What follows was written by Val, the mother of the patient I mentioned in the last blog. I am posting it, at risk of being criticized for self-promoting, because it says some very important things about how to get better. That doesn’t mean you have to come see me. Everything I am doing is public information, simple and safe. I want to thank K from the bottom of my heart for her generosity in sharing her experiences. Here’s Val…
Well, I’m the Mom of the young patient Jamie just treated for the month-long intensive. I’ve been intending to blog about “treatment with Dr. Jamie” since we flew to Hawaii last September to see her, but now I’m feeling an urgency to share the experiences, and I have my daughter’s permission to talk about all of it.
Before I go into the details, the most important thing I want to say here is that if you have a child or young adult with the MEICC or fibromyalgia or OI/POTs diagnostic symptoms, don’t mess around with your GP or family/primary care doc or even the docs you find who at least “believe” this isn’t psychiatric. Go see Jamie or find a doc who will work with her, if you can possibly afford it. Her shit works. We don’t know if it can stave off the worst of the debilitation that this disease devolves into, but if she’d been able to practice and I’d had sense enough to get my daughter to Hawaii to see her 10 years ago when she first got sick, I strongly believe my daughter would have been saved from years of misery. And, in the end, we certainly paid more on useless Dr.s, treatments and supplements during that 10 years of fruitless searching than we would ever have paid if we could have just gone to see Jamie in the first place. That’s my main message. The rest is details.
Background
My daughter, K, had symptoms from birth. She had major colic that prevented her from sleeping for more than 2 hours at a time from birth to about age 4. Constipation was a huge issue, including fissures from age 4 onward. No celiac, no detectable allergies, no Crone’s diagnosis, just on-going poop misery. Sleep has always been impossible. In kindergarten, she was diagnosed as having ADD without the HD. Tutoring taught her to read during first grade and she’s always tested ‘way above average on scholastic aptitude tests since, accompanied by – lol – Harvard-level grades and excessive success on other achievement measures, blah blah, until she started getting really sick in middle school. (For those who aren’t ME/CFS-knowledgeable, high achievement used to be a hallmark “symptom” that was seen as contributing to the psychiatric evolution of this “stress-related” disease.)
At age 10, she needed an emergency appendectomy. The surgeon was drunk and didn’t close the one artery that feeds the area. Consequently, she needed another emergency surgery about 8 hours later as well as a massive blood transfusion from stranger blood. Who knows what was in it, right?
She recovered from the surgery, but suddenly developed migraines out of nowhere 1.5 years later, about the time of the onset of puberty. And I should also mention that we put all our kids through the remainder of the “required” vaccine regimen we’d avoided until then, when she was about 12 years old.
Migraines and dizziness started at age 12. At 13, the migraines were bad enough that she started missing a lot of school. By the end of 8th grade US, she’d developed a “status migrainus” that lasted for over a month (with total misery, puking, etc.) and which wasn’t touched by any existing migraine meds, amitriptyline, or any other meds except tramadol injections. Our PCP finally decided to admit her to the hospital at the end of 8th grade to monitor her while he administered ergotamine, an old-fashioned migraine med with potentially scary side effects, for 3 days and other meds (including morphine), and that finally kicked it.
She was OK over the summer and into the next school year. But at the end of October, she developed horrible pain in her neck and upper back, as well as more dizziness and continuing migraines, and OI symptoms, too. Our doc finally diagnosed her with “fibromyalgia.”
She just got worse from there. It was as if this disease systematically attacked every bodily system in succession. There may be a consistent order to the progression, but I’m not aware that anyone has studied and documented it. She learned to avoid the migraines, but the pain became ascendant, which continues to the present. Her gastro symptoms got much worse and she gained 40 pounds for no reason, then developed intractable nausea and lost 60 pounds for no reason. All of her hormones went out of whack. Hypothyroid, no androgens, no DHEA, blah blah. Total fail on blood pressure regulation, totally frightening unpredictable fainting events. And then the cognitive symptoms arose and she stopped being able to get online to do college courses, let alone for social reasons. I’m sure I’m forgetting some symptoms that went haywire, too, but these were the worst. She’d become completely bedbound by age 18, but by about age 22-23, she was also completely unable to even handle computer time.
We saw many, many docs and alternative-type healers. About age 17, she bailed out on the alternative types and said she wouldn’t try any further treatments that weren’t documented in at least one peer-reviewed paper published in a mainstream journal. (I kinda don’t blame her. She had a jello cake for her 16th birthday while she was doing the low-carb diet.) She liked acupuncture for the pain, but the analgesic effects only lasted a few hours.
So, we succumbed to mainstream medicine and she ended up with 8 daily meds and some 20 others for “as needed” symptoms. This stabilized her, but at what a miserable level. She had no brain, no energy, still had massive pain, and still no hope. Like everyone else, we were watching the HGRV research closely, as well as Jamie’s and Ali’s progress on the ARVs, but weren’t committed to this hypothesis until we saw more evidence. It’s still the causal hypothesis that makes the most sense to me, and there are MAJOR clinical reasons to go there, but we just weren’t there yet.
Crisis
What pushed us over the edge to make the investment in going to see Jamie in Hawaii was a stupid cow of a nurse in our pain-management’s doc’s practice here in DC. We’d moved K’s care from our small town doc in PA to a pain-management specialist in DC a few years ago. We’d agreed with our PCP up in PA to try long-acting opiates to control the pain about the time K was 17 and we were otherwise trying to see if she could live alone with a nurse’s aide for about 5 years. But it turned out that she just needed much more care than an aide could provide, so she moved here to DC, where I work during the week, to live with me about 3 years ago.
The doc down here in DC had newer ideas than our PCP up in PA, but all his tricks also stopped working and he wanted K to go up on her opiate doses, which she already knew was a path to nowhere. We somehow ended up in his office talking to his nurse, instead of him. She was new to a pain practice, had attended a 1-day seminar on drug abuse, and absolutely flipped out about all the different meds K was prescribed. All by herself, this nurse decided that their practice couldn’t continue prescribing for K unless she saw a psychiatrist specializing in ADDICTIONS, because, obviously, my daughter is a drug-seeking junkie dope fiend trying to manipulate their practice into what? Giving her enough drugs to sell on the street? Which we’ve obviously been doing for the past 10 years, right? And then, when we met with the doc, he went on and on about how special K’s case is, how we shouldn’t have ever seen his nurse (umm, why didn’t his office staff know this?), how grateful we should be that he’d deal with K’s many and complex needs (like that’s our fault, right?), and he never once apologized for the massive insults to our integrity that his ignorant cow nurse inflicted on both of us.
I was beside myself with panic and fury. The last thing K needed was to see an addiction PSYCHIATRIST, who knew nothing about ME/CFS/FM except probably the crap that the CDC publishes on their website, would try to make HER responsible for her disease again, chalk it all up to drug addiction, and otherwise visit another set of attacks on her self-esteem with no path forward to getting better. I emailed Jamie because I already knew her as another Mom of a kid with this disease who I knew had gone through similar insults and stupidity. And when we talked (bless her, her immediate friend response was “call me”), it was just obvious that she was in a place to take on K, including all the drug-fiend complications, and might have wild new ideas, based in research, that seemed to be working for her and Ali and could maybe work for K.
Fast Forward
As my facebook friends know, K and I flew to Hawaii to see Jamie last September. It was a HUGE effort for K and she was a mess because of it. But before Jamie did any kind of treatment, just getting together with her and talking over all the crap we’d been through was healing in itself. I loved it that I didn’t have to explain anything we’d tried. Jamie already knew about all of them and just nodded. K loved it because Jamie treated her just like I do – with the tenderness and care of a Mom – but with the massively more important set of skills of a Dr. , and, amazingly, one who knows how much a random touch can hurt, let alone standing up against a wall for 5 minutes. As we all know from her blog, Jamie is a firebrand on our behalf, god bless her! But, in person with a patient, she couldn’t possibly be more gentle, nurturing and sweet, let alone smart.
So, she changed K’s meds all around and is still in hot pursuit of treating K’s hormones. One of the most effective things she did was prescribe the high-flow oxygen. Since K started using it, her pain levels have decreased and she’s just stopped fainting. Once we finally got it together to have the oxygen tanks delivered here in Nov or so (it took a while to deal with my insurance), K has fainted only a couple of times, rather than the 3-4 or more times/week previously. And her overall pain levels are massively down.
Jamie also encouraged us to believe K’s personal experience that the opiates had simply lost their effectiveness. We all discussed what K’s Dr. here was saying, which was that she could go up in her dose levels for immediate pain relief, but agreed that it would only work for a while until she built up a tolerance to the new dose level. Jamie said K could go off the opiates and not feel any more pain than currently, but would achieve the secondary gains of not being labeled as a dope fiend and not having to worry about withdrawal if something happened that she couldn’t get her patches or pills for any reason. So, K started slowly weaning herself off the opiates after that Sept visit and it turned out Jamie was right – the pain was the same, the high-flow oxygen helped it as well as the OI/POTS symptoms, and…on the very positive side, we all rediscovered K’s massive brain.
Jamie also took her off Lexapro and got her started on Deplin last fall for depression. Last year (winter of 2010), K was a hopeless emotional mess. Some of you on MECFSforums know how scared I was about how depressed and borderline suicidal she was feeling. The combination of Jamie, the pain-relieving, anti-fainting and brain-improving effects of the oxygen, and the Deplin have absolutely turned the mood problem around. Since Sept, as every month went by, K laughed more, talked more, read more current events, and has absolutely recovered her passion for politics. She was once going to become a lawyer and run for political office…
The Month in Hawaii
The main purpose of spending the past month in Hawaii was to get K off as many of her current meds as possible. Jamie wanted her to be in the hyperbaric chamber and do neurofeedback, on top of the continuing high-flow oxygen, while she detoxed. It just really worked. Getting off that damned pain patch turned out to be nothing – 2 days of mild discomfort. And K was able to cut her daily oxycodone pain pills down by 2/3rds and completely dumped one of the benzodiazepines she’d been using for sleep.
We all got overconfident because this was going so well and K decided to stop her Lyrica cold-turkey. Considering it’s supposedly non-habit-forming and others have done well stopping it cold, we expected she’d be fine. Wrong. She was miserable and it taught us, as getting off the opiates had, that Rome was neither built nor fell in a day and we had to deal with this one slowly, too. Once she re-started it, she was again great, so the lesson learned is that K needs to go off it as slowly as she went down on her opiate doses. And now she’s doing fine with the smaller dose decreases every few weeks instead.
But, get this – while K was dropping meds and doses left and right, and should have been miserable, she was doing unbelievably well. I think we only cancelled 2 appointments over the entire month because she was feeling too bad to go vs. the 3-4 re-schedules we’ve often had to do for Dr. and dentist and other appointments over the past 10 years. And, other re-schedules were simply because K wanted a day at the beach instead of sweating it out in the hyperbaric chamber (it gets really hot in there) and we all agreed sun and water would be more healing. For a bedbound person, it was astounding to see her snorkel and swim with such joy, go out for dinner, watch her chasing scary bugs around the place we were staying, talk and laugh and engage, and overall enjoy life in a way we haven’t seen and she hasn’t experienced in years and years.
We travelled 16 hours to get back to DC last night. It was awful for all of us. K isn’t doing cartwheels today, but she’s also not curled up in PENE fetal position. In fact, she’s voraciously catching up on all the political TV coverage we couldn’t watch in Hawaii.
Going Forward
Hell, we don’t know. I’m pretty sure that if we only stopped here with oxygen, hyperbaric and Deplin, all these gains would fade over the next 2 years. Jamie has more tricks up her sleeve to get K’s hormones normalized, work on her blood sugar, and fine-tune this and that. And those things will surely lead to more progress.
But, what’s the disease-causing mechanism we’re fighting here? The treatments so far are basic healthcare and tweaks based on Jamie’s clinical intuition (oh, gee, we get dizzy and have pain – maybe our tissues aren’t getting enough oxygen!). But Jamie and Ali are continuing to improve on ARVs. Dr. Snyderman’s results are also incredible. If K continues to improve and stabilizes at a better level than she’s experienced since she first started getting sick, is there any reason to NOT try ARVs? I don’t think so. Jamie isn’t talking about this, but I am. Stay tuned.
And, in the meantime, parents, get your sick kids to Hawaii immediately. Do what Jamie offers now – it could make the difference between graduating from high school or college vs. having to do all that delayed or not at all. Save your sick kids some misery. The benefits may not last. We’ll see. But, these have been the ONLY treatments over the past 13 years that have had any clear, unequivocal positive results. Seriously, if you can’t get to Hawaii, get your Dr. to read her blog, join the forum, and consult with her. If only she’d been in practice when K began getting so sick…
Hey, I feel pretty good!
Wow! That almost brought me to tears while at the same time made me so mad and frustrated. I’m so glad you were able to get to Hawaii and get the help and treatment your daughter so desperately needs.
I am hoping and praying for continued improvement.
Thank you so much for sharing your daugther’s story!
Val, it is very kind of you to share your experience and your daughter’s experience on Jamie’s blog.
Just seeing the pictures would want me to take a sick child to Hawaii if I had one. It looks like paradise.
I know it must have been hard to re-live everything to write this, but you did excellent work here. Thank you, Val.
Thank you both for the kind comments, and you, especially, Patricia, for the moral support during that dark winter when K was so depressed.
I didn’t mention it in the blog post, but I should also say that K has had counseling/therapy off and on over the years, lest anyone think we haven’t addressed the emotional/mental health hypothesis as well. Repeatedly her therapists have told us that she’s about as well-adjusted as a young person could be who has lost a “real” life and is coping with unremitting pain and other limitations, and that there was no evidence that the illness had a psychogenic origin. Obviously, CBT and talking therapies didn’t heal her either, but the therapists who have worked with her at different times over the years were very helpful in other ways. For example, the first therapist she saw relatively early in the illness just excoriated me for not allowing K see friends in the evening if she felt like it on a day she hadn’t been able to get to school (my general rule with all the kids) and encouraged me to do what I could to make K’s bedroom a pretty, comforting place and ensure she had access to tv, books, movies and anything else that might distract her from the pain. I hadn’t realized at the time how serious this was and was going to continue to be (the therapist had worked with other young victims of the disease before and recognized how important it is to maintain social relationships) and hadn’t thought of the latter (yes, brainless). I’ll be forever grateful for that advice. I’m mentioning this to correct any impression I created with my anti-addiction-psychiatrist rant above that we’re opposed to counseling as a helpful treatment adjunct. It’s simply not a treatment for the illness itself.
Val
Val’ as a fellow ME/CFS sufferer its thrilling to hear how K’ is doing and improving. Thank you for writing. Have experianced the consistant benefits of Oxygen Therapy with Oxygen Concentrator. Never done neurofeedback or hyperbaric chamber. How do they work / assist ? I understand the philosophy of hyperbaric chamber from a Sports Science application. Does hyperbaric chamber help wit heavy metal detoxification? Is the neurofeedback you talk about like the ‘electrical stimulation’ that Dr Terry Wahls utilises in her ground breaking treatments of secondary progressive multiple sclerosis (MS) coupled with ‘intensive directed nutrition’ ?
My morning is brighter due to what you’ve writen.
Thank you Val’, Thank you Jamie, good on you K’
Cheers Al’
Hi Al,
I’d rather Jamie discuss her views on why the HBOT is so helpful and the type of neurofeedback she’s using. Glad to hear that oxygen has helped you, as well.
After these experiences, my unscientific, untrained intuition has me wondering how much of the pain, fatigue and other dysfunctions are related to long-term, slow oxygen starvation. My son put it together that it makes perfect sense K responded so well to the HBOT, given how low pressure weather systems have always substantially increased her misery. But, if these two means of increasing the oxygen available are addressing the same problem, what’s the mechanism? The Vanderbilt POTS research and other recent studies documenting cardiac dysfunction in ME patients may be a clue (yes, K has also had a cardiac workup with, as usual, no apparent abnormalities). Or, of course, it could be something else entirely (mitochondria?).
It’s seeming to me to be a missing piece in the puzzle of supportive therapies. Staying hydrated has always been key for K. Watching her food/nutrients closely has been another. In retrospect now, trying to make sure she has enough oxygen circulating is seeming like a no-brainer, too (thank you, Jamie).
Wouldn’t it be nice if there were clinical trials and research to get this out of the realm of one-off anecdotes?
Best wishes.
I’m exactly the same re hydration too. I carry water with me everywhere I go. I have Sjogrens Syndrome too and leaky gut but water is essential. I have to suppliment Magnesium and Potassium because water washes both of them out on to of a damaged magnesium and potassium chanelopathies. Minirin Nasal spray somehow helped the loss of Magnesium and I get fewer cramps. Last year was tested for cardiac dysfunction and they found 4 dystolic heart abnormalities the main one being in the ejection fraction. Professor de Meirleir saidit in 100% of his European ME patients “Its what the virus does to the heart muscle”. de Meirleir and Lewis wrote a really interesting paper about d-Lactate http://iv.iiarjournals.org/content/23/4/621.full
which is linked to a damaged magnesium chanellopathy (basically the right amount of magnesium washes out d-Lactate increases), so this may be how oxygen is working.
Val, thank you for sharing so many details. This is a heart-warming story. I send many blessings to you and K for continuing and rapid improvement.
This is such a good post. For one thing, it makes me feel better as I can relate to a lot of the symptoms. I don’t know how your daughter traveled. For me a cab ride more than 30 blocks is nearly impossible for me. Going to see people 45 minutes away in a car is reason to panic.
It’s very brave of her to travel and then do everything suggested.
I am so glad to hear she feels better and that many of the treatments helped.
And I’m also glad to hear that she’s off a lot of the medications.
I don’t have too many options in this as so many medications adversely affect me. I just had to stop taking one of my sleeping medications as it caused a rapid heartbeat. Now I’m barely sleeping … the dilemma of this disease.
But it’s good news and I hope your daughter’s progress keeps up.
And, yes, social isolation is a very big problem. She has to see, phone, email, IM, tweet, and whatever else, her friends. And if she has Skype, even better. She can see them and they, her. All of the communication and socializing is crucial.
It really is. To be socially isolated increases the angst so much.
It’s great that she has you, a supportive parent.
Thank you so very much for sharing!
Val when was K diagnosed with ME? I couldn’t see it mentioned in your narrative above and I was also wondering what medications she has found she can’t do without given that the Oxygen therapy appears to have reduced her dependence on those others you mentioned. Thanks.
Hi Jack. Not sure where you’re from, but Dr.s in the US aren’t familiar with and don’t use the term, “ME.” So, our Dr. in PA first used the label, “fibromyalgia,” with us when she was 14, but I noticed he always wrote “FM/CFS” in his letters to the school or referrals to specialists. She meets all the current case definitions, including the MEICC, unfortunately.
I’m not sure we’ve identified meds she can’t live without yet, as we’re only a few months into the detoxing process. In terms of daily meds, she may decide that lyrica has been helping enough with the pain to warrant staying on it at some level. She has dropped one benzo she was using nightly for sleep and is going down in dose on the other (apologies for not remembering which ones) and still getting to sleep, but the jury is still out as to whether she’ll be able to get off it altogether. Interestingly, she has had no withdrawal symptoms from cutting down on the benzodiazepines, which are supposed to create physical dependence. Of course she’ll need to continue the thyroid med and other hormones, unless all that magically straightens itself out at some point.
There are several I’m guessing she’ll continue to keep around to use PRN. I suspect she’ll keep an oxycodone prescription available for times when she has to be physically active. I’m positive she’ll also continue using levisin, which she needs 2-3 times/year, for occasional intense bouts of IBS symptoms — and a daily dose of yogurt, which is generally effective in staving those off. She’ll also keep a script for fioricet available, in case she doesn’t catch an incipient migraine in time. Like everyone else who’s had this long-term, she has developed a set of self-care regimens to manage some of the symptoms, but they occasionally fail for apparent or unknown reasons and both levisin and fioricet have been life-savers. I’m not remembering what else she has in her medicine bag for similar situations at the moment.
Kathy D., I hear you on plane trips! They are the worst torture for her. Over the years, there have been countless times we’ve had to reschedule flights, either going or coming or both, because she just couldn’t do it. In fact, when we flew home from seeing Jamie last Sept, we got stuck in Seattle for 2 extra days before she could get on the plane to finish the trip back to DC. (Luckily we were staying at Grandma’s.) And last summer, she got stuck in CA for 2 extra weeks on a trip she was determined to make for her nephew’s first birthday.
Like many with this, there have been times that just getting from her bed to the bathroom is nearly impossible, let alone getting from her bed to the couch, into a car, and forget getting on a plane. There have been several periods, usually in winter, when she didn’t even try to stand up and would just crawl to get to the bathroom. And if she did make a plane trip, the travel, in combination with the extra stimulation of seeing family and trying to do more than she can handle, would send her into a PENE crash lasting a month or more afterwards. I remember one 3-month-long post-trip crash. Her experiences have been so bad that she has nightmares now before trips, not surprisingly. So, it’s quite astounding how well she handled this trip and very nice for our pocketbook that we didn’t have to reschedule any of the flights for once. She had a day or 2 of mild PENE after we got there and some this past few days. But nothing compared to earlier times.
Val
Thanks Val. I am Firestormm on MECFS Forums btw.
Thankyou very much for sharing your story. And I wish K all the best.
I wish we new what causes the relapses.
Sometimes it is doing to much.
But sometimes they come out of no where.
What a story. My heart goes out. However, I wish you had gotten in touch with the National CFIDS Foundation. The mother of a child in my support group found out how to totally stop the migraines for her daughter and so much more from them. Give it a try. It may help!
Vickee
April Fools, right?
@Val- Thank you so much for sharing! I’ve shared on MEcfsForum, so I know you know I got sick at 17 and 27 1/2 years later, I’m in a dark room with fans on, drinking water and surviving. My munchkin is in preschool, so I get a bit of a break now. Unfortunately, it’s in the morning, which is the equivalence of me dropping by a non-ME/cfs person’s home at 1:30 am and shaking them violently awake, while thrusting chores and business and ADL’s at them while shouting how they need to do this and this and that! So, I stay in the dark so I can survive, until I pick her up and get to live again. Because she makes me live, not just survive.
Thank you for everything you said; thanks most for sharing what a supportive mother does and should feel when faced with this disease in their child.
@Patricia- Thank you, too, for helping Val during those darker times. Everyone should know that Patricia is an amazing women who has been there for me, too, during the difficult pregnancy with my second child, and then again after her tragic death at 3 1/2 months old.
@Jamie- You know who I am, of course! Because you have also been there for me. I’m wondering if I shouldn’t see if my doc, a smaller player but still- a somewhat known doctor in the ME/cfs world, might be willing to consult with you. My goal is to be here for my daughter until she’s at least 20, though 30 would be better because of her Down syndrome and the stability she needs in her life. So often, I doubt I’ll make it into her teens. And on my worst days, I don’t want to!
But then, I do. She saves my life every day. I’d like to be able to give her some memories that don’t include me groaning when I stand, that aren’t tainted by me having to spend entire days in bed while my husband looks after her, instead of all of us spending the day together at the zoo, etc.
She deserves to not have to worry when I stand up and the world spins and then goes dark.
It’s been a very rough time here for our family, but I don’t want my precious baby to lose her mom early. It also isn’t really fair to her, me needing to constantly recuperate. I’m just blessed that she makes me want to, every single moment she’s alive.
Long post, but I want all three of you amazing women to know that is what you are- amazing. And you’ve made this life better for everyone you touch.
The truth is, AlphaHusky, you are the hero. You are the one who walked through hell and kept on walking for the sake of your family. I appreciate your kind words and your example. There are times when I feel as though I can’t go on, and then I think of you. If you can go on, then so can I.
Bless you and your family, AlphaHusky.
Patricia
Thank you so much Val for sharing this story with us. You will never know just what this story has done to my own life. You have inspired me to try and help a family get their child to Dr. Jamie. It’s a long journey in so many ways but without your story it may never have begun. I bless you for telling it like you did and I bless Jamie for being such a giving compassionate woman. Patricia Carter your a heroine too.
If women rued the world it would be such a different place to be.
Wow! Thank you for your blog and so glad to hear you have had some positive results with your daughter. I do not know anything about Dr Deckoff-Jones, nor the clinic in Hawaii, but would love to find out more, as my daughter is also very ill since age 13 (now 21) and also some other years that were bad prior to age 13. I can relate to your daughter’s journey and your story, although Josie (my daughter) may not be as ill. However, she has been home and bed bound mostly for 7 years. She has many symptoms and is always in some sort of pain, with constant nausea, breath hunger, tremors, diarrhoea, headaches etc etc. She has had suicidal periods. She has tried many many meds,including anti-depressants, and is currently on a cocktail of supplements. She’s been to many doctors and many alternative practitioners – and we are still pursuing whatever we can. She has thyroid and hormonal problems. She didn’t finish school, but is doing one subject (with difficulty) on-line at Uni (distance education); she was unable to attend school from age 13 and we did a hodge-podge of schooling through distance education; but she was too ill to do much. Her main sustenance has been through having online access to people and interests, plus discovering photography some years back – our garden has been photographed from every leaf, to every petal and bug! not to mention our dogs and cats! Anyway, if there is any way I could learn more about possible treatment in Hawaii, I would love to hear from you! We too have spent so much on treatments and approaches that have not worked and it is heart-breaking to have to watch my daughter suffer and not be able to live her life. I am her mum, and her full-time carer. Thank you again and all the very best to you and your daughter. :) xo
Oh, and by the way – we are in Australia. :)
A very touching story
Val
It’s been a month since your daughter sought treatment with Dr.Jamie. How is your daughter doing now? Does she continue to improve?
Hi Teri,
Thanks for asking! I would say no and yes. She’s had a rough month.
When we got home, she had major dental work done on one side of her mouth. We’d had to put it off for the past 3 years because she just couldn’t get to appointments, so it was a lot. That side of her face stayed swollen for 2 weeks afterwards. She’s scheduled to have the remaining work done on the other side next week, so we’re dreading that a bit. But grateful to finally be getting through it.
She started feeling better again last week and shocked me last night. She’d been watching the tv coverage of the May Day occupy protests yesterday and I noticed on twitter that OccupyDC’s march was starting just about the time I got home from work. I said, “So, should we go?” And she said, “Sure!” So we actually took the Metro downtown and were too late to march, but met them at the White House, took some pics, talked to the protesters, then had a lovely outdoor dinner at a sidewalk cafe before heading home again on the Metro. She’s tired today (me, too – we got home after midnight), but not destroyed. Amazing.
It seems slow, but still sure and heading in the right direction. What if this trajectory means she’ll eventually be able to return to college and have some life?
Val ,
that is very encouraging to hear, the fact that she was well enough to go through the dental treatment is in itself a breakthrough.
How wonderful you both made it down to the protest site, now that’s how well I would love to be. I watch the protests with frustration at not being able to be there.
That she can do all that gives us all hope for a better future.