Thursday, June 18, 2015

Onward - Carly is back on CBD

After many tests from Allergist, Immunologist and Dermatologists and praying daily, Carly is back on CBD tonight! There is no clear reason why she has a rash but the doctors have all determined it is safe for her to continue taking CBD.(especially since the test for Sesame Seed allergy came back negative)

She is starting over at her original dose which is a slight set back since we are back to square one, but we will take it. We are very thankful of the doctors care and concern of Carly's safety. We hope we will continue to see improvement though we know it is not promised.

Thank you for all the thoughts and prayers. Now praying for no more set-backs.

God Strong.

Thursday, June 11, 2015

Carly's CBD Treatment Placed on Hold

Cell phone rings today, I answer. Amy is on the line and tells me Carly has been taken off of CBD completely until further notice. It is hard to describe the emotion that rushed through me, but I can tell you it wasn't a good feeling. All the progress she has made is now in jeopardy all due to a rash. I wanted to cry but couldn't because all I could think about is that this couldn't be happening, but it is.

The doctors are taking Carly's safety and health into consideration by taking her off CBD since the rash was slightly worse this morning. Removing her may or may not be permanent. We wont know until we find out what the source of her rash is. At this point, it is anyone's guess. We've had countless opinions on what it might be and we are looking into every suggestion that has been given to us. There is still the chance this is a fluke or a strep rash and she is placed back on CBD in the future. 

Not much more I can say. Praying better news is coming our way. 

God Strong.

Wednesday, June 10, 2015

CBD Update - Six Week Visit and Possible Set Back

It was our 6 week CBD visit today and Dr. Bebin checked the rash Carly has developed since her last CBD visit and is very concerned. (Rash developed last Thursday, June 4th)

The concern is Carly might be having an allergic reaction to the CBD Oil since the rash showed up just after her last visit when her dose of CBD was "upped". Having this concern, she immediately got us in to see the allergy specialist at Children's. Not one but two doctors walk in the room. One immediately looks at her rash and says "Yes, that's a drug interaction rash" I quickly said, "No, you mean that is not a drug interaction rash". The other doctor then said it did indeed appear to be a drug interaction rash and they started talking about how to treat the rash.

As they spoke among themselves in the exam room, I piped in and said, "Don't forget she tested positive for strep throat on Monday(June 8th)". Obviously, that changes the story because it adds to the difficulty investigating the cause of the rash, which is a good thing. Although strep rash doesn't typically start on the forehead, they could not rule it out.

Suffering from a rash is very rare with CBD Oil usage though it has been reported in a few patients across the United States. If she is allergic to the CBD Oil, she is more than likely allergic to the Sesame Seed Oil. The product, Epidiolex, suspends the CBD in Sesame Seed Oil as a vehicle to take the medicine, whereas some other products use other suspensions like Olive Oil etc.

If the rash is from Strep, it should clear up in the next week. If it's not, it will either stay the same or progressively get worse. As of today, the rash is not harmful, however, I was told if it affects any mucous membranes it can be very harmful or possible fatal. Needless to say, there will be a very close eye kept on the areas to which this could occur. The point was etched in my brain when the doctors told me if it affects her mucous membrane anywhere on her body, call us while you are driving to the ER, not before you take her. It's that serious(as with any rash I am told).

We have an appointment set for one week from today to see if the rash has gone away. If so, we still won't know 100% if its CBD. We will only know that if we go back up on her dose and it returns. There is no pressing need to up the dose since Carly is seeing good results thus far in the study. If it is from the CBD Oil, it will be up to the Doctors to determine whether or not she pushes through rash or is taken off completely. Many factors will come into play to make that determination.

So here we are six weeks into Carly taking CBD. Seizures have become pretty much non-existent and she has seen awesome cognitive ability improvements. It sickens me to know we might have to come off the CBD. No way to tell tonight and all we can do is pray she can keep taking CBD. We have a chance there is no correlation to the oil. I personally think this is a fluke and she will continue down the path of progress.

As Amy has said, maybe the rash was God telling us to take her in to see the Pediatrician on Monday only to discover the Strep Throat. He was being her voice. Otherwise, we would have never known.

Praying Amy is right.

God Strong.

Thursday, June 4, 2015

Keep the Faith and Don't Sink

I stood in the driveway throwing a ball back and forth to Colton. I kept reminding him when he didn't catch one, he was taking his eye off the ball. After about four more catches, he dropped one. He quickly ran to retrieve the ball and said while he was running, "I took my eye off the ball like Peter." Not hearing him clearly the first time I asked him what he said. He looked at me and said "like Peter." Honestly it took me a minute and before I could figure out what he was telling me he said "you know, when Peter took his eyes off of Jesus". He was referring to Matthew 14:22-33 when Peter let his faith wane and started to sink in the water. I strongly feel God was talking to me. I haven't lost Faith but maybe God was reminding me to keep it.

I tell this story to try and remind all of the special needs fathers and/or parents out there, including myself, to have Faith. Our children are suffering and it sucks, no doubt about it. It's hard to find anyone able to relate to the heartache you feel at any given point during the day. However, don't give up. Do not under any circumstance fail the small and big tests of Faith. Faith is the gasoline for your daily fire. Faith is knowing God's got this, we just have to find a way to keep our inner struggles to a minimum while living life to His maximum.

Don't sink in the deep rough waters of Special Needs Parenthood. Keep the Faith.

God Strong.

**Full Disclosure: I had to go re-read Matthew to get the full context on what Jesus was telling Peter. Yes, I forgot. Pastor isn't in front of my last name. :)