Sunday, August 28, 2011

Prevnar Clearing Continued

Dante manages the Prevnar aggravation with an Epsom salt bath
The Prevnar Clearing continues, with Prevnar 10M the last potency- coming next.  Dante has been so happy and well behaved with this remedy!  However, he is aggravated on the second and third day after the remedy.  He is fussy on and off, sleeps more, has had some pretty toxic/yeasty BMs, and his seizures increase in frequency.
This week I began giving him calcium for reasons explained further down.  I am pretty amazed at how connected and verbal he has been.  Dante occasionally says a word here or there, but this week these have increased in frequency.  He has also been understanding commands and communicating his needs so well.  That has made me very happy.  Some stories of Dante this week:
  • This week was the first time ever that Dante has looked at me from his seat in the school bus; he blew kisses to say goodbye!
  • We went on a very long walk today.  Because Dante was aggravated from the Prevnar, I took him on the stroller.  Each time I would tell him, Dante, feet up! he would put his feet where they go (that way we could actually go forward on the stroller!).  On our way back, we stopped to sit on a bench under some trees.  After a little while, Dante said, All done and got down from the bench.  We often hear the train at a distance.  I say TREN in Spanish.  Dante said, TEN.  As soon as we got home he looked at me and said, Agua, which made perfect sense.  He drank lots! 
  • Later on he was opening and closing the patio door.  When he closed the sliding door he said, I did it!
  • While watching a Cookie Monster DVD Dante said, Cookie and when they were counting and got to the number 10, Dante said Ten.  I also heard him say C right before they began a whole part on the letter C.  He knows these DVDs by heart.
  • Twice this weekend he has let me know when he needs to go potty for a BM and he gets it done!
  • Last night, a while after a particularly nasty BM, Dante began to cry in a very bothered way.  He touched the front of his diaper and let me know it hurt.  I applied Desitin and the problem was solved.  Never in his life has Dante been able to tell me what hurts; this is huge!
All of these stories happened in days that Dante not only had a cold, but also has a loose tooth and is aggravated by the remedy.  Im thankful something has gone well despite the seizures!

Nightshade Foods, Calcium levels, and Myoclonic Seizures

Several weeks ago my husband asked me if I thought Dantes change back in April to a vegetarian, and potato based diet, may have something to do with his (new) myoclonic seizures.  I told my husband that I had thought about it, but not investigated it.  Welllast weekend I chose to investigate whether there is a connection between potatoes and myoclonic seizures.  I am lucky to have found someone now who, a year ago, chose to tell the world about her sons myoclonic seizures*.

The key thing I learned from this persons experience is that nightshade foods deplete the body of calcium, and this in turn may contribute to myoclonic seizures (read their whole experience here).  This calcium depletion is more damaging for people (like Dante) who do not eat any dairy products.  Another article describes it this way, A particular group of substances in these [nightshade] foods, called alkaloids, can impact nerve-muscle function and digestive function in animals and humanshealth problems from nightshade foods may only occur in individuals who are especially sensitive to these alkaloid substances.

My main concern after reading about this connection is that Dantes diet was mainly composed of potatoes!  Here is the list of nightshade vegetables:

  • potatoes (not sweet potatoes)
  • Chile peppers (including chili powder)
  • Cape gooseberry
  • Goji berry
  • tomatoes
  • eggplant
  • sweet and hot peppers (including paprika, cayenne pepper and Tabasco sauce)
  • ground cherries
  • tomatillos and tamarillos
  • garden huckleberry and naranjillas
  • pepinos and pimentos

We decided to remove the potatoes from Dantes diet and open the diet up a bit.  Here are the changes we have implemented to balance his nutrients more and see if his seizures go down:
  • Removed potatoes completely for now
  • Added calcium lactate as a supplement
  • Added brown rice to his diet
  • Added more omega 3: 1 more omegabrite per day (he now takes 3/day)
  • Added sardines to his diet (high in omega 3 and calcium)
  • Added organic chicken to his diet
The blogger who first made this connection for me also stated that her son improved after carrots and sweet potatoes (high beta carotene foods) were removed.  I have yet to remove carrots from Dantes diet, but I might do that starting today.  Ive decided to investigate this diet route after increasing Dantes medicine (Keppra) three times with no success.  The last time I increased it, his energy dipped and he was sleepy during the day.  So I went back to the previous dose, which he tolerates fine. 
Dante, first day of 2nd grade

Many children whose seizures do not respond to medication improve tremendously with the Ketogenic diet, one that is high in fat and very low on carbohydrates (similar to the Atkins diet but more extreme).  I pray that we dont have to go that far and that Dante heals with a more balanced and healthy diet.

I must say that I am in awe of the power of the internet.  We have so much information at our fingertips to help ourselves and our loved ones.  I find it phenomenal that if someone is willing to share their experiences, there may be at least one human being on our planet who finds the information and benefits from it.  I thank each and every parent who has the courage to write something of their experience with their special kids, be it a post, a comment, or an email blast, and share that experience with others.  You never know who may benefit from what you have been through.  I have not only learned a ton, but I get so much hope from other families that have at least one or another detail in common with our situation.  Thank you so much for visiting!  Please keep Dante in your prayers that he may heal from these worrisome seizures.


Lucia alonso said...

Que hermoso escuchar tantos avances!!! Ahhhh! Que emoción :) sigue así Dante hermoso, tu Tia Lucy esta sonriendo de oreja a oreja por ti!

God is so good to us, little by little our kids are healing, one day at a time. Slowly but surely we'll get them there :)

Mom Connected said...

Thank you, Lucy!!! I can't believe the changes I've observed with the Prevnar and the Calcium, it really helps balance out the stress from the seizures.

I share in your joy for my boy and for the beautiful Alex!

amy said...

So glad that Dante is speaking more. He is so cute! I lifted him and others up in prayer today at church. May the changes continue. Good luck with the diet research and the seizures. Keep up the great work. Blessings to you all.

Mom Connected said...

Thank you SO much, Amy! It is a true blessing to have both you and Lucy as prayer partners for our kids. There is still a lot of work to be done but the journey is so much more bearable with both of your examples. My prayers are with you and your family as well!