Saturday, November 15, 2014

the root what

I got my whole plant, but what do I do with this root.  There are no directions just this very tough brown root thing.  I turned to google but that wasn't much help.  I contacted my doctor and he continues to assist me in this adventure.  I also contacted the company and asked a few other people familiar with Unani medicine.  I have been told I can crush it or seep it in tea to drink.  Easy, right? Except that the dose is so small my food grade scale won't weigh it.  I need milligrams!  I start my search with local facebook friends looking for a precision scale (like a jewelry or apothecary).  No luck, so I search and buy a reasonably priced one on amazon.  The delphinium sits in my home as I wait....and wait.  
The scale arrives but isn't as precise as I would have liked.  Do I have OCD you might ask?  No, I do not.  If you research the 
Delphinium Dendatum or jadwar, you learn about this scary deadly plant that grows alongside it and looks just like it.
My doctor told me how many milligrams to give my son and the internet research told me the signs of the deadly that is why I am measuring my doctor's dose and then giving my husband 1/2 of it.  What?...he is the only one with a life insurance policy :-)  
The root came from a large company in the U.K. so I am confident we got the right plant, the safe one that is going to make the headlines.

My son continues to do well with the other Unani medicine, occasional fits at night but wonderful during the day.  We started taking turmeric about a week ago before we go to bed.  I have read a lot about that and if you google turmeric and seizures there is some optimistic studies with brain health and even stopping some seizures.  I consulted my Unani doctor again and started this with his guidance.  

Sunday, November 2, 2014

little setback; might know why; difficulty getting jams

Ok, first we had a little setback last week and we had some daytime "fits" for a few days.  This has not been common for us since starting this journey, so a little disappointed but still very grateful that the intensity and duration are much less than in the past.  I contacted his doctor.  We have been on some new medicines and some of the old ones had been stopped.  My son was doing so well, he had stopped some and added some for overall health.  The doctor told me to restart the old one since he had a setback.  I looked up ingredients again and the one stopped was the one that had Delphinium Dendatum!  The problem is I ran out and it wasn't reordered!  

Ok, so I sent my doctor more money and he reordered it.  The story doesn't end there!  I have come to find out that the majority of what I have been paying has been for shipping costs.  There is only one provider that will ship jams to the United States for an obscene amount of money.  Now that company won't ship either.  WTF...this stuff isn't illegal!  I am still trying to get details but it appears India can't ship liquid or semi liquid things to the United States.  This sounds ridiculous so I am still researching.  I have one of my blog readers in India researching to see if she can have it delivered to her and if there is a way for her to mail it to me with UPS or Fed Ex or something.

In the meantime, I hit the wonderful internet searching for Delphinium Dendatum.  I found another provider that will ship me Delphinium Dendatum as a raw herb.  My doctor states that it is important but since it is not the combination of different herbs  it will not  show better results.  I have ordered the raw herb while I  continue my research; but it might be time for me to continue alone.

Tuesday, October 7, 2014

4 months and huge impovement!

We just received our new shipment from India.  Last month, our Unani doctor and I were discussing his percentage of improvement.  Last month, I felt confident saying there was a 40% improvement but hesitated about saying 50%.  Well, that is no longer true!  I can easily and confidently say...absolutely!  My son still has occasional grand mal's overnight but he is never compromised during the day!  He is doing amazing at his studies and excelling in leaps and bounds in all the other areas of his life.  He will never be in a drug cloud again!  As our Unani doctor had hoped; he is going longer and longer without any electrical activity and they are less and less severe!

We continue on two of the four original Unani medicines and replaced one for increased overall immunity.  We continue to be pharmaceutical free!  If anyone has any questions, or wants to pursue this for themselves....PLEASE contact me.  Don't give up or think you have no other options!

Friday, September 5, 2014

tweaking treatment

My doctor asked if we would say that my son has improved 50% since starting the unani treatments. My husband and I discussed it and look over the facts.  If doctor had asked 30%...ABSOLUTELY; if he asked 40%...yes; thank you.  However, we were having a hard time saying yes to 50%.  We discussed our options and my doctor placed another order that is being couriered to me from India. Once it arrives, he will tell me what it is and how to administer it.  My doctor keeps reassuring me that we are treating and healing from within not trying to stop symptoms but return to perfect health.  So 40% improvement in 3 months is very exciting and I have so much to be grateful for. I can't wait to visit Dubai and say thank you personally when this experience is over.

Saturday, August 30, 2014

3 months in...

Okay, it is 3 months since we started the unani treatments and it is 3 weeks since my son has had a daytime "fit" as my unani doctor refers to it.  He has occasional ones while he sleeps but it has not affected his daytime activities.  He is excelling in his studies and enjoying and remembering EVERYTHING since he is no longer on any pharmaceuticals!  His doctor and I are discussing over the weekend his percentage of improvement so we can tweak his current treatments!  Life is good.

Sunday, August 3, 2014

next step

My doctor is back from vacation and we had a long chat.  My son did amazing while he was gone....100% 6 year old boy!!!!!

Two days ago, I started to notice small things and then he had a few tonic/clonic seizures overnight but definitely some abnormal brain activity during the day.  He has been restless and unable to focus.  I know no one would complain about that after watching your child have seizures; so I am not complaining....just observing and being cautious because this means he is due to have one at any time.
The past two weeks, he has been asking for food every awake moment so I am also excited he is going through a growth spurt!

When I told my doctor all of this; he prescribed for us to start the habbe jadwar tonight!  My very first blog posts links to the article that started all of this.  The plant that grows on the Himalayas— the Delphinium Denudatum — 

My doctor first wanted to treat his brain with a tonic for at least a month and now we got the go ahead to start the jadwar and report back in 10 days.  Wish us miracles!

Friday, July 25, 2014

happily moving forward

My doctor has been on vacation for like 3 weeks...that is unheard of in the United States ;-)  However, he is still checking in on us.  As I mentioned in earlier post I have been searching far and wide for pediatric neurologist that will think outside of the box with me.  Suggestions have poured in from several sources and i have done my research.  I have two appointments in September with two different doctors; that I have researched and am optimistic to meet.

Now back to my son; he was not developmentally delayed in any way before this started.  As too many of you know, the drugs really have some nasty side effects.  While on the pharmaceuticals he had trouble doing some stuff that he was able to do fine before.  Now that we are off of daily pharmaceuticals he is advancing in leaps and bounds in so many areas.  I marvel at my beautiful little man and what he has overcome!  We have had two nights in the past two weeks, where he had a seizure when he slept.  But just one seizure; that is huge because his dis-ease was characterized by clusters...there was never just one!  Two individual events in two weeks...THAT IS HUGE!  His body really is healing from the inside out.  I have been told repeatedly by the doctor and those that are familiar with ayurvedic medicine that this is a lengthy progress because they are helping the body heal; not suppress or mask the symptoms.  I know two weeks is not a long time; but it is the start of something wonderful.

Thursday, July 10, 2014

inventing a new doctor

I have been asking the Unani doctor if we should increase dosage and add habbe jadwar.  He is asking me to get an eeg so we can evaluate for improvement.  I told him here in the US, I just can't get and eeg this week.

Not to be defeated, I started my research.  We have seen a pediatric neurologist for the past year that is not supportive of alternative treatments.  We have seen improvement with the holy basil and as I said previously we have weaned off of daily medications.  We do still you Valium tablets for clusters as needed; which is much better in my opinion than daily medicines that don't work and fog my son't brain.  When he is not having seizures, he is clearer than he has ever been!

Therefore, I am kind of between neurologists until I find one that is aligned with our beliefs and open to alternative treatments.

I called around to facilities that perform eeg's and are not located in a hospital setting.  It would cost $400 for a one hour and $450.00 for a 24 hour if you don't have insurance.  I do; but I paid close to $800 out of pocket for the 24 hour eeg we had at the doctor's office with insurance.

You need a doctor's note/prescription to have one.  I asked how much it would cost without insurance to see their neurologists that sees children and was told $175 for the first appointment and $75 there after.  I paid out of pocket  $660.00 to see our neurologist with insurance.  Note...I had a high deductible to meet and that is why I had to pay all of this; it was slightly adjusted...the fees were higher but this was what was owed after the insurance discount!!!

So I am now on the hunt for a doctor (preferably neurologist) that is supportive of alternative treatments!

Tuesday, July 1, 2014

completely off of pharmaceuticals....

It has taken a total of 5 months to slowly, painfully wean the medicine from my son's system.  I started wtih a razor blade and took off small pieces every 4 days.  The weaning process itself was good because we went so slow.  He has been off for 3 days now and we are seeing some withdrawal symptoms.  Nausea and vomiting until midday; then he has a voracious appetite.  Very restless sleeping moving, sitting up and all over the bed all night and therefore very sleepy until midday.  We have had a total of three seizures in the last 3 days following a wonderful...did I say that loud enough....WONDERFUL week.

We are at full alert, since we know the character of the seizures could change without the medication...that wasn't stopping them.  As a side note, his neurologist agreed the drugs were doing nothing but they didn't have anything else to offer us.

I have been in contact with his unani doctor weekly with updates and he answers so quickly and reassuringly.  I wish I had a doctor in the US that really believed and conveyed to me that he will be fine!!!!!

Unani medicine...ok here is what we are doing...

khameerae gaozaban-1/2 tea spoon empty stomach with a glass of milk in the morning

Habb Azaraqi 1/2 tab daily after break fast

itrifal usthoqudus- given at bedtime mix in half cup of warm water. 1/2 tea spoon

This is our schedule for a little while yet; then the doctor will let me know if we should change anything.

I would like to note the article talked about  Delphinium Denudatum, which in unani medicine is Habbe Jawahar.  We haven't even taken that yet.  I do have it in my possession but the doctor doesn't know if he will need it.

We have never gone more than two weeks without a seizure so that is when I will start partying but for now two weeks ago and the times before that the routine was that he was having at least one just about every night.

Each one of you are in my thoughts as you have your struggles/challenges but please don't give up.  We can all help each other!

Thursday, June 12, 2014

I am having a little celebration!

A few exciting things.  First we haven't had a nighttime seizure in a few days!  Next, we continue the wean of the pharmaceuticals and my son is almost drug free...I see his personality coming out.  It has been muted for the past year, and I forget.

Last night my son asked me to sing him a lullaby before dozing off to sleep and this am he woke early before anyone else and wanted  to get up.  Now let me explain why this gives me chills...

Last year, before this all started happening this was life.  I sang a few verses of a lullaby before bed and he used to wake up early and I used to be so agitated because I wanted just a little more sleep.  We were living in two story home at the time and he was 5; if he wanted to get up I had to get up and go downstairs with him!  This morning he woke up like old times...too early and I was too tired but now he is 6 and we live in a rancher.  He was able to go in the room next to mine and play.  It is almost like some of his behaviors are picking up where they left off a year ago before the drugs.  I may be reading too much into this but I don't care...I am allowed to celebrate anything and everything I want!

Life is good!

Saturday, June 7, 2014

rabbit poop, gold bee-bee's, and taffy...oh my!

This is our third day using the unani medicine; as I said earlier there are 4 things to give him.  Between this and his regular stuff, I am constantly giving this kid "vitamins".  He must think he is really  I might start giving the rest of the family something that looks like it; so he doesn't feel like he is the only one being chased with a spoon!

The first thing he gets when he wakes up on an empty stomach is this jelly type stuff that is sticky and sweet...reminds me of melted soft water taffy followed by a glass of milk.  Then after breakfast he gets rabbit poop (I swear it could be); one pellet.  Throughout the day, his other stuff and then at 6pm he gets 1/2 a gold bee-bee (the kind rotten kids shot when I was growing up)  I have to cut it in half and it could be mud packed on the inside; I have no clue!  Last but not least, before he goes to bed he gets some more sticky jelly stuff that does not taste sweet, I add a little honey and I am told to mix it in warm water and get him to drink it.

All kidding aside; the doctor has been right by my side in emails and reassuring me that there are no side effects.

Tuesday, June 3, 2014

It arrived today!

Here is a picture of my shipment from India today; 6 months supply of things I can't pronounce!

Two of the items are in a jam form; one I give in the morning on an empty stomach and the other I give at bedtime with warm water.

This is what I received:

itrifal usthoqudus
Khameerae Gaozaban
Habb Azaraqi
Habb Jadwar

The other two items are in pill form and being checked on to see if they are pediatric dose or adult dose before I get more instructions.  

Dr Syed Asaduddin Ahmed has been wonderful. He was checking on my shipment and has answered every one of my questions. I highly recommend him as a provider. I am expecting wonderful things with his help!

This is what he replied when I told him about the results many people were having with Holy basil.."Holy basil is basically used as Blood purifier & immune modulator. by detox you might be finding some improvement in the children"

Saturday, May 24, 2014

I have been in contact with my doctor in another world...Dubai to be exact.  I just learned that Friday and Saturday is there weekend.  He has been in constant contact with me while orchestrating the delivery of my package to the United States.  The package left India on Friday (May 23, 2014).  My son is doing wonderful right now so I am able to be at a place of pure gratitude for all the wonderful people that I have met along this crazy journey.  I have told the people at my son's school that I will be on CNN one day proclaiming this to the world!  I start off the conversation with...there is this plant that grows on the side of a Himalayan mountain and then pause for effect!  It really does sound like I am getting ready to tell a joke or made up story.

I will never give up hope and never stop being grateful.

Let the adventure continue...

Wednesday, May 21, 2014

Once upon a time, two registered nurses met at the gym found love and created two beautiful babies...a girl and a boy!  The mom (that's me) got to stay home and start a new chapter in her 40's.  Travels, beach condo, health and money.  Then our son, out of the blue while trying to fall asleep had a seizure at the age of 4 1/2.  Unfortunately, being a nurse or working in any medical facility can not help you deal with this.  As the months went on;  the tests came back negative and the seizures continued and the drugs failed.  We wound up at CHOP (Children's Hospital of Philadelphia) for 9 days and left with a child that couldn't walk alone, barely spoke and had regressed to playing with baby toys.  As the days progressed we saw more and more of him return.  Over the months, with all the drugs on board we started to forget what he was like...before.

The drugs stopped working; so more were added!  He started a horrible diet that has helped many children.  It would have been worth it if it worked...but this is not the happy ending.  After not being able to have more than 10 carbs a day...10!  There is one carb in a strawberry! We finally stopped the diet, that I think was making him worse.

We stumbled upon a herb that you can get at whole foods or on amazon; that again was helping so many children.  Could this be it?!  Well, I do believe it has helped and we started to wean some of his nasty drugs that don't work.

We have tried the Frankencesne that a lot of people are talking about too effectively stop a seizure; but that didn't work for us either.  Don't rule it out for yourself; it may help.

Then I saw this article about a plant root on the other side of the world that treats seizures and so my quest begins...