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!