Another long delay in updating the journal! (We'll try and post some new pictures sometime, too!) We are thankful that Craig is now nine-years old and still pretty healthy (as far as kids with Mito go). Despite being sick quite a bit this winter, he did not have any huge declines afterward or need hospitalization at all, as so many kids with Mito do when sick. We are sure that the supplements and medications that he is on, which are many!, are really helping.
He does need to use his power-assist wheelchair (he wheels himself, but with the help of battery power) more than ever, since he is wobbly on a daily basis and tires easily. He shows signs of weakening in his torso and new pain in his back. He is also showing signs of some digestive trouble which will be his next round of tests.
He is reading like crazy, though, and still really "with it" mentally. (He definitely is a "special" kid when it comes to mental function, in some ways, but they make him the innocent, wonderful child that he is.) He is full of curiousity and great ideas, but his difficulty speaking and using his hands makes it so hard to get them out.
Fortunately, Craig's fabulous teacher consultant from Oakland Schools, Teresa Bitti, nominated Craig to receive a computer for his particular needs, and he was chosen (one of 22 kids, I think, in the county)! Jon Fouts, a student in the Computer Technology class raised the money and built the computer just for Craig- with monitor, printer, speakers, and even a sub-woofer! Thank you, Jon!
Through special software Craig can use the mouse to choose his letters from an onscreen keyboard, instead of trying to type each one on the keyboard. Word prediction software allows Craig to type much faster, as well, offering a list of words he may want to say before he types the whole word out. The computer is his to keep at home! He already has a laptop at school with similar capabilities, as well!
More good news- Craig is playing baseball right now with the Miracle League. Kids with any kind of disability can play on the specially designed field- walkers, wheelchairs and all. There are no strikes, no outs, and all smiles out there on the field. It's quite an emotional experience to go to a game. Go to Michigan Miracle for his schedule (he's on the Dodgers!).
Physically, our greatest goal right now is to make Craig as comfortable as possible with medications for the tightness from spasticity, new cushioning in his wheelchair, a new bed and special mattress for his back, etc.
Dave just got back from the Mitochondrial Disease conference in Atlanta. He returned with new determination to figure out the genetics of our disease and with the latest medical information and treatment options available. Thank God he was able to go.
Dalton, we are so happy to report, is doing much better since he had a tonsillectomy in February. It seems to have opened up his breathing for better sleep and oxygen levels at night (those were some huge tonsils!). He still struggles with being sick a lot, and has developed some disturbing tics- eye rolling and finger movements, etc. Fortuntately, an EEG showed that they are not seizure-related so we will just wait to see if they clear up. They can come and go with sickness or stress, even in children with no neurological problems. His overall neurological exam continues to be just fine :-), and he is a very intelligent child- advanced in both reading and math. He is really enjoying Karate lessons, and will attend a performing arts camp this summer. (He is as dramatic as they come!)
I (Donna) am doing well right now, thanks to the supplements and the medications I am on, particularly the ones for spasticity (tightness and cramping that were making it difficult to walk and sleep, especially). I am struggling some with mental function like word-retrieval and mix-ups, and memory lapses, which right now I just have to chuckle at and take in stride. (They really can be quite funny- wish I could think of an example for you right now.) I am also starting medication for attention deficit disorder which seems to come with the territory as well..
My energy level is not at all what it used to be and that frustrates the heck out of me, but I am learning to adjust. I am looking into options for help around the house and with childcare so there are less times when I basically just go "out of it" on the couch. It is scary, when I am alone with the kids and my body is tired beyond my control. I try to get something on tv for them that is healthy and will keep them occupied while I sleep it off. I have had to rely on my Mom (thank God she is next door!) many a time when I could not function mentally or physically, as well as my sister, in-laws and good friends. THANK YOU to you all!
Thank you, too, to all who remember us in prayer. We rely on the Lord for His constant love and faithfulness to get us through. His Word has been the glue, the source of hope and truth, that keeps us from falling apart. We look forward to a better world, free from all sickness and pain. This is just the before-life to the eternity we will enjoy with him and with each other!
On that wonderful note, Dalton will be baptized by our friend and pastor Steve Andrews, along side his Dad in July. So you see, we have MUCH to be thankful for when it comes to what really matters in this life. :-)
10/21/05
The good news is that Craig's MRI came out normal! (Mine was also:-) That is very good news, but the bad news is he shows signs of regressing still. We are going to try upping one of his supplements (magnesium orotate) to see if it helps.
10/10/05
I sure waited a long time before making this update! Craig was doing pretty well, holding his own anyway, until recently. He has only had a few seizures and no real emergencies, but his neurological exam is worse. He is having a new symptom called "sustained clonus," and his speech is more labored. He is very ataxic in every way on a daily basis (uncoordinated speech, walking, hand movements, etc.). It's time for another MRI to see if his brain shows any changes yet.
At the same time, I (Craig's mom) have been having several neurological problems as well. I was just diagnosed with mitochondrial disease. It often shows up in the mom later in life after one or more of her children have been diagnosed. Because we inherit all our mitochondrial DNA from our mother, if there is a defect in the mitochondrial DNA, all the children get it. It will vary in severity, however, from person to person (Craig is obviously the most affected of us all). It could also be inherited in other ways. The genetics of our disease are very unclear.
It seems our concerns for Dalton have been valid. His fatigue is probably caused by mitochondrial disease.
It is a difficult season of acceptance at the Hendersons. We continue to rely on the Lord to lead us through today and whatever lies ahead.
4/8/05
We started Craig back on seizure meds a couple weeks ago. It seems to be helping. He is still more tired and having more episodes of inability to stand up or walk than he's had in a long time, but no more seizures, so far. Thanks for your prayers.
3/25/05
I am so sorry to report that Craig's wonderful seven months without seizures or many other problems seems to have vanished in the past month. He is extremely ataxic (off-balance) and tired. He seems to be having some seizure activity and many episodes of loss of motor control. It's a mystery to us why this disease comes and goes as it does, but we have to roll with the punches. Please pray for Craig.
12/21/04
Merry Christmas and Happy New Year! Thanks for checking in on the Hendersons. We have so much to be thankful for this Christmas.
It's been almost a month since Craig came off seizure meds completely! He has shown no signs of seizure activity for 4 months now!
His energy level is consistently good these days unless he is sick. His hands have stopped tremoring so he is able to write and draw more than ever. He is doing very well in school, participating fully in second grade. He is reading at grade level! He has made a really remarkable improvement.
I suggest that anyone with mitochondrial problems give the supplement Magnesium Orotate a try to see if it helps them as it seems to be helping Craig. He is now taking 400 mg. a night. It is available at some health food stores and on-line (try www.evitamins.com). The only brand we have found is KAL.
We do not know what the future holds, but we cherish these days just enjoying life with Craig.
9/27/04
I have some very good news which I have waited to share, knowing how much things fluctuate with Craig. He is getting stronger lately! A couple days ago he actually ran laps for a fundraising event at school without any negative consequences! He would have left me in the dust if I didn't keep telling him to slow down so he wouldn't fall or run somebody over! (He did fall once and had to hold my hand for a short time, but he was so determined to keep running. :-)
He is participating fully in second grade. He uses a wheelchair now, which he absolutely loves because he can be independent for the first time. He doesn't have to worry about falling over or getting tired so he doesn't need adult help all day long anymore.
We have been able to lower his seizure medicine significantly and still no seizures in the past two months!
We did start Craig on a new supplement which we found out about at the United Mitochondrial Disease Foundation conference in early August. It is called Magnesium Orotate. He takes a 200 mg. tablet crushed and mixed in pudding, with all his other supplements every evening. We hesitate to assume his improvement is all due to this supplement, but it seems to be helping. It is supposed to work in conjunction with Co Q 10 as a pro-oxidant (if I'm getting it right!).
Thank God for this recent improvement, and thank you for praying and caring for Craig.
6/16/04
Craig continues to have more trouble than he has in awhile. He is weaker and more ataxic, and having some seizure activity. Time to try adding some more supplements. We have done everything the doctor in Cleveland suggested, and those things definitely helped (Co Q10, vitamin C, alph lipoic acid, vitamin B 2 (riboflavin) and his medications.)
It just seems like they are not doing enough for him anymore. We are going to experiment on our own within safe guidelines.
5/12/04
Wow, 3 months have passed since the last entry! Craig had a strong beginning of the year. He was sick only a few times this winter, and only mildly so, which is amazing at this house! He has been fairly strong. It has been refreshing to focus on Craig's progress educationally and socially and not so much his physical problems for a change.
The last couple weeks have been disappointing, however. There has been an increase in seizure activity, tiredness, wobbliness, hyperactivity and leg pain. We are hoping that an adjustment in his medicine may be all that's needed. He is growing so well, thank God, and the constant change in height and weight means adjustments to meds as well. He also has a chest infection right now, which may be causing some of the problems. Keep him in your prayers, please.
Please pray for Craig's younger brother Dalton as well as we investigate several physical problems he is having, all the time hoping that mitochondrial disease is not at the base of his problems. His EEG (brain wave test) was abnormal the past two times he has had it. We are awaiting bloodwork results. Thank you for checking in on us!
2/27/04
I'm sorry to be so slow in updating the website but, in this case, no news is good news. Other than a few rough spots, Craig is doing pretty well overall. The medications and supplements seem to be giving him more strength. He is less tired on a daily basis than he was, and although he still has some episodes of ataxia and seizure activity, they are more infrequent. I hesistate to say all this knowing how quickly things can change, but it's good to be thankful and hopeful that things are improving for Craig. :)
12/17/03
It's been a long time since an update! Craig is hanging in there. He is not horribly worse since the last time I wrote, but does seem to be more ataxic (wobbly) and still has some seizure activity here and there that we are trying to keep under control. He is more hyperactive and distracted than ever, and we just started some new medication to try to calm his body down. The constant movement combined with his instability is a real problem for him and those around him. Please pray that the medication would work for him with minimal side effects. Food seems to be the most important factor in maintaining his health so we don't want his appetite to decrease as it usually does with these meds. He also struggles with stomach pain due to his mitochondrial condition already so we don't want anymore of that.
We have a new, very troubling concern as well. Craig's younger brother has been experiencing excessive fatigue off and on for over a year now. He also complains of muscle pain when he uses his legs a lot. We are checking out every other possible explanation for his problems, and recently went through a new, more extensive, round of bloodwork. Since mitochondrial conditions are genetic and often present with fatigue early on, you can imagine our fears. We are trying to take it one step at a time and keep things in perspective.
Merry Christmas, Happy New Year, and thank you so much for checking up on the Hendersons.
10/29/03
This past Sunday was a bad day for Craig, but since then we have seen some real improvement. We upped his seizure medicine a little since he seemed to be having some kind of seizure activity. At one point his body became totally limp and his tongue was unable to form words.
Yesterday and today, however, he has been much stronger than he has been in awhile. He was able to walk to his classroom from the parking lot without assistance and without having an ataxic episode today. He did the same at the end of the day, and even ran back in to use the bathroom too! He has been more stable as well, with less falling.
A few weeks ago he started taking a new medication (really a pharmaceutical version of the amino acid carnitine, I think) called "Carnitor." It is a basic treatment for mitochondrial disorders. It can take weeks to start working in your body. Maybe it is kicking in? Let's hope so. Thank you for your prayers.
10/23/03
Craig continues to be more tired and ataxic than he used to be, but he has improved a lot since getting over being sick. He went to Harvard this week (his blood did, that is :) to participate in a genetic study. In the meantime, his muscle from the biopsy is being studied at another lab. We hope to discover the genetic origin of his mitochondrial problems, and exactly where the breakdown is occuring at the cellular level. The more we understand the nature of his condition, the more we can search for ways to treat it.
If you've never seen the movie, "Lorenzo's Oil," you should check it out. It is a difficult movie to watch, but it has a lot of hope in it if you stick it out to the end. Although our approach to Craig's condition is not exactly like the parents in the movie, it was an inspiration to me when I saw it last year. Craig was tested for the condition the boy had in the movie, and he does not have a leukodystrophy. There are similarities, though. Fortunately, Craig has not deteriorated as quickly and as much, so far. Can we find a treatment to slow down or even halt this disease's progression? Not until we know what exactly is going on in his body and why. Until then we are roaming around in the dark, guessing at solutions.
Genetic studies can take a very long time. Pray we get answers quickly, please. Thanks.
10/9/03
Craig was sick a few weeks ago, and has yet to fully recover his balance or energy. The ataxia became quite severe while he was sick. He is so much more tired than he was before the illness, but he has been slowly improving. Let's hope it keeps up.
He continues to have stomach pain on a daily, and now pretty constant, basis. We are still trying to figure out why and what to do about it.
He is also having trouble going to and staying asleep at night. This is very unusual for him and very detrimental since lack of sleep really effects him neurologically. We are hoping it is a temporary problem.
9/16/03
Craig started first grade, and he is doing very well. In fact, he has yet to miss a word on his spelling tests, and he knows them without studying! He gets tired, but he is lasting the whole day at school which is somewhat surprising. Fortunately, he has a fantastic first grade teacher and the ongoing support of his special ed teacher and parapro, all of whom love him A LOT.
Last week Craig had botox injections in his legs. It was painful, but he handled it like a trooper, as usual. We go back for the rest of the first dose next week. It should loosen the muscles in the back of his legs and his hamstrings which should help him walk better.
We just started a new medicine to see if it helps with the stomach pain he is having on a daily basis. We are also trying some new nutrients to see if any of them make a difference in his energy level.
Now that we have definite evidence, through the muscle biopsy, of a mitochondrial disorder, we will not proceed with the alternative treatment of chelation for heavy metals. We are in the process of testing for genetic explanations for his mitochondrial disorder.
We would appreciate your prayers as winter draws near that Craig would stay healthy. Last year our family had one sickness after another, and Craig was hit very hard. He was not responding to us and had very little energy to walk or talk for awhile. It was scary not knowing if he would fully recover. Please keep him in your prayers. Thanks.
For more information on mitochondrial disorders you can visit the United Mitochondrial Disease Foundation website at www.umdf.org .
7/30/03
No news from the doctor yet on genetic testing. I just wanted to update everyone on Craig's overall condition. The intense pain he was having a couple months ago has subsided quite a bit. He has some pain from the tightness in his ankles and hamstrings, but overall he is so much better. We changed to a medication called Trileptal about a month ago and after some intial adjustments, it is working well. He will start botox injections soon to help loosen the spasticity in his legs. They can be quite helpful.
/7/24/03
We just got the final results of Craig's muscle biopsy. It took a long time because he had an abnormality that needed to be rechecked. The pathologist detected the presence of ragged red fibers which are often present when there is muscle weakness and may indicate a mitochondrial disorder. The muscle will now be sent to another lab for analysis to determine what genetic defect is causing Craig's disorder. The results can take as much as a year or more since it's a lot like looking for a needle in a haystack. With Craig's history and symptoms the diagnosis of a mitochondrial disorder seems to fit. It seems we may finally know how to categorize his illness.
6/27/03
Believe it or not, we are still waiting on the full results of Craig's muscle biopsy, although it appears to be normal for the most part.
We have been pursuing some alternative treatments, with skepticism but willingness to try. We are starting something called chelation therapy to remove heavy metals from Craig's body. It doesn't really make sense to us that exposure to heavy metals like mercury, for instance, would be causing his problems since he has gotten worse over time without futher exposures (since vaccinations), but we are going to give it a short trial just in case.
We are working on getting Craig ankle supports to wear everyday called AFO's and a new walker, since he has quickly grown out of the one he has. (He's eating and growing fine!)
We are also trying a new pediatric neurologist and a new physiatrist who share an office and can work together to coordinate Craig's care. Both come highly recommended, and their office staff has the warmth and compassionate care we have been looking for.
For the next month, Craig is attending a special needs camp called SCAMP, and what a blast he has every day. He is also starting Special Olympics golf lessons. He has carried a club around the yard since he was two, and loves to swing (even if it means falling over afterward!). He is such a happy trooper.
5/7/03
Sorry to be so long in updating the website. Craig had a muscle biopsy last week. He is recovering well. There is only a slight chance the biopsy will give us any new information, but we decided it was worth trying. They took a piece of muscle from his thigh for testing and examination. It does not cause any long term damage since the muscle grows back, just temporary soreness in his thigh.
We obtained the results of the last round of bloodwork. Everything came out normal. He does not have any of the cerebellar ataxias or carbohydrate deficient glycoprotein syndrome.
We have pretty much exhausted conventional medicine's answers for Craig's diagnosis or treatment. After much thought and deliberation, we are going to see a medical doctor who can treat Craig with alternative methods. Say some prayers for him please.
3/27/03
Craig started using a walker this week. He really likes being able to get around on his own and uses it for balance while dressing or standing at the table eating, etc. I took him for a list of bloodwork last week and should have the results in the next couple weeks. His muscle biopsy should be in the end of April.
3/19/03
Yesterday we saw Dr. Jonathan Mink at Strong Children's Hospital in Rochester, NY. Dr. Mink is a pediatric movement disorder specialist and the Chief of Child Neurology for the Universtiy of Rochester Medical Center. He was very helpful.
Craig's gait has deteriorated quite a bit in the last few weeks, and when the doctor had him walk down the hall (as so many have before) he had a really hard time. Dr. Mink definitely feels Craig is ataxic, which means the part of the brain that controls motor coordination is impaired. Since this used to only happen episodically, no doctor has labeled Craig "ataxic" before. This opens up some other diagnostic possibilities, although none that fit Craig precisely or offer the hope of a treatment to halt the progression of his disease. Still, it would help if we knew exactly what Craig had so we could offer him the best symptomatic care.
We will have his blood tested for some ataxic disorders (a few have been tested already), and Dr. Mink feels a muscle biopsy would be very helpful diagnostically as well. I am working to arrange that as soon as possible at the Cleveland Clinic, which is the very best place to have a muscle biopsy, under the supervison of Dr. Bruce Cohen.
Dr. Mink could not determine the source of Craig's pain. It may just be that the brain is incorrectly perceiving pain where there is no reason for it. He recommends we continue the Neurontin to see if it helps. It seems like it might be working, although Craig did have a short period of intense pain at bedtime tonight.
Craig had a pretty good trip, despite being incredibly unstable most of the time. He watched tv in the car all the way there and back. :) We saw Niagra Falls for a few wet, cold minutes. He was fascinated by them, as I was! He was very happy to get home, especially when he saw that the snow had melted in part of the front yard. The first thing he did was run around in circles on the grass, so happy to see it again. He didn't even fall!
3/10/03
We saw Craig's neurologist yesterday. She started him on a new medication (Neurontin). We are hoping it will help, but without knowing the source of the pain it's hard to know how to treat it.. He did have a very good day today, but it's too early to attribute it to the medicine since his condition fluctuates constantly.
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