On the way to Boston, Honeybunches was getting very upset. We accidently were in the "Quiet car" and had to find some place else to sit because he was not being "Quiet". He wanted lunch at 8:00. I gave him the choice of 3 other snacks. He fussed for about 20-30 minutes about that. "Mommy. Mom. I am hungry. Mommy. Mom." I stayed consistent with the choices he could have. This husky man with grey hair who had to be into his 60s kept staring at us. Unsure of what to think of him, I sent him a smile as E was fussing. He smiled back so I guess he was not too frustrated lol. He sure did stare a lot. Finally Honeybunches gave up and chose Strawberries and Apples with Peanut Butter.
We arrived in Boston with some time to spare. That was great because neither Honeybunches or I like rushing. They had me fill out a few questionnaires and some other paperwork. His appointment was scheduled at 10. It was about 10:40 before we got into the large conference room. The receptionist told me that they wanted to discuss his case before calling us in. At least she communicated well and didn't just leave us waiting wondering. When Honeybunches and I got called in, upon entering the large sunlit conference room, I was a bit overwhelmed. I counted 14 doctors, students and residents sitting around the brown rectangular wooden table. I was expecting around 5, not 14! They went around and introduced themselves. It went too fast for me to write every one's names and positions down. DH waited in the waiting area. All those people would have been too much for him. He seemed very impatient yesterday even just waiting for us to be called in. Honeybunches did great for us in there. I was wondering if he would struggle without Daddy, but he was fine. He really liked the 20 something male Pediatrics resident who was sitting at the end of the table not far from us. He kept giving Honeybunches math problems to do and had him color. I focused on his side of the room, to my left, because it was easier for me then getting overwhelmed by looking around at all those people. On his side of the room, was also the head Child Psychiatrist and another doc, whom I think worked in Psychology maybe that was at the head of the table. That's where my attention was focused. It was less intimidating that way and they were the ones asking all the questions.
They went over his developmental history, all his previous testing, lab history, medication history, diagnostic history, symptoms history, health history, got my family history, and asked a million questions. The first 2 1/2 hours was all questions directed towards me and Honeybunches. Then the last half hour they came up with a bunch of possibilities...
They may possibly want to do a SPECT scan. The doc at the head of the table, mentioned that. He said that there were clinical trials being done but they stopped because they had a hard time getting the children to remain still for 10 minutes. He asked me if Honeybunches would. I honestly said "We would not know until if we tried it". He said that a certain part of the brain shows up differently with children who have BP. If it's on one side it's BP and if it is on the other it's Schizo-affective. They said to do this he'd have to have radioactive dye and it only takes 10 minutes but he would need to remain still. That was one possibility.
They said there are two types of Autism, one is genetic and the other is ASD features. They said it's possible that some of his issues may be environmental. They asked if there were any "Environmental concerns" in my town. I told them it's a factory town. The biggest one is the brake factory which leaves the town smelling like burning rubber. There are other factories here too. They asked if others in the area have children with BP, Autism or delays. IDK. I wonder how I can find out more about that? They are going to have environmental medicine look into that. Then they asked about our water supply. Public water pipes, but our house was built in 1901 and the original pipes are still here. They said for me to use a water filter that goes right on the sink, because all water needs to be filtered even for cooking. They said the water pitcher is not good enough. They question if he may have heavy metal poisoning. They may possibly test him for heavy metals.
The Neurologist resident looked over his 1st EEG that was done at Tufts. She said it was slightly abnormal. That was something to me! As far as everyone told me before they said it came out fine. She told me that a certain percentage of the population can come out abnormal. She asked if he had an MRI before. Nope. Then they talked more about the SPECT scan possibly happening instead or first. They questioned Fragile X. Neurologist said children with that don't typically present like he does. It's never been tested even when he had his genetics testing done because back then (2/2009) the Geneticist stated on her eval "Because of his normal speech and overall development with no mental retardation we do not suspect Fragile X to be a cause of his symptoms".
They questioned the possibility of his liver issues being related to genetics, weight related or environmental too. They questioned it more because his liver enzymes were lower when he was on the higher dose of Abilify. They said if it was the Abilify they should have possibly been higher. They told me no tylenol for his headaches at least until I hear from them. That leaves us with nothing for them. If they get bad I guess we will be calling the doc.
They mentioned everything from his birthmark, to some "Roles on his neck" to his ear lobes being fatty as possibly meaning something too.
I feel like we made leaps and bounds today in areas that nobody has ever researched with Honeybunches before. Oh yeah, they said to leave him on his current meds for now. One of them brought up the possibility of Geodon, but the others decided that it does not work as well as Abilify "In children who present like him" and can cause the same liver issues. So we got losts of "Possible"s today that I believe will lead to something good for my son. It was great teaching the students and they had some great ideas, as did the residents and docs. They did not come up with a specific plan as of yet. They want more time to discuss and go over his case because he is so "Complex". They said after they do that they will write me a letter with their findings and recommendations.
I will be anxiously awaiting hearing back from them. In knowing this hospital from our previous experiences there, it might take several weeks. Their reports are usually very thorough and informative though. This all sounds so promising!
Honeybunches appointment lasted the whole 3 hours it was expected to. We did not get out until a couple minutes after one. There was a commuter rail train scheduled to leave at 1:15. If it was just Honeybunches and I, I would have prefered to hang around the hospital, go get some lunch there as I know it was Vegan friendly, let him watch the ambulances, and just stay there wasting time until the next one came at 4:40. Nope, DH thought we should rush our way to the subway and to the train station trying to catch that train! We almost made it. It was pouring so heavy that we got drenched in just a couple minutes. The wind was trying to take off with our umbrellas just from the maybe 50 feet from the subway exit to the train station enterence. We were rushing, running against the rain. We ran our way into the crowded train station. The clocks said 1:17. The train was gone already!!! We were stuck there until 4:40 when the next one came. Honeybunches was happy to see the trains pull up through the 9 glass doors. DH was pissed off because we missed the train. He did a good job remaining calm, but I could tell by his body language he was beyond frustrated! Before we even left the house, the night before, I had told him that he should have stayed home. I knew it would be a long day and too many people for him. He mentioned that he should have.
After a while, I began walking around the station with Honeybunches because I got tired of sitting down. We walked in circles lol. Then we began examining possibilities for dinner. There was nothing Vegan friendly I could find, so when the rain slowed Honeybunches and I went for a walk outside. We walked up and down 4 city blocks. All I found was about 6 pizza places lol. Not what I was looking for as I was hoping for Spanish or Chinese so we could get some rice. Oh well. After about a half hour we arrived back at the train station. I got Honeybunches some fries and fruit snacks. (2nd one in a day. Bad Momma but I could not find anything else without cholesterol for him around there.) I was frustrated because I knew we would have been better off staying around the hospital. It's a more Vegan friendly area. The cafe there has Vegan/Vegetarian options and there is actually a Vegan restaurant right up the street. But no.... Dh was insisted we'd make the train that we missed. Rrrrr. Anyways, Honeybunches did fine for the rest of the afternoon and evening. Thankfully I remembered to bring his noontime med and evening meds.... just in case we missed the 1st train.
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