Super hero Malia

The first two weeks of the New Year went okay. Thankfully I have the great light up spin lights that grab my attention and distract me sometimes from crying. We have gone through a few of them recently.. Unfortunately I am still not comfortable. I have a hard time sleeping. I am crying a lot. My mom and dad I know feel so helpless. I can’t tell them what is bothering me. I feel helpless sometimes too because I want to tell them but I can’t. So my parents have to play the guessing game with me and the doctors to try and figure out what is wrong. It is so hard sometimes.

On Saturday the 15th of January, me granny, Natalia, and mom headed into San Jose again. It was time to do another round of testing. Because I was crying so hard and screaming out in pain we did an ultrasound on me and looked for pancreatitis, kidney stones, infection of kidney, and general swelling of abdomen. We ran every blood test there is and we took stool samples. The ultra sound went great. Nothing wrong there. The blood work came back perfect no signs of infection.

We found a great weekend deal at the Residence Inn, it was very convenient as it is across the parking lot from my hospital CIMA. Mom finally asked Dr. Castro if she could recommend a sedative to give me so that I could sleep and my mom and granny too. Being at the hotel and screaming is a bit different than being at home. When I go into these moments of crying which at sometimes last for hours I sometimes actually stop breathing from crying so hard. Nothing can deter me from crying when I am in this hysterical moment. Why can’t they figure something out? So that night mom gave me Chloral Hydrate,it worked I slept for three hours. When I woke up crying mom took me outside at 4am and strolled the Boulevard with me until the sun came up. Interestingly enough, When we walked out the front doors of the hotel there was this strange man sitting on a bench. We couldn’t make him out very well as he was further down from the hotel We decided to avoid him completely and only walked up and down the right side of the shops. The street was lit up and we were in a shopping area so we were the only ones out on the boulevard window shopping. There was a guard at the top of the street by the hotel so we felt safe. We both cried that night,Mom from frustration of not being able to help me and me from being tired of being in pain. The weird man on the bench never moved and he always kept staring one way…. Mom and I a couple of times peered around the corner to spy on him but he never budged. When the sun started to rise above the mountains at 5:15am we then gained courage and decided to go check this weirdo out! We crossed the road and went to the other side, and there on the bench he sat still staring in that same direction! Well….. guess who it was?? It was a man with a chicken on his head made out of LEGOS!!! Yes a LEGO man! Mom started to laugh so hard and I was crying and so there we were laughing and crying together with the crazy Lego man! Out of all this sadness and misery at the moment there had to be some humor! We strolled back into the hotel, and the front desk person was nice enough to put some cartoons on for me at 6:00 am so we hung out in the lobby until 6:30 until Granny was calling the cell phone in a panic wanting to know where in the world we were!!

The following day we took an X-ray on my tummy again. The X-ray showed extreme amounts of gas and distention of my colon. A very good reason for me to be crying out in pain. The gastroenterologist had upped my Miralax and I was taking it three times a day. It was looking like the Miralax was the culprit of my pain and for causing me to have so much gas. Dra. Castro told me to stop the miralax and start taking Lactulosa another form of laxative. Since I stopped the miralax I began to calm down and started sleeping again. We took that as a positive sign and that Miralax was the culprit to my problems. We decided to head back home on Tuesday.

By Thursday, I began crying, grinding my teeth, and gagging again. :( Dra. Castro suggested we come back and do a gastric emptying study. This is an exam that uses nuclear medicine to determine how fast food leaves the stomach. It will take 5 hours to do the exam. I have to have an empty tummy and thankfully the Ultrasound doc, Dr. Ramirez made room for me and squeezed me in for the study on Tuesday. We were home for less than a week when we loaded back up and went to San Jose again. Me, Granny, Naty and mom loaded up me and ALL MY THINGS and off to San Jose we went. My mom promised me we would not be going home without better answers.

The Gastric study showed that I digested my food very well and that everything was normal until the end when the food reached the end of colon the Dr suspected I may have Hisrshsprung Disease. Hirschsprung’s disease is a condition that affects the large intestine (colon) and causes problems with passing stool. It is caused by chronic constipation. Looking at the symptoms we thought for sure this could be it, but in the end it was determined by three different doctors that I did not have it. At one point we were relieved because we thought we finally had an answer to my agony but no…. we must continue to keep on looking.

Next study was an Endoscopy. An Endoscopy is a nonsurgical procedure used to examine a person’s digestive tract. Using an endoscope, a flexible tube with a light and camera attached to it, a doctor can view pictures of my digestive tract. This was scheduled for Saturday at 10am. I would have to be sedated pretty heavily and so mom and me and Naty headed to the hospital. My mom was able to be in the surgery room with me and she watched the entire exam. I did great. The doctor and nurse in the room were very impressed with me and how well I behaved. I am such a good little patient! :) The Endoscopy showed slight gastritis,inflammation and irritation of the stomach lining. My tummy showed it was very red. We then decided we may have found the answer to my problems with this gastritis which can cause a lot of pain and discomfort. We got back to the hotel and MJ came to see me and brought me new books to read. It was great to see her, my first therapist Linda came by to see us as well. That night I was very uncomfortable and cried a lot but it was expected as I had just had a tube rammed down my throat and into my tummy. The doctor told us to double up on Nexium and we also have me eating only a premade formula for children who can not tolerate any foods. This is a bummer as my mommy always cooked me the most delicious and yummy meals for me everyday.I have lost 10 pounds during all this drama. Since we found out that I had gastritis we decided to head home on Sunday and see how the week went at home. Staying in hotels is definitely not any fun and mom promised me Naty and Granny that she would take us girls down to the beach when we got home. My mom kept her promise we did go to the beach, dad came down at lunch and cooked up some hot dogs and we had a nice day.

It is the oddest I thing, I always seem to get better in San Jose we begin to feel comfortable that we have found the answer to my pain and suffering but then when I get home usually 36 hours later it all starts up again. My mom has reached out to two doctors in the USA hoping for help to see if there is something they are missing here. My problems are stemming from my stomach. There are only 3 pediatric gastroenterologist here in CR and I have been to all three and to be honest we really aren’t impressed with any of them. So mom sent all my information to a pediatric GI in California. My crying is getting worse. I am now having to sleep every night with a sedative as without it I would only cry and we have to get some sleep. I feel like I have ants in my pants. I kick and scream and cry out. Nothing calms me. Strolling around does a little bit… if I am not moving I am not happy. My mom is calling the GI in Costa Rica and she says it is not my stomach. She says it is my brain. I could possibly have central irritability. My mom, keeps insisting to her that yes it is my stomach. My lissecephaly is not causing me to behave like this no way.

February 6th my mom dropped my granny off at the airport. We were sad to see her go. She has been such a big help. I was grateful to have the time with her. Granny has lots of patience and she tried and tried to soothe me. Love my granny..It has now been ten days since I have been home and it is time to go back to the city because the crying and pain is uncontrollable. I am grinding my teeth my number one sign of something bothering me and I have begun to have nauseas again. While packing up mom took our passports and warm clothes with us as my parents were thinking that if we did not get an answer on this trip to San Jose we would be flying to the USA for further testing. We loaded up the car and off we went for the 2pm ferry.

Mom decided to go ahead and see my neurologist. We went straight from the ferry to her office. Natalia had to take me outside and push me up and down the hallway while mom talked to Dr. Hernandez as I was crying so hard they could not hear each other talk. Dr. Hernandez was surprised to see me this way as I have never been to her office like this I am always a very mellow kid. I don’t scream like this for no reason! The GI works at Children’s Hospital and she has spoken to my neuro. She as well told the neurologist that she thought is was my brain causing this behavior. Mom kept insisting to both it was not. We planned to do an EEG since I had not had one in a long time. The appt with the neuro was uneventful. We did not get any new answers. Just speculation that it might be my brain. The GI at this point is trying to convince my mom that I should be admitted to the Children’s Hospital so they can “study” me further. Mom didnt like this idea one bit. Admit me in a hospital full of sick kids to study what?? We have done every exam out there and I have a greater chance of catching a bacteria inside that hospital then by staying out.

Mom called my dentist the next day. We had not checked my mouth. Maybe I had an abscess that we could not see? Dr. Mermelstein checked me over and congratulated me on my great dental hygiene. Nothing there, my mouth checks out fine. Off for the EEG. I did really well for the tech who ran the EEG. My test came back unbelievable. My EEG which is normally a complete mess with big black spikes going up and down the page was now small beautiful little brain waves. Amazing. Thank you CANNABIS. It is this plant that GOD put on this planet to help cure illnesses and stop seizures that has helped me to have a EEG look like this! I have had 5 EEG’s in my short 7 years and not one has one ever looked so good. My neuro was shocked she couldn’t believe it either. In all this time of crying and being in pain, my seizures have actually calmed down and I haven’t had any in over three weeks. :)

Next appointment is the allergist. We must rule out allergies. We tested every single thing I have eaten….. I had to get the patches put on my back and wait 48 hours before the Allergist could take them off and check out if I had any sensitivities. The only thing I showed allergic to was sweet potato and I did used to eat that every day, but the doctor did not suspect that the sweet potato was causing my grief.

Mom has been conversing with the GI in California via email. She suggested we study my poop for procalcetina. They don’t test for that here so if you can imagine the lab packed up my poop in dry ice and off to a California lab it went. It would take 2 weeks to get the result back. The GI in Costa Rica, had suggested that I test my poop for sugars. Low and behold, after all this time the test comes back very very high in sugar. The GI here says I could be lactose intolerant. Mom tells her I don’t drink milk and never have so……… the only other thing it could possibly be is SMALL INTESTINAL BACTERIAL OVERGROWTH(SIBO), defined as excessive bacteria in the small intestine, remains a poorly understood disease and hard to detect. Symptoms for SIBO: abdominal pain, gas, reflux, nauseas, constipation, diarrhea, bloating, abdominal distention….. Everything single symptom I have. In Costa Rica, there is no way to test for it and even in the states it only done by a breath test so many times false negatives occur.

How did this happen? Well, remember when I had the bronchitis, and then the UTI? I took antibiotics for almost two months. Those antibiotics which were to help cure me also killed all the good bacteria in my stomach which than lead to an overgrowth of bacteria in my colon which then creeps up into the small intestine. These bacteria cause havoc in my tummy and caused me to have so much pain. The only way we could know whether or not I had SIBO was to take a gut antibiotic, and so it is ironic as antibiotics are what put me in this position and now I must take them again to kill the bad bacteria in my tummy.

After 36 hours mom and Naty began to see improvement. I am sleeping! I am not howling in pain we are seeing IMPROVEMENT!!! I took Metronidazole for 21 days. I don’t like taking antibiotics at all, and they do cause pain and discomfort to my stomach but I had to take them. Mom made a Skype appointment with the GI in California, they were to speak for 30 minutes about me and my upcoming plan. The GI only wanted to charge us $800 for a 30 minute call! My mom was like are you kidding me???? Seriously? You are not going to even look at or touch my daughter but yet you want to charge $800 for a phone call??? Geez…. You must be kidding me. We paid $350 the squeaky wheel gets the grease. The Skype call went well and we did learn of a new probiotic that I would be taking that is only available in the States but is supposed to be the best ever on helping reconstruct the good bacteria in my tummy. VSL #3 is the probiotic, and thankfully we were able to organize getting it down here to me. After 10 days at the hotel we are finally now going home. MJ came to see me on my last night and we had a pajama party and she and I slept together and cuddled and hugged all night. It was very special and great to see her. The following morning we began to pack up and head back home.
It seems that the antibiotic is working. I have stopped having nauseas and not grinding my teeth as much. The trip home went smoothly, sure am glad I have my new van to ride home in style!

I dont understand why sometimes I have to go through so much. I do know that I am stronger person because of it. I am a super hero to my parents because not many adults could withstand all that I have been through and I am only 7 years old. Is it fair that I have to go through these challenges? No not really but then who am I to judge? Other children are worse off than me and I can only thank GOD for giving me two loving parents who would do anything in this world for me and won’t stop until they get the answers they need to help me. My mom always says what does not kill us makes us stronger…. And can I just say we are one tough family.
Love Malia

3 Responses to “Super hero Malia”

  1. ev says:

    Hello,
    I am following your website with great interest as my daughter has been recently diagnosed with lisencephaly. However, I cannot click onto your posts any longer; I see the title but cannot read the post. Just wondering if this is occurring for anyone else? Thank you.

  2. Rachel says:

    Thank you for following Malia. She has not been well for months and until now has she had the energy to give her mom all the thoughts and feelings she has had over these months! Start with the title BIG NEWS and read up… Wishing you all the best with you daughter and please know we are here to help if you have any questions. Much love Malia

  3. Marg Moore says:

    Malia, you are definitely a super hero. I don’t know anyone else as strong as you.

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