The Light At The End Of The Tunnel, Seems Impossible To Reach

So I’m sitting here in a quiet house.  Thinking……

The husbands in his office.   The kids are both upstairs watching some TV after playing an awesome family game of “Site Word BINGO” and now I am sitting here alone, reflecting.

The past two years have been such a challenge with Anthony.  I hate saying that.  But honestly they really were.  After he had pneumonia two years ago, things were just not the same.  The happy, easy to get along with kiddo….. he was just gone.   The mood swings for no reason, the explosive anger he would have toward his own family members.   I knew it wasn’t him.   I knew something was wrong.   But all my resources,  all my prior knowledge, our DAN doctor, wasn’t helping.    I felt so incredibly lost, stressed, worried, and confused.

You sit and question if these behaviors are due to your child acting out.  Growing up and trying to push buttons.   But then it hits a level of intensity and insanity that you know is not normal.  I swear I tried every parenting tactic I knew.  Every type of punishment/ignore it/reward it good behavior thing I read.  Nothing was working.  There was no reasoning with him.    There were times I literally had to drag him into his room, hold the door shut as he banged and kicked on the other side, worried he was going to hit me, hit his little sister, and then I would go into my own bedroom, and flop down on the bed and cry while staring at the ceiling.  Feeling exhausted in ever way.   Asking God to help me find the answers, help me find the way…. help me see whatever it was I couldn’t see at the time.  Thyroid

I consulted with Anthony’s long time DAN doctor.  We would try some things, they would help for a little while.  Having hope, having it crash when it stopped working.  Raising TMG dosages, trying zinc, trying GABA, going down the PANDAS road and taking out swollen adenoids.    I had so much hope for that.  And when Anthony was on antibiotics, things would be better.  Not perfect, but better. (Thyroiditis)   But then he would come off antibiotics and again, things would be BAD!!  Nothing was working.  Everything felt like a band aid.

More grasping at straws, more floundering.  More HOPE somethings going to work….. more tears when it doesn’t.   Feeling like your relationship with your son…… a once wonderful relationship…….. is crumbling.    Feeling like having a back and forth conversation without a mood swing is becoming more and more rare.  So lets just try to avoid conversations all together.  Because its safer if you do.

And whats even worse is family and friends don’t really see the mood swings.  They don’t hear the awful and crazy things that are coming out of your sons mouth (I will explain why and it makes perfect sense now)  So when you try to unload and vent, they don’t get it.  They don’t get it, because they are not seeing it!!!

Tough two years……

So you grasp at one more straw.   You decide you have to make a huge change, because what you have been doing just isn’t working.  You have to make this change that has been in the back of your mind for awhile, but honestly you wonder if you can mentally, or emotionally handle it.   Change has never been something you do well with.   But geez, you need help!!  You can’t do this anymore.

Everyone in this family is suffering because YOU can’t figure it out. So finally,  you sit down at your computer, and you open up your Facebook chat screen. You type in the name of a doctor that you believe might be able to help your child get out of this cycle and find some REAL answers.  Because you are sick of just “trying” things.  You are sick of hoping and then being let down.   And you honestly wonder if you can handle anymore of this roller coaster.   But you have to try!!!!  It is not in your nature to give up and accept things that you know in your heart can be fixed.

One of the best decisions I have ever made!   Asking Dr. Catanzaro for help!   October 11, 2015 was the day I sent that life changing message.

Once we had our very very long consultation appointment, went over 23 and me (link to get test) , previous labs, and just talked.  I knew Anthony (and myself) were in good hands.   I started Anthony on selenium drops right away for his thyroid.  We went over his issues with glucose/insulin levels, bought a glucose monitor,  and made the change to start a high protein diet, and make sure he was eating somewhat often.   I ordered the Xymogen Relax Max supplement that contained both GABA and L-Theanine, because Anthony’s 23 and me says he needs both at the same time.   We stated talking about doing the Courtagen test and we started the ball rolling on that.

A month later we did some more blood work and discovered Anthony was low in iodine.  So we added that as well.  But during all of this Anthony was doing AMAZING!   Mood swings no more.  When he would get angry about something not going his way, his mood was not explosive.  He got mad, we talked about it, and moved on.  When his blood sugar started to drop,  Anthony started to know the signs.  But sometimes I can sense it before he does and I make sure he gets a protein snack.   23 and me

I mentioned earlier how my extended family never saw Anthony’s huge mood swings, and that would be because I would say 95% of the time we got together with family.  Its either to meet for lunch/dinner/holiday.  And these are all FOOD related.   I always make sure the kids eat something before we leave anywhere, and we usually eat again whenever we are with family.  So Anthony was always fed well, his blood sugar was never sinking low.    But when he was at home, we were not focusing on eating.   Sure I would make meals for the kids, but as for snacks, the pantry is there, and usually they get themselves snacks.  But a lot of snacks are not high in protein.   So even if Anthony would eat a snack between meals, I’m pretty sure his blood sugar was not getting the protein it required.   The worst times for Anthony’s mood swings would be right when he would wake up in the morning (low blood sugar) and right after I picked him up from school (hasn’t ate in awhile, low blood sugar).   He use to also have these awful rages when he was little.  He would wake up from a long 3 hour afternoon nap screaming bloody murder, yet he didn’t seem awake at all (low blood sugar).   He would literally scream for 20 minutes or more and thrashing in my arms.  Sometimes a drink of juice would snap him out of it.  But it was always hard to get him to calm down enough to drink.    Anyway….. it all makes perfect sense knowing what we  know.

Life is now different.  Life is enjoyable and good again.   And I say that with happy tears going down my cheeks.  Because honestly, there have been many times over the past two years when I wondered if my family would EVER get back to feeling this way.

I know the Flovent inhaler Anthony was on for his pneumonia sent his already genetically fragile thyroid into a tailspin, due to the fluoride.   I know according to his 23 and me and Courtagen test,  Anthony has a mitochondrial condition that causes him to become dysglycemic.  And have a fasting intolerance.   And a sluggish thyroid can also in turn make glucose/insulin issues even worse!

We now know what we are dealing with, we can treat it correctly.  And its WORKING!  It has been working for months!     We have experienced no bad side effects, no strong detoxing symptoms, other than some light night sweats the first night Anthony started his iodine supplement.   And why is this?  Because the plan Dr. Catanzaro put in place works perfectly with Anthony’s genetics.  There is no guessing!!  Anthony is doing so well, he has even been able to come off some of his supplements he was previously on before we saw Dr. Catanzaro.

I have met many many many doctors in my life time.  Not just for Anthony, but for myself as well.  And let me tell you, I have maybe met 5 that I would consider FANTASTIC doctors.  Not only fantastic doctors, but doctors that you can really talk to,  voice your opinion and concerns to, feel listened to, validated,  and at the end of the day can consider them a friend.   Dr. Catanzaro is one of those doctors.    He gave me my sweet son back.  He gave me my sanity back.   He gave me closure on a very long and difficult, chapter of my son and I’s life.    And I just want to say “Thank you!” for that!

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30 Responses

  1. Marcy
    Marcy March 2, 2016 at 2:42 am | | Reply

    This post just gave me life. God bless you Kimberly. Cheers for Anthony!!!

  2. Jennifer
    Jennifer March 2, 2016 at 11:11 am | | Reply

    Thank you, your post gives us so much hope and confidence that our kids can get better. My three year old daughter got an autism diagonis last November from Kaizer, my life has never been the same after, hours of research trying to figure out how to help her and adjust our family (I have two older girls aged 7 and 12) to this new diagnosis has been life changing. Also, there is so much information out there on what to do/ what not to that it is very overwhelming. With three kids and being a stay at home mom, the only time I get to do research is at night once the kids are in bed, thank you for this wonderful blog, I tell every parent with an autistic kid about it as it gives me the strength to go on everyday with all the challenges that we are facing.

    After reading your blog, I started giving her DMG and saw a dramatic improvement in her speech and comprehension, her verbal stimming has increased though, but I still think the DMG has done wonders. I will be doing the 23 and me testing next, which lab did you get yours done from? I know Greatplains does it to but thought I would check with you first, I plan to do the tests that don’t need a prescription first and then take the results and go see Dr Catanzaro, Kaizer is not helpful at all, they refused to get a OATS testing done, the pediatrician wont even do a thyroid panel even though her TSH is below normal, she says her T4 is fine so there is no need to do more tests, did Anthony have problems with using the bathroom quite often, my daughter goes to pee pee at least 4 times per hour, her blood glucose is at 73, (70 being the lowest point on the range), we did a urine test and the doctor says everything is normal.

  3. C
    C March 2, 2016 at 11:19 am | | Reply

    Kim- you are an amazing mom! And you give us all hope! I’m so happy things are working out for your family. Keep doing this wonderful work!

  4. anasely
    anasely March 3, 2016 at 10:18 am | | Reply

    Hello Kim. Thank you very much for your post! Your description of Anthony’s behavior is so close to my son’s and we had the same experience with antibiotics, supplements and all (family also…). Everything worked for a while, then stopped working. At present, we want to try normalizing his gut microbiota with mycelliums but he still has his hypoglycemia crisis and he does not grow very well (he is 5 years old). As I have myself a severe iodine deficiency, I think he could also have one. To your point of view, how could I improve the situation (are Quinton Plasma and/or external lugol sufficient to increase iodine in his body?) Did your son had an ammonia breath when he had his crisis? Do you know what it means? Many thanks for your concern. My best. Anasely

    1. Cee
      Cee October 24, 2016 at 1:49 am | | Reply

      Ammonia breath could mean a build up of ammonia in the body. We have the CBS gene that can cause a build up of sulfur and ammonia in the body from foods and supplements or medicines with too much sulfur (there’s a lot of them so be sure to look it up – taurine, NAC, MSM, ALA, SAMe, Epsom salt, anything that ends in ‘sulfate’ comes to mind). There are things you can do to help this – avoid the meds and food high in sulfur (eggs, beans, peanuts, cruciferous veggies, dairy foods…) and monitor ammonia (urine strips) and take yucca or manganese if needed to decrease ammonia. Also we have the gene that makes us not tolerate methyl donors (COMT) so anything that adds a methyl group makes my kid very stimmy, hyper, almost manic and we have to avoid those or be choosy/use sparingly (MSM, melatonin, coQ10, carnitine, theanine, SAMe, methyl b12, DMg, TMG…). Just thought I’d mention these- getting our 23andme results and seeing that these affected our child was very helpful and eye opening. Good luck!

  5. anasely
    anasely March 3, 2016 at 11:53 am | | Reply

    Thank you for your answer, Kimberly. We live in France and I must find an endocrinologist who could do these tests. No, we have not done any of them…

  6. anasely
    anasely March 3, 2016 at 2:07 pm | | Reply

    Thank you so miuch Kimberly! Do you know why antibiotics work if the issue is hormonal? When my son is on antibiotics, he is not irritable anymore, he progresses a lot, etc. Anasely

  7. anasely
    anasely March 3, 2016 at 10:55 pm | | Reply

    Thank you Kimerbly!

  8. Linja
    Linja March 11, 2016 at 9:38 am | | Reply

    So glad he is doing well. Beautiful.

  9. Kim
    Kim May 3, 2016 at 1:04 pm | | Reply

    Hi Kimberley, did you at any time test his gut bacteria & anaerobes to determine
    what those levels all were & detect any gut infections such as parasites, hi or low
    Strep, candida? & any others?

  10. Tamara
    Tamara May 29, 2016 at 9:46 pm | | Reply

    Hi Kimberly,
    Would you be able to give me an idea of the costs for this doctor? I’m very interested. I have a 23 and Me kit but unable to use it (I cannot get my son to spit and am having a very hard time collecting saliva). He sees a MAPS doctor but I am not very impressed. He has had an OATS test done along with lots of other bloodwork. For the most part, we have tried several supplements and they all make my son hyper. The doctor is concerned my son has a lot of inflammation (probable vaccine injury). Is there anything this doctor would be able to do? My son is heterozygous MTHFR but that’s all I know genetically.

  11. Kim
    Kim May 30, 2016 at 3:47 pm | | Reply

    Hi, Those of you with children who are stimming or have voice tics, could it be your children have pandas & is also why when on antibiotics you see some improvements? Reducing the step?

  12. Kim
    Kim May 30, 2016 at 3:52 pm | | Reply

    & what Test did you use to get your blood sugar & insulin levels worked out please? The cortisol did you do am & pm, so blood draw in the am, saliva in the pm?

  13. Stina
    Stina June 13, 2016 at 8:44 am | | Reply

    Kim… I started this journey holding your hands since I read your blog shred to me from your friend Jude, My child was 2 1/2 y/o. Tday is 5 and we had tried everything and still going on strong..We still on our way to recover but I can see the fcross line from here…..THANK YOU ..THANK YOU ..THANK YOU (* once day when my son win an Oscar _grammy..etc your name will be there in the list..Hehe)

    Forever thank you ! God bless

  14. lori woods
    lori woods July 28, 2016 at 9:30 pm | | Reply

    Kim, your son probably has an underlying Strep or Mycoplasma infection, I know because i am a mother of a child like yours, only my son was 15 years old when he changed. P.A.N.D.A.S. antibiotics are needed but pediatric antibiotics don’t work for the myco, and there is a strain of Strep that is resistant to pedi antibiotics also. Strep 19A is the strain that is resistant and needs to be treated accordingly. I hope this helps, good luck with your son, may God bless you and yours, may your boy be healed by the stripes of Jesus. peace to you.
    Lori

  15. Ashley
    Ashley February 18, 2017 at 3:30 pm | | Reply

    Kim,
    What in Anthony’s 23andme called for GABA and l theanine? Does he have GAD mutations? Does he ever have PANDAS flares anymore?

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