it?  He's had headaches for years in varying intensity.  This one was AWFUL!  I NEVER EVER EVER want to see him like that.  It was super scary and I felt awful that he was in such pain.  I am wondering if it has something to do with the new supplements from the Naturopath.  I am hoping it is a good something and maybe somehow in all this craziness it is actually working stuff out of his system.

He slept for about an hour.  When he woke up he didn't even know he'd been asleep.  He said he wondered how his headache had gone from a #9 to a #2.  He promptly started playing Legos in the living room like nothing had happened.  He was still to nauseous to eat the dinner I planned.  So I made him some Gluten Free Pancakes instead and he enjoyed those.

 
I am praying that we are making progress. Its going to be awhile before we feel comfortable planning anything that involves his participation, which is a bummer as far a summer vacations go.  We had a lot of neat trips planned around some lacrosse tournaments that Chris is participating in so I am guessing we will be doing some rearranging.  I can't wait to get my baby back; happy and healthy all the time!!

Naturopath May 27, 2015

I came out from the shower this morning and found Thomas on the floor under a blanket in our living room.  I thought he was just snuggling up but soon realized he was that way because once again he was too dizzy to stand and his head was hurting more.

Our oil lady suggested not doing any oils today and letting the ones we'd been using soak into his system.  She said to try diffusing peppermint.  It didn't help.  I also noticed some darkening above his lip under his nose.  I have no idea what this would be from.  It doesn't feel like dry skin.

Around noon we left for our appointment at Northern Nutrition in Shipshewana, Indiana.  Thomas wanted to go first.  We all had a combined family appointment.  First the doctor had Thomas put a finger in a little clip on machine on his finger.  It measured pulse and the strength of his heart beat.  The naturopath looked at me and asked if his doctors had mentioned his heart beat.  I said "no, why?".  He said its very unsteady and weak.  It was supposed to make the lights go up to 5 and then down and then back up to 5 and so on but it would only go to like 2 and then down and then 4 and down etc...  He suggested 100 mg of CoQ10 two times a day for that.  Then he did the finger poke on Thomas and put a drop of blood on a slide.  He put the slide under the microscope and then projected it through a computer monitor for all of us to see. It was neat to see all the cells.  There was a little worm shaped parasite; which he said was bacteria borellia that affects the nervous system.  His white cells looked good.  It was suggested that he take a supplement called mono-immune plus citracital (grape fruit seed extract) and Samisato.  He was also mineral anemic so we bought a mineral drink for that.  The Samisato and Citacital are to be used for 10 weeks and the others until our follow-up appointment on September 2nd.

I want to be hopeful.  I want to believe that this will "fix" him.  I want it to work.  But I am so doubtful.  We've been let down too many times to believe in anything without physical proof.  We've spent a lot of money on this round of supplements so I guess only time will tell. I'm tired.  Joe's tired.  Our other children are tired.  It's hard, it's emotionally exhausting to watch your child/sibling suffer. 

Birthday Party May 24-26

Sunday was "Party Day"!  We did not go to church even though he woke up feeling pretty good with only a barely ratable headache and dizziness.  We were scared to have to much activity prior to the party for fear he'd back slide.  Up to late last week, we were pretty sure we would have to cancel his party.  We tried talking to Thomas about postponing it but he would become so upset that we basically abandoned the idea of rescheduling and decided to do whatever he could for the party.  We planned activities that didn't involve running or rapid movement.  His siblings helped him design an RC car course in the backyard to drive the car through.  We set up ladder ball and bean bag toss.  Everyone helped fill 100 water balloons for a toss.  At 1:30, five of his friends came to celebrate with him.  Everything went well and he was happy to see his friends!  At 3 p.m. the friends went home and the grandparents, aunts, uncles and God parents came to celebrate. 

Thomas has wanted a dirt bike since he was three years old.  Back in January, I found a Razor electric one marked way down at Meijer and we decided to get it and hide it for his birthday.  Everyone gave him something to go with it like the helmet, goggles and gloves.  He was excited and rode it a little bit but he was wore out and voluntarily got off of it after a short ride.  He asked to be allowed to go inside and build his new Legos.   Around 4:30 p.m he said his headache was a number 3.  I put Deep Relief on his neck and by 7:30 p.m. he said it was back down to 1/4.

I was so nervous to get up Monday morning.  I didn't think I could handle seeing him laying on the floor in pain and too dizzy to walk.  We so feared that the party would set him back.  Joe got up earlier and I rolled over and fell back asleep knowing that Daddy would care for Thomas.  When I woke up again (I'd put ear plugs in too), it was 8:30 a.m.!!  The house was pretty quiet but I could hear kids outside.  I peeked out our blinds and my heart leaped for joy.  I could see Thomas on his dirt bike riding down the driveway.   He wasn't dizzy and he was loving riding the little bike!

Now its Tuesday night and today went well too.  I continued alternating between Deep Relief and Rose every four hours.  He had an ounce of Ningxia too.  We did try some deep relief on his feet and right on his calf because he said his legs still really hurt even though his head barely did and he wasn't dizzy.  So happy to have had basically 5 good days in row!!

Tomorrow is our appointment with the Naturopath down in Indiana.  So excited to hear what he has to say so we can get our little buddy all better for good!

Slow progress May 18-23

We went back to our chiropractor on Monday May 18th.  She adjusted a spot between his shoulder blades.  His Atlas was moving fine.  She doesn't feel the dizziness is from anything she can fix.  She suggested we come back in two weeks.  We used Deep Relief on his neck and he took Hyland's headache tabs several times.  I called the neurologist to see if I could get him in sooner.  She told me I was lucky to be getting in, in June that some people wait months.  Thomas hasn't been able to do any school since the end of April.  Granted we home-school and he's actually ahead but if he were in public school and unable to go then what?

On Tuesday the 19th, we tried Hyland's Migraine tabs, deep relief on his neck, rose on his feet and an Epsom salt bath.  We noticed a lump on the side of his neck.  I put a drop of Frankincense oil on it.  By bedtime he was talkative and happy even though his head still hurt.

Wednesday the 20th was another tough day, by afternoon he could no longer walk unassisted due to the dizziness.  I gave him children's Motrin.  At bedtime he said "EVERYTHING hurts; my head, stomach, legs and I'm dizzy".  So sad and hurting for him.

Hugging with Daddy when he got home from work

Thursday the 21st, we had a 45 minute "rest time" where I hugged him in his bed late morning.  He was happy most of the afternoon.  I used Deep Relief and Rose on him. At bedtime, he did ask for a cold washcloth for his head but he didn't complain.

Drawing with chalk was something fun he could do.  He loves to draw Ninja Spy eggs and monster trucks

Friday the 22nd, he woke up around 7:45 a.m. happy and walking normally!   All in all he had a good day and was even able to make a short trip to Meijer with me to pick up cake mix and a few other things for his upcoming birthday party.

Saturday the 23rd he told us that his headache and dizziness rated less than 1/4 on a 1-10 scale.  He makes us laugh with his fractions.  But what I think he was telling us was that he felt pretty good but there was still a little pain going on.  We continued with the Rose and Deep Relief.  He even played outside- no running but he got to walk around and get some fresh air.  At night he was REALLY tired but he could not get to sleep.  It was 9:30 p.m. before he settled down after I snuggled him.

Dizzy Week May 12-17, 2015

We are really frustrated that Thomas still feels so poorly.  He's dizzy every day and at some point or another needs help walking especially on stairs. 

 
We went to the chiropractor Monday, Wednesday and Friday this week.  The first two visits she adjusted his Atlas (C1) on the left just below ear area.  It was really fixated.  That can cause frontal headaches and dizziness.  By Friday though it was moving a lot better. She did not adjust the Atlas then.  Instead she worked on a spot on the base of his neck and also one in his mid back. We have an appointment to come back in on Monday the 18th.  We have been icing the areas adjusted two times a day for 10-15 minutes each time.  She also recommended a supplement by Standard Process called Cruiferous Complete.  It is literally Brussel Sprouts and Kale in pill form.  He takes one a day and it has been shown to help with headaches and migraines.  So far his headache is the same.  

We are still having him follow concussion protocol but we have let him watch a little TV here and there.  He seems to do better outside.  He is typically able to walk unassisted around the yard and has enjoyed picking dandelions to pop off their heads.  We've diffused Joy a few times this week and used some Frankincense on his temples and brain stem but he hasn't gotten any relief yet.  We ordered Deep Relief which is a blend of oils and one that he had the most biomarkers during his Zytoscan.  It was originally out of stock when we first ordered our kit.  I put a drop on the back of his neck yesterday and today.  

He also loves playing water ballon toss.  Tonight he plans to sleep in the tent with his sister Mackenzie in our yard. He's very happy about this and I think that helps him to relax and in turn feel a bit better. 

We contacted our doctor Thursday night with our concerns and asked him about Addison's Disease.  He ordered more blood work and a urine test which I took Thomas for Saturday morning.  We do not have the results yet.  I hope they come tomorrow so I know if we've found a "name" yet or not.  It's heartbreaking watching him scoot around on his back because he's too dizzy to walk or tucking him in at night when he's still in so much pain.  I can't reassure him anymore that maybe it will be better in the morning because it typically isn't.  Mornings are usually worse.  

Starting May 17th, we stopped letting him watch any TV or electronics.  He was doing very little of this anyways as it tended to make his headache worse. 

Mother's Day MRI May 11, 2015

When Joe got up this morning, he found Thomas just outside his bathroom/bedroom on the floor too dizzy to walk again.  We decided enough was enough.  I called our physicians after hours line and spoke at length with the nurse.  It finally came down to taking him to the ER.  So we packed some stuff in case it turned into an extended stay.  Thomas really wanted Mackenzie to come with him.  So we brought her too.

We got to the ER around 8:15 a.m. It wasn't too long before they got us back to a room.  The nurse from the family doctor had phoned ahead that we'd be coming.  After all the history was given and physical and neurological exams done, there were still no answers as to what was going on.  The doctors then worked with the MRI department to get him in.  They were able to make room in their schedule for a 1 p.m. MRI.  So then we just had to wait....  Then the nurse came in and said he had to have an IV.  Oh he was not happy about that program.  After that was in they gave him Ativan to help him relax.  She told us it would have to be given just before the MRI so that it didn't wear off during the MRI.  He received it around 12:30 p.m.  He got very sleepy and his eyes glazed over.  We tried to encourage him to just fall asleep but he kept opening his eyes. 

The MRI took 45 minutes because they also had to do a dye injection during the last 10 minutes.  I got to be in with him and he was fairly calm until the end; then he started sticking his tongue out and moving it side to side.  They had to repeat the last image multiple times.  When he was all done I asked him about the tongue moving and he told me "I was trying to make myself happy, it was the only thing I could move!". He hated the MRI said he felt like he was falling and every time he closed his eyes he'd have horrible scary dreams. 

We got the results shortly after that.  Everything looked normal.  So while we felt a great sense of relief that it wasn't a brain tumor or cancer, we still had ZERO reasons for why he was so dizzy and his head hurt so badly.  Meanwhile the Ativan was taking Thomas on a horrible "trip".  He began seeing double and triple.  He started screaming and pulling the blankets over his head screaming that we had three and four eyes.  He tried getting off the bed and was very agitated.  The doctors came back in and said their theories were post concussion re-occurrence or childhood migraine variance.  They gave us a prescription for a commonly used drug for migraines in children to try while we waited for the follow-up with the pediatric neurologist.  Thomas had to finish a bag of IV fluids before they would let us leave.  It was not an easy task to keep him safely on the bed.  At one point, I seriously thought he might remove his own IV.  The nurse cautioned us to tell doctors in the future that he does not react well to Ativan. So after we left the hospital we had to pick up Chris from home and Cassie from volleyball.  Then we took them all to Chiptole- Thomas' choice.  He ended up eating in the truck but I think he ate 5 tacos.  He was still loopy from the meds and not able to walk well.  Afterwards we had promised him Legos so we went across the street to Target.  He picked a cool Chima Lion set.  Before heading home we stopped at the Walgreens to pick up the migraine prescription we were to start tomorrow.  I didn't research it until after I bought it and got home.  A very common and main side effect is dizziness.  I wanted to scream "Seriously!!!!!!" .  Didn't we go to the ER because he was so dizzy?  So needless to say we aren't trying it.  Hoping to get some sleep tonight but doesn't look to promising as the other crazy side effect of the Ativan is that he feels like he's falling when he's lying down.  He doesn't believe us that he's not.  He keeps screaming help "I'm falling!". 

MRI scheduled May 8-9, 2015

On Friday the hospital scheduled Thomas for an MRI to be done on Monday morning at 9 a.m.  Today, his headache and dizziness were worse in the morning.  I gave him Tylenol when he woke up.  Later he perked up and played race cars with his siblings.  By bedtime, the headache was severe, so more Tylenol and finally to sleep.

Blood Test Results May 7, 2015

We had a variety of blood tests run on Thomas this week.  They included a CK or CPK test which looked at muscle inflammation.  A Connective Tissue Cascade which checked for additional autoimmune diseases like Lupus.  They also ran a CBC and a comprehensive metabolic panel.  All tests came back normal.  So while that's good news it doesn't get us any closer to figuring out why all these symptoms are happening to him. 

The headaches seem to be getting worse and the dizziness is a daily thing with him now.  Recently, late afternoon and early evening are goof periods of time for him.  He tells me he wakes up and his head hurts and he is dizzy in bed.  Right now around 6:15 p.m. he is happy, silly and goofing around.  We have talked to him about not running and just taking it easy.  For the most of the  day, he laid around or played Legos quietly and complained of a bad headache.  We did go outside and toss water balloons in a circle.  He needed assistance with stairs again today.  He says he feels like he will fall forward down them. 

We tried a new blend of oils today but it didn't seem to help and we ended up giving him Tylenol around 2 p.m.  He said that didn't help either and it wasn't until about 4:30 that he started to perk up.  When he perks up he talks and talks and talks....:-)

I spent a good deal of time on the phone trying to learn about the costs ($3500- ughhh!!!_, procedures, insurance requirements, pre-certifications etc.. of the MRI that was ordered.  We are waiting for the Pediatric department at the hospital to call us back to schedule the actual MRI.  Hopefully, he will be able to handle being in the machine with guided imagery (a doctor talking to him the whole time), otherwise they will have to sedate him.

So that's where we are at right now.  Thank you all for your prayers.

Dr. Visit May 5, 2015

Thomas had a horrible headache last night and it was after 10 p.m. with Tylenol before he was able to get to sleep.  He was dizzy even when laying down.  Yesterday, he wanted to play water balloons, so we "sat" him on the driveway to play water balloon toss.  It's really hard to see your child not feel steady enough to walk on his own or stand up to play.  We take a lot for granted each day.

  Stairs are really hard for him today and he has to slide down on his behind.  He doesn't like people knowing that he's real unsteady; especially in public.  He doesn't like me to hold on to him even when he needs it.  He also doesn't like to show his "weaknesses" to dad.  He wants to be big and strong like his larger than life super hero Dad.  This makes it hard on Joe because Thomas gives him "false hope" that he's feeling better by joking with Joe or shooting hoops for a few minutes only to not be able to get off the floor afterwards. 

This morning we decided to call our doctor and bring him in rather than wait for the Rheumatologist to call to schedule an appointment.  We have been communicating with our doctor and his nurse the past few weeks.  We wanted him checked out, including his blood pressure.  Our doctor doesn't have a theory about what is going on.  Thomas' blood pressure stayed steady while laying, sitting and standing.  We took him for labs next door after the appointment.  They will be testing for all kinds of things from the normal counts, to ANA and muscle inflammation.  We were also referred to a Pediatric Neurologist.  He would also like him to have an MRI and skin biopsy.  Our doctor does NOT think it is Lupus because Lupus is so rare in men and even rarer in young children.  So good news or not; I haven't decided.  We are hoping the blood work will give us a clue as to what is going on and how to proceed- either with the Rheumatologist or go the neurology route. 

Thomas obviously isn't making it to his hockey tryouts again tonight.  He did get to pick yet another Lego set for getting his blood drawn and going to the doctor.

We just tried Frankincense on his temples and forehead to see if it would help with his dizziness.  So far he hasn't noticed a change.  We will try it again in the morning.  The oils take time to build in his system.  We used the diffuser with the blend Joy in it today after the doctor and it did seem to calm him.  He's also still drinking his "Ninja juice" in the morning.  Sometimes. he seems okay and plays normally but he says he is in constant pain; it either lessens or he ignores it at times.

Trying to be patient waiting for the test results.  We know God is in control and has a plan for us.  In a recent Bible Study, I read this; "God may not take away all your troubles, but He will bring you through them."

May 4, 2015

Thomas did a great job as goalie on Sunday.  His team lost 5-6 but he stopped a lot of shots.  He rested and played outside on Sunday.  Mostly he had a good day.  At night, he complained that legs legs really hurt.

Today started out okay.  He felt pretty good.  He was able to complete all of his schoolwork.  He has already started 3rd grade (he should just be finishing 2nd grade).  He's on day 30 for every subject except Math; he's on day 60 something.  I took him to gym class at the elementary school.  I didn't know they were going to be running for their fitness test.  He had to run a 1/2 mile.  By the time I realized that was what they were doing, it was too late to stop him.  He came in first in his class with a 3:45 half mile, beating his fall time by 2 seconds.  Immediately following gym class, his head began to hurt and he got dizzy.  His stomach has been hurting a lot too.  We started giving him Aloe again on Saturday and rubbing the digestion blend on his belly but it still hurts.  He needed some help walking and he held on to things in the house if he was moving from room to room.  At one point, he was standing in the entrance to the kitchen, off the hallway by his room, holding onto the wall, talking with everyone in the kitchen, he let go of the wall and almost fell backwards.  Luckily, he reached fast enough to grab the counter and pull himself back up.  Scared me to see him lose his balance like that though.  With all this going on we weren't able to take him to his tryouts for hockey.  I feel terrible.  He really wanted to play for the K-Wings.  The coach did call Joe and they may be able to work something out because the coach has seen Thomas play.  We aren't sure at this point if he can handle playing.  We've decided to call the Pediatric Rheumatologist tomorrow and see how far out we are to get an appointment.  Our doctor sent a referral over late last week and they were to call in 1-2 weeks.  We were planning on waiting until late June or early July to schedule an appointment but with how things are progressing, we've decided not to wait.  We are looking into autoimmune offerings at U of M too.  Something is just not right with the headaches and dizziness.  Poor kid is spending more and more time laying down with his Legos. 

1 step forward 2 back May 2, 2015

Friday was a tough day.  Things began looking up in the evening when we went to Chris' lacrosse game. 

Thomas tossed the football around with Dad during breaks in the game. 
We put Stress Away in the Young Living Diffuser over night.  This morning he woke up happy as could be.  He played and laughed.  At 9:30 a.m. we were at his sister's dance recital.  He was alright, a little bored sitting there.  Afterwards, he was quiet.  We went home and had lunch.  Then he played Legos for a bit.  After Legos, we rode bikes for a little bit but his head started hurting and he got dizzy.  He played inside for awhile and then came back out with our dog.  He ran the dog around the yard.  Then he went for a golf cart ride.  After the golf cart ride, he was miserable.  Terrible headache and hurt all over.  I literally hand fed him his hamburger for dinner and then he laid on the floor for nearly two hours. 

I massaged his body with Stress Away mixed into some coconut oil.  It seemed to calm him some bu as soon as he got up he started crying that his head hurt so bad.  We ended up giving him Children's Tylenol and tucking him into bed with an icepack on his head and a hot water bottle on his belly.  I think he starts feeling better and then he starts playing and it's just too much.  Somehow we have to find a balance.....

Chronic illness upheaval April 30, 2015

Anyone with a child or family member in their care, who suffers from chronic illness can relate to the emotional upheaval that is often present in ones family.  This morning Thomas was very dizzy and everything hurt.  Everyone's schedule gets mixed around when these days happen with hi,.  He needs help walking and moving from place to place.  His big sissy gets very worried about him and she isn't sleeping well due to the upheaval in our home. 

Nothing seems to be helping him today.  Tried 2 cups of lemon water, E-Lyte, Epsom salt bath and the different oil combinations.  The bath seemed to put a little life back in him and he enjoyed playing with his color changer cars. After the bath, we used the calming cream on the bottoms of his feet.  I am concerned as this dizzy spell comes only a week after the last one.  Before they were more spaced out, nearly a month between each episode.  We kept him home from gym class today.  He's been playing Lego's again today.  He crawls around with them on the floor.

The woman that we are working with suggested getting some "starch" into him like french fries.  So I made some french fries with organic potatoes, olive oil and salt.  I baked them on a ceramic baking sheet in the oven.  He enjoyed them; not sure yet if they helped but they were yummy nonetheless.  He is talking and smiling a bit more this afternoon.










I'm tired and frustrated.  Autoimmune disorders have so many unknowns and then throw in a possible concussion and its hard to know what's going on.  We keep trying new things but sometimes it's hard to hold onto the hope that we will one day find the answer.  I am blogging (or journaling as they'd say back in the day) as a form of release.  If you choose to check in and read the blog from time to time hopefully we will be making improvements or at least giving ideas to try if you are in a similar situation

Too dizzy after eating breakfast to sit up

Doing well....April 29, 2015

April 29, 2015: Yesterday around 4 p.m. I used the pain drop on his legs and the Calming Cream on his forehead.  He says  the pain drop doesn't help his headache.  We do have another blend to try on his forehead.  (Pain Cream).  I then left him in the care of his Big Sissy until Daddy got home so I could take Mackenzie to her lacrosse game in Grand Rapids.  Daddy and Sissy said he seemed pretty good; happier for one thing.

At 8:20 p.m. he wanted the pain drop on just his right leg but he said his left leg didn't hurt.  His tummy hurt a little so we used the digestion rub and then he wanted the Calming Cream on his head again for his headache.  The highlight was as I snuggled him in his bed, he was happy, chatty and laughing which RARELY happens at this time of day.  I have left him many nights crying himself to sleep from his leg pain and headaches so at the very least the oils are helping him relax.

This morning I asked him "How ya doing, Buddy?", to which he replied "Pretty good!". He was happily building Legos when I go out of the shower. 

We started the day with 8 oz. of lemon water, followed by the hair therapy drops on his scalp and then some yummy Ninja juice.  We put the pain drop on his right calf at 8:40 a.m. and again at 11:40 a.m.  He had 4 oz. of his E-Lyte (electrolyte replacement) at 10 and another 8 oz. of lemon water at 11:30 a.m.

Thomas joined the local elementary school's "mile club" last fall in correlation with the gym class he takes at the school twice a week.  The club meets at recess on Wednesdays and they run or walk a mile around the track.  If they complete their mile they get a token for their necklace.  I talked it over with my hubby and decided we should let him go and see how it affected him.  He's super excited because at the end of the year, they are having a mile club party with water balloons and he hates when he doesn't feel good enough to go.  We are also trying to make a decision about travel hockey for him and need to gauge what he can handle or not, plus I know we were just plain hopeful it wouldn't set him back like it typically does. 

He ran great; in fact he came in 2nd out of all the second graders.  We had used the Pain Drop just prior to the start of mile club on the right leg and his pain level went from a 4 to a 1 1/2 before he ran.  Unfortunately, when he finished running his pain level was a 5 for his right leg and a 5 for his head.

The good news is it's around 7:30 p.m. now and he just told me he doesn't have a headache!!  Praise God!  Seriously anytime he doesn't have any headache definitely rates MIRACLE status.  His right leg is still bothering him but I plan to rub calming cream on his legs and head again tonight when i tuck him in.  He says he likes it and it makes him sleepy.

We are super impressed with the change in his moods.  He's so much happier.  We can tell he's feeling better because he smiles and laughs a lot.  I really hope it lasts!  I am still skeptical because we've just started and occasionally with other things we've seen some improvement and then stagnated. 

April 28th new treatment started

I left off the last post mentioning Zyto Scans.  Here's a link that explains what that is and how it works http://dianaewald.com/Zyto_compass_body_scan.html if you'd like more information. Starting Saturday night at the recommendation of our "oil lady" we began to have Thomas drink lemon water.  We make this by using 2 cups our reverse osmosis water with 1/2 of an organic lemon's juice added to it.  Saturday he drank one cup so he had about 1/4 of a lemon.  Going forward he drinks 2 cups per day.  For great information on the benefits of drinking lemon water; check out http://www.detoxandbodycleanse.com/detox-juice-recipes/benefits-of-drinking-lemon-water/  I had no idea all of its benefits.  I never get tired of seeing how simple things work.  God's not complicated.  He's given us what we need in whole unaltered forms!

For Thomas' near constant leg pain these past few years, we've tried numerous things including massage, hot water bottles and warm baths.  We've incorporated Epsom salts and essential oils into the massages and baths with limited results.  We typically use NOW, Trinity Essential or Eden's Garden brand oils.

I've had numerous friends purchase from Young Living but I was skeptical of their prices and wondered if it was just an over-priced fad.  From someone who buys "store" brands when possible, I was a hard sell.  Well, so far our "oil lady" has made us believers in Young Livings Superiority in a VERY short time!  She got us started yesterday with a "kit" of sorts until our starter kit and other items from Young Living arrive.

Last night, I was able to roll the "pain drop" blend which has Frankincense, Peppermint and Copaiba onto the back of his knees and down his calf.  Within 5 minutes the pain was GONE! Yes GONE!  He had rated it a number 7 on a scale of 1-10 and it went down to a ZERO!!! Unbelievable!  He begged me to find out if there was one he could use for his headache (another constant for years now).  I consulted with our "oil lady" and we used the same blend on his forehead and temples and it brought some relief.  With oils, it's all about finding out what the body needs and what will work for each individual.  As it was now getting late and Thomas needed to be sleeping, we rubbed the calming cream from the jar on his forehead and temples to further reduce his headache.  It smelled heavenly!  It has some Frankincense, Copaiba, Rose, lavender and Valor.  He liked that and drifted off to dream land.  When he awoke he called his headache just a number 2.  A big improvement from the all day headache on Monday of 7 or higher. 

So this morning we decided to tackle he tummy ache that's been persisting this past week.  Instead of reaching for the George's Aloe that's been persisting this past week.  Instead of reaching for the George's Aloe that hasn't seemed to do the trick recently- even though it used to help, we rubbed the digestion blend on his belly where it hurt and again 5 minutes no tummy ache at all!

Next, he got to have some NINJA JUICE!  What could be better for a kid who loves Ninjas?  NingXia (real name) is whole body nutrient drink with Wolf Berries.  He LOVED it!

He's had a great day thus far and for that I am thankful!  6 days until hockey tryouts!  One day at a time...  God is Awesome!  

Be sure to check out www.wholetotalhealth.com for awesome oil ideas and more.  Just "like" them on Facebook to follow.

Up to the present.... April 27, 2015

I am going to try to condense a lot of information in this post.  It is by no means a complete picture of all that we tried but rather an overview.  I know if you are dealing with an autoimmune disease it can be like navigating a muddy river in the dark. 


 So Thomas' platelets stayed normal and he resumed all his normal little boy activities by mid June.  Late Fall, seemingly over night his baby teeth started falling apart.  We were referred to a pediatric dentist who advised us to have 10 crowns put on his teeth.  In order to do this, he would have to be put under at the hospital.  His surgery was scheduled for February 2011.  We were terrified to have the surgery but we were at a loss to know what to do about his rapidly decaying teeth.  Everything went well with the surgery but we were left with questions as to why this happened to him.  Of course the Dentist's approach was that we must have give him to much juice or sugar yet our other 3 other children did not have cavities....

At this point we didn't really think there was much correlation between the ITP the previous year and this but we were frustrated not to have reasons for why.


Fast forward about a year to the spring of 2012 and several round spots of his hair fell out.  This is called Alopecia Areata and it is yet another autoimmune disease with no known cause.  Basically the body decides to attack the hair follicles causing the hair to fall out in circle shapes.  Eventually over the summer his hair grew back as it does in many Alopecia Areata cases.

The following year in May 2013, Thomas developed yet another autoimmune condition; this time Vitiligo.  Vitiligo causes the body to attack its pigment leaving white patches on the skin.  We first noticed it on Thomas' chin, then his knees, followed by his back, tummy, feet and hands.

After reading lots of literature on autoimmune conditions, we decided to have Thomas go Gluten Free and very limited dairy beginning July 29, 2013.  In August, he began complaining of muscle pain/cramps in his calves.  He also developed headaches especially when reading.  The eye doctor suggested very weak prescription reading glasses which did not help really.  We also removed MSG from our dies.  MSG is actually hidden by a multitude of names and is in virtually every packaged product you buy at the grocery store.  Visit www.truthinlabeling.org to learn for about it.  It is also worthy to note that our doctor ran various blood tests throughout to monitor him including ANA tests.  This test is indicative of autoimmune issues.  His levels were barely elevated.  We did have a consult with a Pediatric Rheumatologist who did not feel that he had rheumatoid arthritis or Lupus at that time.  His vitamin d levels were also very low and our doctor increased his dosage to 2000 IU a day.  Our doctor thought the low d levels might be causing the muscle pain.  Month after month went by and the vitamin D levels stayed below normal.  We also started him on a magnesium drink.

After many hours of research by my thorough husband, we made a large investment in a home purification system by IQ Air.

January 2014 he underwent extensive food sensitivity testing followed by an elimination diet.  Up to this point, Thomas had the worst smelling gas you can imagine.  He could evacuate any room within seconds and it was a constant thing with him. He became known as the "smelly kid" at our house.  He was also diagnosed with systemic candida (yeast) overgrowth.

Beginning in February, we tried the candida diet with him which is absolutely no sugar not even fruit.  It was a HORRIBLE experience for our whole family.  Thomas became very depressed and anxious.  After 90 days (May 2014( of th

e diet we re-tested the food sensitivities and many were healed or lessened in their severity but the candida numbers barely changed.  He also developed new sensitivities to different foods.  Throughout this time he was also supplementing with very strong probiotics (Dr. Mercola Complete Probiotics 70 Billion), grape seed extract (NOW brand), silver (Soverign silver), vitamin c and vitamin B-12 (Source Naturals MethylCobalamin).

The addition of vitamins required a lot of research as so many forms the body cannot process and then the supplement is worthless.  We found that George's Aloe was one supplement that brought relief.  It greatly helped his stomach aches.  Caprylic Acid (Pure Encapsulations_ which is derived from coconuts is supposed to be good for getting rid of yeast overgrowth but it caused my son extreme stomach distress even in small doses.

Around July 2014, we began using a product call Cat's Claw; we started with 1 drop in his OJ and worked up to 3 drops by October.  We saw no results so we stopped using it.  He also took oregano oil diluted in orange juice around this time too.  Oregano oil is an anti-fungal to help with the candida.

 Meanwhile the headaches and muscle pain continued as a daily symptom with no relief.  In August we revisited the eye doctor only to be told that he no longer required even the weak reading lenses and yet the headaches continued and grew worse during reading and other close up activities.  Around this time we also noticed another spot of missing hair (Alopecia Areata) on the side of his head.  It regrew by October but then he developed strange marks on his chest and back.

Strange skin condition picture taken April 9, 2015

Our family doctor thought it was a condition called Pityriasis Rosea and it should clear up on its own even thought we were passed the standard time it took to clear up when we had our appointment. 

December 20, 2014 after reading more about sugar consumption, we cut back again. Children his age should have between 12-20 grams of sugar a day according to various studies and online sites.  A TBSP of our organic Ketchup has 4 grams of sugar, so you can imagine how easy it is to get too much sugar.  A half a cup of ice cream is well over the daily limit.  We let him have unlimited fruit.  We noticed increased tummy aches and headaches when he would go over the 20 grams of sugar.

In January of 2015, his alopecia began spreading on the back of his head and as of right now it is in multiple spots.

On January 27th, he had his first dizzy spell.  He was very dizzy and not able to walk unassisted for most of the day.  The dizziness came back again on February 24th for the day and again went away. 

In February, we began making our own very simple shampoo that actually works very well; 1 cup water (we use reverse osmosis water) and 1 TBSP baking soda. For conditioner we use one cup water and 2 TBSP raw apple cider vinegar.  We also switched our hand soap to 2 TBSP. Castille soap and then fill the bottle with water.  It's runny but does the trick without all the other harmful chemicals that you find in commercial soaps. 

Then on March 7th, during his last hockey game of the season, he collided hard with another player.  At another time I thought I saw him slide head first into the boards but he got back up both times and kept skating.   However, his skating got progressively worse (weaving back and forth) and the coaches pulled him from the game thinking possible concussion.  He passed the concussion screeening but wasn't allowed to go to his team rollerskating party following the game.  He was extremely upset.  I took him to Meijer to let him pick a Lego set and he had to hold on to the cart during the whole trip.  He said he was very dizzy,  tired and his head hurt badly.  All day on the 8th, he was very dizzy; needing assistance to walk around the house.  We took him to our chiropractor twice that week for adjustments which seemed to help at least temporarily.  The dizziness went completely away after a week.  His headache was completely gone for a whole day as well.  He even said his leg pain lessened considerably.

We went to the dermatologist on March 18.  She  was not convinced that his skin condition was Pityraisis Rosea.  She thought it could be Discoid Lupus or Lichen Schlerosis.  She wouldn't be able to tell without doing a skin biopsy.  We opted not to the biopsy at this time and she was fine with us waiting a few months to see what happens with the condition.  With the hair loss, if the condition is Lupus, then the hair loss may be permanent.  She did  approve a cream for his head.

Neither condition really has a cure or even a way to treat safely in children, so while it would be nice to have a "name" for the condition, we aren't sure it's worth the stress and anxiety on his body at this point to find out for sure.  We tried rubbing 2000 IU vitamin D mixed with Castor oil on his skin spots but he hated the oily feeling and we didn't notice any change after several weeks so we stopped.

He is currently taking 1-3 ounces of George's aloe per day, 8 oz. of the Elyte mixture and 2 Colostrum pills and using a hair cream called Bald Spot Treatment made mainly of herbs and oils. 

Thomas began having hockey camps in the evenings in April and his leg pain grew worse.  The dizziness started again on April 23 and he missed his hockey that night because he was too dizzy to skate.  His headaches were back full force too.  He has been so looking forward to trying out for the travel hockey team like his big brother and it was starting to look like that was not going to be possible. 

All in God's timing; multiple things came together with the help from my brother getting us Zyto Compass Scans this past Friday night and a friend connecting is with an extremely knowledgeable woman who has a company that helps people find healing and relief.  More on all of this in the next post as we get started on this new adventure toward healing. 

Back to the beginning- April 26, 2015

I've been kicking around the idea of blogging for awhile now and decided today was the day to give it a try.  I want to start telling our story in hopes that it will help someone else navigating through life with a child who has autoimmune disease(s).  We are in the process of starting yet another "treatment: for him but more on that in the days/weeks to come.  For now I will start by "reliving" various parts of our journey until I bring you to the present and keep you update on our progress.

Our story starts a little over five years ago when Thomas was a joy filled 3 almost 4 year old.  On February 28, 2010, I noticed tiny red dots on Thomas' face.  We had just made homemade candy suckers and used flavorings that listed soy oil in them so I concluded that he was having a reaction to the oil.  Up to this point, he had been a very healthy child but he did exhibit some food sensitivities to strawberries, dairy, food dyes and soy which we typically avoided with him.  That evening I went to the Tim McGraw concert with my best friend leaving the kiddos home with Joe and Kelly's husband John,  On Sunday, February 1st, the red dots were still present and when Big Sissy Cassie gave Thomas his bath that night, she yelled for me to come.  Under Thomas' armpit was the biggest, darkest bruise I could imagine.  I can still picture it clearly when I close my eyes.  We tried to put our fears aside and concluded that maybe all the fun "swinging in circles" Uncle John had done with Thomas during the visit was the cause.  However, on Monday morning he had more bruises on his little body.  They seemed to be multiplying.  I called the doctor and got an appointment for Tuesday, March 2nd.  By then I had been reading everything possible on the internet about bruising and came to two conclusions; leukemia or ITP(Idiopathic thromocytopenic purpura).  Our doctor wanted to  Thomas to fast and have the blood work the following morning.  After the appointment, we head off to our homeschool co-op.  The bruises just kept appearing and it was really scary to see new bruises literally every hour.  I counted over 45 and knew in my gut that something was very wrong.  My prayers were more like one word please and cries constantly circling in my head.  Waiting was so hard....  The waiting turned out to be the much easier part than the blood draw.  All 6 of us went with Thomas to the lab in town to have his blood drawn.  Thomas completely freaked out and the nurses and technicians ended up literally pinning him down on a bed to draw the blood.  By the time they had finished, he had hundreds if not thousands of little red dots on his body.  His crying had broken blood vessels and formed Petechiae.  We took him home expecting results in a few days.  Joe left for work. I made Mickey Mouse pancakes and started a video to help calm him down.  He was happily eating his pancake when the lab called wanting the doctor's office number.  I gave it to them and went about cleaning up the pancake batter mess.  The phone rang again a few minutes later and this time it was the doctor's office.  She told me, I was to call 911 and have an ambulance come and pick Thomas up and take him to the hospital immediately.  She said his platelets were so low that he could bleed to death internally if he were to bump himself.  I called 911, then Joe, my parents and his God parents.  The ambulance ride was awful, he cried the whole way.  ER wasn't much better, eventually  they moved him to a room.  We were told that he did have ITP which occurs when his body attacks his platelets and destroys them.  Of course the I in ITP is for idiopathic which means they have no idea what caused it but it is classified as an autoimmune disorder because as in all autoimmune issues the body is attacking itself in some form.  They ended up giving him a transfusion called Winrho.  However, much to our dismay we learned later that his counts had started rising on their own prior to be given Winhro.  Had I known that they may come up on their own, I would have wanted to try bed rest which he was on in the hospital anyways.  He stayed Wednesday and Thursday in the hospital and then we were able to take him home.  He had to come back every few days for blood draws to check his counts and his activity was severely restricted.  It was really tricky to restrict a 3 year old who actually felt really good; maybe a little more tired than normal but he was not in any pain and yet he had to do mostly sit down quiet activities until his platelet counts came up.

I slept on the floor next to his bed for weeks fearing he would roll out and start bleeding internally.  His counts went up and down over the next few months and finally in June they began to hold steady in the normal platelet range.  The only information the doctors could give as to why this happened was possible "environmental factors".  We began many life style changes at that point.  We added houseplants to help filter out harmful things in the air, we switched all our plastic place settings, cups, and Tupperware for glass ones.  We also got rid of our microwave and started switching to healthier food choices.  Every day we were thankful that he no longer had the bruises and seemed to be getting back to his happy self again.