Archive for May, 2018

San Jose!

Thursday, May 31st, 2018

Time to head to San Jose! Have not had to go back since picking up my new wheels in March! I have a slew of doctor’s appointments and I need to get my wheelchair readjusted. I have an ingrown toe nail that I have to have looked at, then mom has decided that I need to see the pulmonologist. I have been having terrible sneezing attacks and lots of excess secretions that I am having a hard time managing. I am staying on oxygen more frequently than not, and my parents and Roxy are having to suction me every minute of the day as all I do is cough.

My mom reached out to her Lissencephaly support group, and many moms suggested different things that help dry the secretions. Mom was very excited to try one of them and called the pharmacy to find out which one would be available here. It was disappointing to find out that NONE of them were available here. How could that be? Well it was true, it turns out one of the drugs Atropine was available here but it was mixed with Phenobarbital but we can’t use Phenobarbital with me. Can you believe that Atropine is the same medicine they use in dogs as they do in humans! Atropine drops are used during eye examinations to open and dilate the pupil. If a drop of Atropine is put under the tongue it stops excessive saliva. It also does not affect the entire system. It is a non systemic drug which we like to use as it gives a break to the rest of my organs.

Once mom found out it was the same drug in animals she began calling the vets. The veterinarians use it in dogs before surgery so they don’t salivate during surgery. She then went online to Pets RX and found it but once she went to check out it said it needed a prescription from a vet. So then she started calling everyone she knew with a dog in the States.. We thought for sure some family member or friend of ours would have a good connection with a vet and get us the drops to try! No such luck! Every corner we turned we were told no! It’s been three months since I have been suffering with these excess secretions. I should feel pretty lucky as most Liss/MDS kids like me suffer with these secretions since infant age. This only started happening to me in January. Since we had no luck finding it in the USA nor here mom decided maybe the pulmonologist would have an answer to the this recent problem.

The last time we saw the Pulmonologist was when I was in ICU at Children’s hospital and 2 years old! Remember when I nearly lost my life in intensive care with double pneumonia? I have to say I thoroughly enjoyed seeing the complete look of shock on the doctor’s face when I came rolling into his office! He kept saying he was in shock, that he absolutely could not believe that I was here! Yes here I am alive and well! He asked what had we had been doing for 8 years??? Mom said enjoying life! We discussed the drugs and he confirmed that we could not get here and than began talking to us about lung disease, and prophylactic antibiotics… And mom was like what??? Antibiotics for what, I am not sick! He suggested as a preventive for me for the inevitable fact that I will get a lung disease… No thank you, said mom, not interested. Mom asked him if he knew of SIBO and what antibiotics had done to my stomach. He had not heard of SIBO, and mom said well you don’t want to see Malia like that! He was very nice and very impressed with me it was just that he was so very surprised to see me doing so well minus these secretions! He told us to let him think about it a day and to our complete disbelief he called the next day to say that we could have Atropine made at a compound pharmacy here in San Jose! Woo Hoo!! How exciting I get to try it and see if it works for me! Thanks to Monica Albaugh she has a little boy that uses the Atropine and was the one who told my mom to try it! The next thing we had to do was get the prescription and send to the pharmacy for them to make it! It is a sterile drug since it goes into the eyes so it took a bit more time to make it than normal. We had to stay an extra night!

We picked up Kathy on the 31st, and headed home on Friday after picking the med up Thursday night! We left that morning rushing out the hotel we had to be on the road at 9am and left at 9:15 we made it to the Ferry with two minutes to spare! Whew….. talk about a bit stressful but we made it and got on! Happy to be home, as always trip always wears me out but at least I am sleeping in my own bed now. Will let you know how the atropine works next time!
Malia xo

Family Visits!

Thursday, May 31st, 2018

Definitely enjoyed my time with my Uncle Carl and Cousin Cline! They both came down in May to visit us! I have many friends and family visiting this year! Kathy is coming at the end of May and my Uncle Jesse and Aunt Debbie will be down here next week! My birthday is coming up and I will be TEN YEARS OLD! Can’t believe ten years have already gone by! I am a big girl now! Looking forward to celebrating my day with everyone!
Love Malia