Medical Update and...SCHOOL!

Hudson has been seeing all of his doctors for follow ups since we've been back. He had an MRI of his left hip to check for arthritis in an effort to determine if that is what's causing his limp. No results on that yet. Today we saw his pulmonologist, and she isn't happy with his current sleep study results. The sleep study showed central and obstructive apnea, as well as high CO2 levels. She ordered an xray to check his adenoids, and if that's the problem, a simple surgery will fix it. If they're not the issue, she'd like to try Cpap on him. At this point I'm hoping for the surgery because I cannot imagine my sensory kid wearing a Cpap mask! We should know the xray results soon. She also suggested that switching to a J-tube instead of Hudson's G-tube may help with his stomach problems caused by the addition of purees. If we do this, we can still feed him purees, but his formula feeds will go via the J-tube directly into his intestines, bypassing his stomach altogether. This is something we'll discuss with his GI next Monday. She also wants him to see the developmental doctor at CMHH who specializes in autism. Hudson does have autism, but it is a symptom of mitochondrial disease for him. I don't think it would hurt to get a consult from her. 

Wednesday Hudson sees his cardiologist, where he'll get the always nerve wracking echocardiogram done so we can check on the condition of his heart. We never know what to expect going into an echo because it seems that there's always a surprise. Later that day we also have an appointment with a new cardiologist, one who specializes in autonomic dysfunction. His mito doctor is hopeful that this doctor will be able to offer a solution for Hudson's abdominal migraines, as well as his overall autonomic dysfunction in general.

 The really big news is that tomorrow Hudson is going to go to school! It will definitely be an emotional day. I know he will love it though. For the past two years Hudson hasn't medically been well enough to go to school, so he has received therapy and school services from the district on a homebound basis. This summer his mito doctor cleared him to attend school on the campus. He will be in the PPCD class, basically a Pre-K class for developmentally delayed children. The class is M-F, from 8 - 11. His therapists will hold their therapy sessions with him while he is at school. I am very nervous, but I do know that he's in great hands there. Medically, we will try to make sure he doesn't get sick often, and if he does, we'll have to discuss the risks vs. the benefits with his mito doctor. My little Huddy going to school! It will be a tearful, but happy morning tomorrow.

Back Home

I guess I was pretty bad about keeping the blog updated during Hudson's KKI stay. After the last post, things went downhill pretty fast, and a couple of weeks were spent just trying to get him back to the baseline he was at before the issues started. We left KKI a week early, because the team thought that Hudson had maxed out the progress he'd be able to make there developmentally. Upon discharge, Hudson was eating 15-20 oz. of purees daily, and we were able to cut his tube feeds by about 24%. We were not successful in transitioning him from the bottle to a cup. The question everyone has asked me is was it successful, was it worth the trip? The answer to that is really so complex that I can't just say yes or no. The reason that Jake and I thought we had to try KKI for Hudson was simple. He didn't eat, and no one could tell us why he didn't. From a quality of life standpoint, we felt we had to find out if, given the proper training and tools, Hudson would eat and maybe even love it in the process! So KKI was beneficial in the sense that we got an answer. Hudson hates eating. He will technically swallow purees, but he shows no sign of actually liking it, in fact most times he tries to get out of doing it. He points to his feeding pump to be hooked up to his tube feed. More importantly, food is wrecking havoc on his little stomach. This was my greatest fear when we started this process, would his body even be able to tolerate food? The reason Hudson is on a specialized medical formula, Elecare, is because as a baby his body was not able to break down and digest regular formula. KKI sent us home on a regimen of twice daily doses of Miralax, as well as enemas for him every few days. I find this a totally unacceptable solution. His reflux is terrible, his belly is very distended, and it is obvious his body is not processing the food well. We saw his mito doctor this week and she agrees we need to find a better solution for him quickly, but she wants us to consult GI before making any decisions. We see GI in a couple of weeks. I don't know what the end result will be, but I do know that we need to make Hudson more comfortable. This is not what Jake and I had in mind when we pictured a better quality of life for him. I do want to say that I feel that the feeding, speech, and occupational therapists at KKI are amazing. They got Hudson to do things that I never thought he would. I really do think it's a great program, and many children there made excellent progress. I think Hudson's underlying medical issues are the reason we didn't get as far, but that isn't anything the team could have helped. We also got the results of our Transgenomic testing back. They tested Hudson, Jake, and me, and we've been waiting for the results for almost a year. This test was searching for the genetic mutation that caused Hudson to have mitochondrial disease. It turned up many variants of unknown significance on Hudson, but nothing specifically disease causing. So this week we drew labs for another test called Exome testing. This test is much newer and can look for many more mutations than Transgenomic could. The results will not be back in time to give us any direction about testing for the newest baby Schaper, but I am hopeful that it will find the genetic cause of Hudson's mito. That is knowledge that would be very valuable to us. The next few weeks will be busy! Hudson has follow ups with all of his doctors, as well as an MRI, 24 hr. VEEG, echo, and an EMG scheduled.

KKI-Day 21

I am so excited to write this post! Hudson has done absolutely fantastic this week. At the steering committee meeting last Thursday, I was told that the team feels, after having worked with Hudson for 2 weeks, that he can be 25-50% weaned from tube and bottle feedings by the time we leave. Our discharge date was set for October 18. One of the big goals the team has for Hudson is to get him off that bottle, so they are focusing very heavily on cup drinking. If he learns to even drink his Elecare formula from the cup, they will consider that as counting towards the weaning goal, because it won't be intake by tube or bottle. So far he will let them put the cup up to his mouth, but isn't taking anything from it yet. Cup drinking is worked on in speech and occupational therapy. In feeding sessions, something finally clicked for him over the weekend. He closed his mouth and swallowed, at first taking several minutes to swallow but over the past couple of days he is swallowing much faster. This program is ABA based, so it relies heavily on a reward system for acceptable and desired behaviors. For Hudson, the reward is getting to watch a Mickey mouse DVD. If he doesn't swallow within 15 seconds, the DVD goes off. As soon as he does swallow, it goes back on. It sounds so simple, but it's something we have never been able to make him do. I truly believe the total immersion and excellent therapists of this program are the difference. So as much as I despise the inpatient stay, I think the value of the feeding program and therapies is immeasurable. He is on puree consistency, and the feeding team is placing the bite towards the back of his tongue, applying downwards pressure to elicit a swallow, with a Nuk brush. He isn't able to handle a spoon yet, the therapists said he doesn't have the proper tongue movements to move the food back yet, but they'll continue working on it. So far variety of food has not proved to be an issue, he doesn't seem to enjoy the food but also doesn't seem to dislike it. A new food is introduced every fourth session. So far he's eaten peaches, pears, green beans, applesauce, a blended up chicken nugget, mashed potatoes, and blended chicken and rice. All the food is blended to a smooth puree consistency. He is up to 2 oz per session, and they will up his intake a half ounce per every fourth session as long as he continues to do well. Today I was told that he is up to about 130 calories intake in feeding sessions, so we were able to cut his overnight feed down by one hour. On Friday he will have a texture assessment done to see if he can handle junior textures, like regular applesauce. He is doing awesome! After the misery of the first few weeks here, I can now honestly say that I see why this is the number one feeding program in the country. It's working!

KKI - Day 12

Sorry for the lack of updates. This is much harder than I ever imagined it would be, and I just haven't felt up to writing. We are very homesick, Hudson spends every evening watching videos of the kids, Jake, and Jakes's parents. But we're hanging in there. Thursday will be 2 weeks that we've been here, and it's also the day of our big steering committee meeting. During this meeting, all the therapists, doctors, social workers, everyone associated with Hudson's case will meet with me to discuss his progress so far as well as an anticipated discharge date. His progress to date has been very minimal, which makes this process so much harder I think. During his last feeding session today, the doctor assigned to his case sat in the observation room with me and discussed what he's seeing. He said Hudson is an extremely "tricky" case. They have succeeded in reducing some of his adverse behaviors to the therapists trying to feed him, behaviors such as hitting, kicking, or refusals. When the therapists are able to get puree into his mouth though, Hudson just sits there with his mouth open and doesn't swallow. He sat for 30 minutes today refusing to swallow one bite! This is the same type of behavior we see at home with him. It's difficult to stay hopeful that this whole situation will be worth it in the end, but I'm trying to stay positive about it.

KKI - Day 4

The past few days have been busy, but also feel like they've moved so slowly. Hudson's behavior has taken a dramatic turn for the worse, probably due to anxiety, stress of the new environment and people, boredom, and lack of sleep. His tantrums, hitting, kicking, and autistic behaviors are terrible, much worse than I've seen them in a very long time. After the few days of baseline testing, feeding sessions progressed to a toy preference assessment. The therapists presented him with a variety of toys, in a very methodical fashion, in order to determine what objects might work best as positive feeding reinforcements. After that was determined, the sessions have moved on to lessening bite refusal. The therapist presents an empty spoon to him, if he resists it, the spoon is taken away immediately for ten seconds, and then presented again. If he doesn't resist, he gets verbal praise and gets to play with a toy. This is repeated 30 times. So far, for the past two days, Hudson hasn't gotten to play with any toys. Tomorrow something different will be happening, but I'm not sure what yet. He also had one MRSA culture come back negative, and we're waiting on the second culture now. His stomach is a mess, rock hard and bloated, and his motility is at a standstill. He's been very retchy and gaggy, so the team added milk of magnesia back into his daily meds. He hasn't been on that since before the Cdiff nightmare of last year. We've met some of the other feeding families, and yesterday went to Port Discovery with them on our Therapeutic Leave of Absence (TLOA) hours. It's basically a giant hands on childrens museum type place, very cool. Hudson tried to climb into the water table. We actually get more TLOA hours than I initially thought, we get 4 hours twice a week. Most people take them on the weekends. Today we ventured out by ourselves to Whole Foods. After driving through a scary part of town, we arrived in Fells Point, where Whole Foods is. I was pretty proud of myself for navigating us there, only getting lost once! The change in scenery was essential for Hudson and I, as tomorrow marks the start of our first full week here. Wish us luck!

KKI - Day 1

A long long day. I feel like we've already been here a week. Stepping off of the elevators onto the floor, I have to admit I was greeted by an overwhelming sense of dread. It's just such a long time to be here away from our family. All complaining aside though, I DO feel like these people can help Hudson, which is what counts. Today consisted of a lot of intake meetings. Each day I am given a schedule with Hudson's activities on it. He will have feeding sessions three times a day, with therapy and playgroups scheduled in between. Tonight was his first feeding session, which involved Hudson and I sitting in a small treatment room, being observed by his team through a two way mirror. Uncomfortable, yes. They were observing his behaviors as they are at home, it was baseline testing. He'll have two more sessions of baseline, one session where they observe what reinforcements work best for him, and then Saturday morning the actual feeding program begins. The nurses, doctors, and therapists have all been great. They made an excellent effort to get up to speed on the nuances of mitochondrial disease before we got here, so I feel great about his care here. Since he did test positive for MRSA, we were placed in a private room, but as soon as he has two negative cultures we're kicked out into a shared room. I'm enjoying it while it lasts! He is allowed to leave his room, so not super strict isolation, but has to wear a gown and can't go into the playroom if others are in there. Thankfully they cleared one of the playrooms out today and provided him with a one on one attendant, so he could play while I went to meetings. His attendant noted three instances of reflux with formula coming up to his mouth, which everyone seemed unhappy about. I'm really hoping reflux doesn't delay his treatment here. That's about it for day one. I've been asked by several people for our address here, it is: Kennedy Krieger Institute Attn: 3rd Floor Nursing Hudson Schaper 707 N. Broadway Baltimore, MD 21205

Where has the summer gone?  I can't believe it's almost over.  On August 20, Hudson and I will be leaving for Maryland to be admitted at KKI.  I am so apprehensive about it all, but ultimately I do believe it's the best plan of action for him.  I'm just praying that the 8 weeks goes by very VERY fast!

Today I received the official sleep study report, and as I predicted, it was pretty bad.  Hudson's last sleep study a year ago showed central sleep apnea.  The current sleep study showed central sleep apnea, as well as a new finding of obstructive sleep apnea.  In addition, the pulmonologist noted a new diagnosis of periodic limb movement disorder, and is requesting additional bloodwork to clarify that finding.  Overall, his sleep efficiency was dismal, with a percentage of 60.9%.  The orders are to continue Hudson on nighttime oxygen, and get an immediate surgical consult with his ENT for a tonsil and adenoid removal to alleviate the obstructive sleep episodes.  We see the ENT next Wednesday for this.  If the ENT decides Hudson isn't a candidate for this surgery, then his pulmonologist wants to start him on nightly bipap.  We'll see what happens.  He will also be having an MRI of his hip to check for arthritis.  It's going to be a busy last week here!

Summer Update

It has been a very long time since I've updated about Hudson, sorry!  Honestly though, no news is usually probably very good news!  We're enjoying summer and Hudson is loving having the two other kids home from school.

There have been a few minor medical issues, but nothing too bad.  We recently learned that Hudson has developed osteopenia, which is basically a precursor to osteoporosis.  This is a bit puzzling to his doctors, and today his GI ordered a few tests to see if we can figure it out.  He thinks it may be caused in Hudson's case by an absorption problem, leading to a nutrient deficiency.  Hudson has also lost some weight, so his GI is ordering an elastase test to check for pancreatic insufficiency.  He has fallen below the failure to thrive mark again, so we need to figure out why.  We upped his tube feed rate as well in an effort to get more calories in.

The osteopenia was discovered on an X-ray, initially ordered to check for what could still be causing his left sided weakness.  At his mito follow up with Dr. K a few weeks ago, she noticed that he holds his left arm close as well, indicating weakness of his left upper side, as well as the persistent limp from his left leg.  Thankfully, his MRI was normal, so a stroke has been excluded.  He just completed an EEG last week to check for seizures, but no results from that yet.  The other interesting thing we discussed with Dr. K was his abdominal migraines, which don't seem to be responding to medication.  She has referred him to a cardiologist who specializes in autonomic dysfunction, which she feels the abdominal issue could be related to, in an effort to see if he has any new options or ideas on how to manage Hudson's autonomic dysfunction.

Hudson and I leave early August for the feeding program at Kennedy Krieger.  I'm very nervous about this whole endeavor but anxious for it to work!  His GI put my mind to rest today, because I keep thinking, if I just work with him hard enough, maybe we can be successful at home.  The GI told me that the treatment Hudson needs isn't safe to try at home, medical intervention is absolutely necessary.  I suppose this was the reassurance I needed to hear to know that this 2-3 month inpatient stay is what he really needs.

To end on a great note, Hudson was medically cleared by Dr. K and his immunologist to go to school.  No more homebound services.  Hudson and I have been together for 4 years now, it will be hard to let someone else be in charge of him for part of the day.  I know he will love being around other kids though, and that ultimately it is in his best interest.  IF he doesn't get sick!  That part does terrify me, and Dr. K said we won't know unless we try.  His immunology numbers have been pretty stable, and she feels we should give it a shot.  If he's sick all the time, obviously the plan will change.  

Hope everyone is having a great summer!

MRI

Tomorrow will be a busy day! Hudson's one sided weakness has returned, it has been ongoing for a few weeks now. Dr. K saw a video and is concerned about possible neurological changes, so she has ordered an MRI of his brain and spine, along with a 24 hr. EEG to check for seizures. We'll be at the hospital bright and early at 5:30. Please keep our little Hudson in your prayers tomorrow, this MRI is a long one and he'll be under anesthesia for quite a while. Thank you!

Recommendation from KKI

I hope this post doesn't sound negative, I really don't want it to. I am just utterly completely overwhelmed and unsure of everything after receiving KKI's final recommendation today.

We met with a team consisting of a doctor, a behavioral therapist, nutritionist, and a speech language pathologist. They asked us for Hudson's entire medical history, reviewed his records with us, and then the observation portion began. They watched us attempt to feed Hudson pureed baby food, and then watched him drink from his bottle. They watched a video I had made at their request of him being fed in his home environment. The doctor examined him, and then the team stepped outside to discuss their findings and form a recommendation. The entire evaluation took a little over 3 hours.

A little background on the program, there are 2 programs the team can refer a patient to if they decide treatment is appropriate. One is the day patient, the other is the inpatient program. Patients in both programs complete the same therapy Monday-Friday, but the inpatients have therapy Saturday and Sunday as well. Day patients get to leave the hospital at 5, and go to their homes/hotels, and are free for the weekends. I was REALLY really hoping they would refer Hudson to the day patient program, but no chance.

The team returned and said their recommendation for the inpatient program is based on Hudson's medical history and current feeding protocol. Since he takes no food at all right now, only formula, they want him to have therapy during the weekends as well. They are also concerned with his potential to decompensate rapidly due to mito, and they want his status monitored closely while they adjust his feeding/fluid intake. Inpatients are attended by doctors at Johns Hopkins. The team was pretty honest I think about their expectations for Hudson. They said they feel that they can get him eating, but how much or what of is very uncertain. Hudson has a history of being completely G-tube dependent when sick, and they said there's nothing they can do to change that of course. Ultimately the team said what his doctors in Houston did, we won't know what he or his body is capable of unless we try.

I am relieved that they think they can help him, even a fraction of an improvement would be huge for Hudson. I worry very much about the inpatient aspect of it though. We've done inpatient stays of course, but this is 8-10 weeks of intense therapy in a hospital when he isn't sick. Inpatients are given 4 hours a week of "leave of absence" to venture out into the city. The rooms aren't private, which is baffling to me, I guess good old Children's Memorial Hermann has spoiled us! I worry what being in a hospital for 2 months will do to Hudson, and to my sanity! The therapist reassured me that their days are extremely structured, in the hospital that is always the most challenging part when Hudson starts feeling better, keeping him occupied! I'm just overwhelmed at the thought of doing it by myself I guess, in Houston Jake is always there to rescue me. If it would be beneficial and improve Hudson's quality of life then I feel like we owe it to him to try. The wait list is 2-3 months, so a nurse should be calling us soon once a more firm admit date is worked out. Thanks for checking in on our little guy.

Cardiology Appointment

Today we received some not so great news.  Hudson had a scheduled cardiology follow up this morning.  He got an EKG and echocardiogram done as usual.  As I was looking at the echo being done, I just knew, and the dr. confirmed my suspicions.  When Hudson had his heart surgery done last August, the surgeon repaired his atrial septal defect and also his mitral valve prolapse, which had been causing mitral valve regurgitation.  At the time of his surgery Hudson's mv regurgitation was classified as moderate, he was taking a beta-blocker, and yet was still very symptomatic.  After his surgery the regurgitation was almost gone, it was classified as trivial, which is almost nothing.  This finding has been consistent up until January, which is when Hudson's last echo was at Stanford.

Today the echo showed the regurgitation has increased to be classified as the upper level of mild.  In a completely healthy person this honestly wouldn't be a big deal.  For Hudson, it's different, for one because it means that he is experiencing progression, and two, because it confirms to us that mito does indeed affect his heart.  Before his surgery Hudson progressed from mild regurgitation to moderate in just a couple of months, and we are terrified this could happen again, and ultimately progress to a more severe situation.  This time, there's no surgery to fix it.  His doctor today seemed discouraged, she reiterated that the surgery was done in the hope that the defects in his heart were "only" structural and would be fixed for good, and in the hope that they were not a product of mito, but that there were no guarantees mito wouldn't cause further progression.  I think today we realized that his heart is probably most definitely affected by defective cells because of mitochondrial disease, and the extent of what we'll be able to do to slow down progression will be uncertain.  For now we were instructed to keep a close eye on his energy level and overall behavior, last time when his mv regurgitation worsened he had minimal energy and his oxygen saturations were often bad.  Overall, a disheartening appointment, but I'll keep the faith that things won't get worse.

FIVE!

On March 16 our sweet Hudson turned five.  Five!  How did he grow up so fast?  It seems like the years have flown by.  My best friend's father used to say that in parenting the days are long, but the years are short.  This has proven to be so true.

This past weekend we had a birthday party for Hudson, thank you to all the family and friends who made it out to celebrate with us!  Hudson had a great time playing with everyone, and developed a huge crush on the bounce house.  Here are some pictures.

Hudson was terrified of the bounce house at the beginning, but with the help of some great buddies, thank you Kayci, Mason, and Alex!, he got brave and conquered it all on his own by the end of the party.

Cousin Brette giving Hudson a much needed Mickey Mouse filled rest break.

Mickey Mouse time :)

After the party, when the bounce house had been deflated, this was the sad little face we saw.  Hudson climbed on top of that bouncy and looked utterly dejected.  So we blew it back up and let him play some more!

We had such a good time, and I'm so thankful to everyone who celebrated with us and helped make Hudson's day special.  His birthday is always very bittersweet to me, and a time for reflection, because although it is such a happy occasion, it is also a reminder that birthdays are not always a guarantee when it comes to this disease.  Two years ago, a week before Hudson turned 3, we were told that he had a progressive, degenerative, incurable disease.  That birthday was a blur to be honest, as was much of that first year post diagnosis.  Two years out now, I can say that I feel more settled with the unknown, it will always be the unknown and I can't make it go away.  So I have tried to focus on making Hudson's today, his present, be as good as it can be and I hope that I'm succeeding.  I think he had a great time at his birthday party, his smile lasted all day, he played with his friends, and it is a memory I'll treasure forever.  Thank you!

Kennedy Krieger

Monday we had a very informative appointment with Hudson's GI doctor.  First, we discussed the issue of the abdominal migraines.  He said he has three treatments that he resorts to for this problem.  The first, Elavil, Hudson is not eligible to take due to one of his heart conditions.  The second, Periactin, Hudson has had a paradoxical reaction to in the past, extreme irritability and a blood disorder.  The third, Propranolol, is a beta blocker.  The main issue with this drug is that it would lower his heart rate.  His GI said that as long as it was cleared by his mito dr. we could start it and hopefully prevent the abdominal migraines from happening.  His mito dr. gave us the ok and so we'll start it.  Hopefully this will prevent Hudson from having the terrible abdominal migraines without having to resort to traditional migraine medications.

The big news of the appointment was that his GI was so impressed with how awesome he looks from being on the clinical trial drug, very attentive, focused, curious, etc., that he feels now would be a good time to transition into a feeding program.  The issue of an intensive feeding program has been brought up to us before.  Hudson has had multiple feeding therapists in his lifetime, all have said he needs an inpatient feeding therapy.  We discussed it with his mito dr., and at this point, she feels we have nothing to lose by trying.  We don't know why Hudson doesn't eat, but he never has.  He is extremely orally aversive, taking only medical grade formula in a bottle by mouth, and supplemented the rest by G-tube.  He has awful reflux, and I believe this played a major part in his oral aversions, but he has since had two Nissen fundoplications, so the reflux, in theory anyways, is being controlled.

His GI's recommendation was to enroll in an intensive feeding therapy program, either in Cleveland or in Baltimore at the Kennedy Krieger Institute.  We have researched both extensively and feel that KKI is the most promising option.  So Jake and I have decided to try this for Hudson.  We feel that we have to.  If he could eat food it would be life changing for him, socially and nutritionally.  We don't even know if his body can physically tolerate real food, but as his mito dr. said, we won't know unless we try.  The program is intense, 8 weeks of feeding therapy everyday.  Hudson and I would have to move to Baltimore, Maryland.  The GI submitted the recommendation today.  The first step is an initial evaluation in MD, and then beginning the program.  KKI has amazing success rates, and we are so hopeful.  Although the logistics of working this out seems impossible to me, the payoff if it works for Hudson is greater than all the difficulties having our family split up presents.  Please pray for guidance for Jake and I during this process, and for success for Hudson if he gets accepted into the program.

Abdominal Migraines

Each year that has passed we have seen more symptoms pop up in Hudson.  It seems 2012 is not going to be an exception.

For a long time now Hudson has dealt with mysterious abdominal pain, episodes that are very intense and last anywhere from an hour to all day.  They come on very suddenly, the only warning sign we have that one is coming is that Hudson gets very restless and agitated.  He becomes extremely pale, retches violently from nausea, is intolerant to his feeds or fluids, is lethargic, has cold sweats, cries, and alternates between curling up into a ball and moving around trying to get comfortable.  Afterwards he is extremely tired, but eventually he returns completely to normal.  He has been worked up thoroughly for gallbladder and other intestinal issues, but everything always seems to come back within normal limits.  When he was diagnosed with Cdiff last year we thought maybe that was the cause of the pain, but he has had 3 attacks since clearing the infection.

During a routine pulmonology appointment on Monday, he was having a very bad attack, this particular one lasted about 6 hours.  His doctor was very worried with how bad he looked and sent us over to the hospital for a KUB and other X-rays to see if there was a blockage in his intestines.  The results were clear.

The next day we had a routine appointment with his mito dr.  I don't know what it was that made her think of it, because we have been trying to figure these episodes out for over a year, but after describing his latest attack from the day before, and her reading of the notes, she said she thinks he's having abdominal migraines.  These are a variant form of traditional migraines, except instead of causing intense pain in your head, they cause intense abdominal pain.  There is not really much treatment for these.  If we see him starting to have one, we're supposed to give him ibuprofen, and unless they start becoming much more frequent she would like to stay away from the more heavy duty meds.  When I got home I read about abdominal migraines, and Hudson fits literally every symptom, so it feels promising to finally have a diagnosis for what he is suffering from.  Like most symptoms of mito, there are no clear cut treatments or ways to fix it, but at least we know what we are dealing with and can move forward with knowledge.

Update

It's been awhile!  I guess an update is long overdue.

Hudson has been doing pretty great.  He completed his EPI-743 trial in January.  We went to our follow up at Stanford with Dr. Enns, and he was amazed with how great Hudson looked!  He explained to us that the outcomes he is seeing out of the emergency treatment trials so far are not progressively upwards trending the entire time, rather they are an up and down or up and plateau type response, but at this point, EPI-743 is the most promising thing we have!  Pending approval from his cardiology appointments, Dr. Enns elected to keep Hudson on the trial medication, which we were hoping for and are thrilled about!  About a week after returning home, we received word that his heart studies looked great, showing no progression for the time being, and we were finally cleared to continue the clinical drug.  This is a blessing and we are truly thankful.

Hudson caught a respiratory virus that landed him in the hospital last week, honestly I haven't seen him that sick with a bug since he was about 2 years old.  It was quite scary, and I'm glad he seems to be over the worst part now.  As much as I hate being in the hospital, I am glad it is there to help Hudson through the tough times.  Thanks everyone for your prayers and thoughts.

Also, A BIG THANK YOU to everyone who came out for the big Team Hudson/Team Trace fundraiser!  We are so blessed to have such amazing friends and family.  We were able to turn in approximately $33,000 to the United Mitochondrial Disease Foundation, which is an incredible and humbling feat.  Such an event would never have been possible without the support of this wonderful community, and for that, we are eternally grateful.

Please please keep sweet Kyle in your prayers.  He is a child suffering from mito in the terminal stages of this awful disease.  He has fought a long and brave battle, and is an inspiration to so many.  Thank you.