"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Vitamin D’

No News is Good News

At least I hope that is what you have been assuming in the absence of new posts! It is true – things are going well and we have been busy, busy, busy. I have been plugging away at my book – making good progress – and Em has been plugging away at therapy – also making good progress.

Since I last posted about the Midodrine not working, a funny thing happened… It started working. One minute I was annoyed by it and thought it a lost cause, then the next thing I knew, Em was seeming to have more energy and waking up in the morning (9:30, 10:00!) on her own.

Over the past few weeks, Em undertook a major clean up of her room – a room that she hadn’t done anything with for almost 3 years, so was a total wreck. Somehow the years between 10 and 14 were lost to chronic illness and suddenly here she is a young lady. Apparently, having Polly Pockets and Barbies laying around just won’t do when you are 14. So, we totally emptied her room, sorted through her stuff, finally set up the new bed we bought a couple years ago (that has been sitting in the box unused) and she is now on her way to having her own beautiful room – done to her 14 year old specifications and not mine for her as a baby. We still need to paint, get a couple pieces of furniture and do a few Pinterest inspired projects to call it done, but she is very pleased – with the room and with herself.

Anyway, it was in the midst of this huge project that I suddenly realized that she was… better. When I questioned her about the Midodrine being the cause, she thought about it for a minute and had to say that apparently the Midodrine is working. When she misses a dose, she knows it. She does better on 3 doses a day rather than just 2. She is still dizzy when upright, although even this seems to be improving as time goes by. Her heat intolerance is better, as is her exercise intolerance. She is so much more active than before, up and around, even walking outside (when it isn’t 95 bajillion degrees here) and playing with the dogs. It is pretty amazing, to be honest.

We saw the cardiologist yesterday and he is a little stumped as to why it took so long to work, but we are all willing to take the improvement and not question too much. The only other thing we have done differently in the same general time period is up her Vitamin D. So, that could explain the fatigue improving, but I don’t think it would explain the other symptoms improving. So, she will stick with the Midodrine and see the doctor in 6 months. Whatever benefits she gets from it are welcome and, so far at least, the benefits are significant. I am as surprised as anyone – gobsmacked, in fact.

This is just one improvement – between therapy and finding shoes that are both cute and supportive and the meds and her room and… everything – we are hopeful. It has been such a long road to get to this place. When I started this blog,  I was honestly in doubt that we would ever be looking at such improvement. I was so afraid that the stories of people getting better would just not happen for us. But, we have come a long way and hopeful feels good.  I know we still have a ways to go and there are pieces to the puzzle that still need to address, but, for now, we are going to sit and enjoy Hopeful for a while.

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Blood Work Results

We got the results of Em’s blood work…

Her vitamin D is 39.8. Obviously, that is much, MUCH better than the 6.1 that she was at in September and better than the 25.9 level in November. But, it is still not high enough and she seemed to make more progress in the first 2 months of vitamin D supplementation than she has in the last 5 months. Is it the whole cause of her fatigue? In light of the other blood work, I rather doubt it but it is likely an important piece of the puzzle.

We decided to bump her Vit. D up to 5,000 a day after her prescription ran out recently and she says she is feeling a difference. (Note that the relatively small gains made in the last 5 moths include the time that we bumped her up to 5,000 iu – now I wonder what it would have been just on the 2,000 iu a day.)  Brian very well may want to put her on the theraputic dose for a while, but if not, we will just do 5,000 on our own until we get her up above 50, preferably around 60 if we can do it.

The other blood work is for her thyroid and, although we are going to be dealing with the contrasting info that is part of treating thyroid issues, it is pretty clear that this is an issue for her. Her TSH is 4.06, her T4 is 7.6. Her T4 is smack in the middle of normal, by any standard, which vary hugely from lab to lab. Depending on which standard you go by, her TSH is barely within the upper limits of normal, elevated or significantly elevated.

The range our lab uses is .35 – 4.1, so she is just barely within the range on paper. However, many endocrinologists use a .3 – 3.0 range and, by that standard, she definitely has an elevated TSH. The most current info says that anything above 2 is elevated so, according to that standard, she is significantly elevated. So, I am going on the assumption that her results indicate that she likely has hypothroidism and her symptoms certainly back it up.

The question at the moment is, will the doctor see that her results are ‘normal’ and ignore the bigger picture or will he see that there is a real problem here and refer her. I just don’t know this doctor well enough to be able to predict, but,even  if he isn’t inclined to refer her, I know we have a couple other doctors who almost certainly will. I will be pushing hard for it because, not only could a simple prescription of synthroid vastly improve her symptoms and address the fatigue, thyroid dysfunction is also part of mito and a diagnosis would help us figure out if mito really is part of what is going on. I have felt pretty strongly that she needs to see an endocrinologist for more than a year, but none of the other doctors agree. Hopefully now I can get at least one of them to agree. We probably need a referral – our one local endo doesn’t see patients under 16 (already asked) and to get to either Riley or Cincinnati, we will need to be sent. Probably, but will look into it if no one listens.

So, it probably will not happen as quickly as I would like it to, since I prefer things to happen instantaneously, but I am not willing to wait until we get to follow up appointments in a few months to figure it out. The chance that we could actually address some of her symptoms and actually give her a chance to function is too important to be patient about.

Feeling a little overwhelmed with all of the stuff in the pipeline – MRI, gastric emptying study, cardiology appointment – but do finally feel like maybe we are making a little progress. I often feel like the little boy with his finger in the dike – holding back the flood out of sheer will, but when that is the only option it is what you do.

 

Allergy Follow Up

We saw Dr. Abonia for a follow up yesterday and, he was just as nice as he was the first time we saw him. If he seems a little preoccupied with the possibility of EoE and seems to be not at all focused on MCAS, I am able to tolerate it and give him time to, hopefully, get on the same page I am on. After all, we are delving into the strange and rare in either case and EoE will need to ruled in or out before we can even start to address the possibility of MCAS. He seems to be not really considering it at all and I remain convinced it is the problem, so we shall wait and see. (Although, in our report, it still mentions investigating both MCAS and EoE, so maybe it is still in his mind more than I think.)

He confirmed that Em’s bone scan is normal,  by the standards Reid uses. So I interpreted that to mean he just had to accept their reading of it but could not verify the accuracy himself. He was as shocked as I was by the fact that Em’s vitamin D level has increased as much as it has (from 6.1 2 months ago to 25.9 now) but is still concerned and feels she needs a higher dose of supplementation. He said to mention both her bone scan results and vit D levels to the new GI doc we see on the 10th, but I think I will see what I can do about it before then. [Apparently, the only pediatricians on our insurance are in the office I am currently unhappy with. But, our other option is to go with a family doc and I am willing to take that step at this point. Andrew has one in mind that he trusts to manage a complicated case like Em’s, so he is going to try to talk to him. So, that issue is on hold but is being dealt with.] He also suggested that she get with a dietician, through the GI doc,  to help figure out the  vit D deficiency and other food issues.

Dr. A was pleased that the hydrocortisone cream and vaseline has improved the rash on her neck. He suggested the vaseline and I later suggested the cortisone cream because that is what we used to use on her eczema when she was young and it worked well. At some point a couple years ago, Em decided that the cortisone cream was pointless and stopped using it. At which point, the rash got worse and worse. When she grudgingly tried it again at my suggestion after Abonia made a big deal of the rash, she was horrified to see how quickly it worked. But, beyond being aggravated that she could have kept the rash in check for the last couple years, she is happy to be rid of it and to have a way to manage it. He is tentatively labeling it as eczematous – which, from what I have read, just means it is a rash related to plain old eczema. I think that is likely the rash she has had on her face, but, since it is gone for now, couldn’t get an opinion on. He wants her to keep on with the vaseline and limit the use of the cream as much as possible.

One thing I liked was that he wanted to know what we wanted out of this visit – my first thought was to say that we were just following orders to follow up. Apparently I have had too many doctors not feeling the need to make an appointment worth our while to understand the concept of ‘let me do  more for you’! He is still convinced that the flushing is likely caused by EoE and not MCAS, but he pondered out loud as to what else we could try to help address the flushing. He suggested Singulair, which I was happy about because I knew that was the next MCAS treatment. That was actually the one thing I wanted to get out of the appointment, but was tiptoeing around. He talked about the really negative side effects (ie – suicide risk) and I was not thrilled with those. But, it seems logical to give it a try and we can just keep a very close eye on her as she tries the new med.

He wants to see us back a week or two after we get an endoscopy, which hopefully the new GI doc will order. It all feels very up-in-the-air which I don’t love, but at least we have a plan going forward and he was great about suggestions and listing things we need to talk to the new doc about.

One funny thing is that he started muttering about us doing things before he could even suggest them – like the Zyrtec and Zantac and the hydrocortisone. What made it funny was that I wanted to try Singulair before he suggested it – it was on the list of questions I had written down. So, I tried to make him feel better by not mentioning I thought of it before he brought it up and let him think it was his idea.  🙂

So, it was another good visit and we have a plan going forward, and we feel good about making some progress.

A Very Good Day

So, over the past few years, good days have been few and far between. Yesterday was not only a good day, it was a great one in many ways.

Em is now the proud owner of a cute little scooter and we are all looking forward to her increased independence. Still not sure why it took so long to appear or what was up with insurance but, this is the outcome we were praying for and we will just be thankful for it. Another thing to be thankful for: we popped into Myers to kill some time between appointments and she opted to walk instead of taking the brand new scooter. So, she spent 20 minutes or so walking around the store which is another rare occurrence. We will try to get some pictures in the next day or so and post them.

Yesterday, I dropped in to the doctor’s office to get the results of the bloodwork that was done on Monday checking Em’s vitamin d level. To my everlasting surprise, it has increased significantly over the last 2 months of being on 2,000 IU a day. Her level started out at 6.1 and is now 25.9. That is still deficient and a long way from where she should be – 60 would be good – but clearly there is progress that has been made. Better yet, it does seem to correlate with a general sense of feeling better. A bit more energy and the fatigue is a bit better and her bones are feeling better. If we can get her to somewhere around 60,  I envision her feeling exponentially better.

[As good as it is to hear of this improvement, I am pretty ticked off at the doctor’s office, although that is not news. I received no call about the results and had to fetch them myself. It is probably totally unreasonable to expect a call for a ‘normal’ result but one would think that an abnormal result would trigger a call. But nope. Not only did it not trigger a call, there is no plan whatsoever to alter the course of treatment or even discuss it. No ‘come in for a visit and let’s talk’, no ‘let’s up the dose, here’s a new script’. Nothing. Just ‘sign the release and have a nice day’. So, yeah, I am really happy about the improvement but not at all happy about the treatment. Will be checking into who we can switch to – now staying with this practice is my absolute last choice.]

The other very good news was for me, not Em. I have been more than a year without kidney stones at this point – had an x-ray to check for my follow up and it was clear! Don’t have to see the doctor again for a year. That is very, very good news and all because of drinking a little lemonade everyday.

This afternoon, we head back down to see Dr. Abonia for a follow up. Not sure what we will accomplish, but at least we like him and I feel like he is taking the issues seriously.

So, all in all, we are pretty happy and feeling very encouraged. It is a nice feeling!

Catching up…

It has been awhile since I last posted – nothing major has been going on EDS-wise and I have been busy with the usual life-type stuff, but an update is long overdue.

On the upcoming events list – the bone scan Dr. Abonia wanted Em to have is scheduled for Monday at 2:00 and the  appointment to do blood work to recheck Em’s vitamin D level is at 3:00, so it is at least convenient. As always, I am not quite sure what to wish for with this type of test…I would never be able to accept an ‘all is fine’ bone wise because I just don’t trust the radiologist to read it correctly and I have heard that bone scans can be notoriously inaccurate for EDSers. The best I can do is hope that any issues that exist are found – my prayer is always ‘if there is anything to see, let them see it’. With the bloodwork, I will be shocked if her level has raised at all. I mean, I want it to be normal, but I would be shocked if it has increased any significant amount with the little vitamin D she has been given. I just want someone to pay attention and give this kid the treatment she needs and deserves – again, same prayer as above.

Then, we have an appointment with Dr. Abonia on the 30th – hopefully, he will have the results of the bone scan by then. Also, I got an appointment with the doctor Dr. Garza recommended us to see at Riley. We see him Dec. 10th and hopefully will be able to get some steps taken to figure out what all is going on with Em. Not entirely sure about it, but it is worth a try I suppose. I waffled about it for awhile, because I would really prefer Dr. Garza at this point but the insurance issues tipped the balance and I finally just gave up and made the appointment.

As usual, insurance is the bane of my existence – a blessing and a curse. BCMH is a blessing  but a mixed one to be honest. I was advised to call and see if BCMH would cover diagnostic testing – an endoscopy, a bone scan. The fact that the lady I spoke to could not quite grasp the idea that Cincinnati Children’s was out of network for us or exactly what question I was asking for an answer to was pretty annoying but when she passed me on to a higher up who was way more patronizing than necessary (and obtuse to boot) I just shook my head in disbelief. After explaining the issue for the fourth time in 4 minutes, I was patiently told that I had to follow my insurance rules – if my insurance wouldn’t pay, BCMH won’t pay.

Fat lot of good that does me, since the experts Em needs are out of network and that is the whole point of BCMH for us.

Then the ‘helpful’ gentleman firmly instructed me to be in communication with our doctors about referring us to doctors our insurance would pay for. At which point, I explained, for the 2nd time to him and for the 5th time in as many minutes, that our insurance will pay for us to go to an in-network hospital, which does us no good whatsoever because the EXPERTS we NEED are at an out-of-network hospital which is why we need BCMH to help. Arggh. I gave up because this guy only dimly understood what I was telling him – I think he had a script he was following and by the end of the conversation he started to grasp that perhaps his script was not helping me at all, not that he could offer anything else.

When we ask insurance about covering these things we are told that they can’t deny or preapprove anything but they won’t pay if it is available in-network, although they have paid a reduced part of everything we have done at Cincinnati Children’s, and that when they deny us, we can appeal the decision. Which leaves us totally on the hook, if, in the end, our insurance refused to cover any specific test. So, we will be having the bone scan at Reid and an endoscopy, probably, at Riley. Yes, this infuriates me because all of this should be done by the doctors she is seeing at Cincinnati and the fact that she can’t directly impacts her quality of care. No, it probably isn’t the end of the world and all will work out but it still makes me mad.

So, you can see why I have been a little blah and not very motivated to write – although, now that I started, I clearly had plenty to say! I guess I bottled it up for long enough and, as usual, writing here makes me feel better.

Wrapping up for now – I promise it won’t be so long between posts next time – I just want to wish everyone a Happy Thanksgiving. I am so thankful for all you who read and who lend a virtual ear, for everyone who comments and shares their experience and advice and support. I am thankful for many things but the online network of EDSers is definitely on my list!

 

 

Mast cell appointment update

Phew. We are home after a very long (and rainy) day. We are all exhausted but… content. I am pleased with the outcome and feel that we are on the verge of getting some real answers.

Ironically, the thing that I am happiest about has nothing to do with why we were there:  he said (to us and in his report) that he absolutely agrees that Em needs to be seen by the motility clinic and he will be working closely with Dr. Garza to figure out how to help Em. I have been very worried about going to the motility clinic – that they would think Em wasn’t severe enough to warrant being there; that because she is doing ‘ok’ at the moment they would question why we were there. Dr. Abonia set my mind at ease. Validation is such a lovely thing!

We liked Dr. Abonia – he joked a bit (a refreshing trait in a specialist) and was a good listener – he seemed to go out of his way to be relaxed and pleasant. He went over Em’s med list with us, although the nurse already had, corrected mistakes and asked questions so he knew exactly what she was taking and why. Then he said ‘start at the beginning and, by the beginning, I mean the EDS stuff, then we will get to the rest.’ So, he got the full story from 2009 until the present – yes, he deserves a medal for listening and attempting to keep up!

He also took a thorough family history (parents, siblings and grandparents) and asked a lot of questions about symptoms – several times. We definitely felt heard – he asked questions if there was a point he wasn’t clear on but he mainly listened a lot. Part way through, he stated he was going to start typing out his thoughts and we could correct him if we heard anything we disagreed with. So, he started typing his report, talking aloud as he did. (Just want to point out, that I get yelled at when I do that, but Em was apparently fine with him doing it. Go figure!) He typed a book and we had further discussions as he did. When we left, he printed off his report and gave it to us, as well as sending it to the other pertinent doctors. (All the docs at Cin Childrens do this, but the length of this report is unusual – maybe 8 pages as opposed to the usual 3.)

Results:

  • Mast Cell Activation Disorder – I think he is not ruling it out, but it is a diagnosis of exclusion, since there is no easy way to confirm it. So, he is all for continuing the Zyrtec and Zantac, and is fine with us doubling the Zyrtec dose. I suspect we will eventually get to this as a diagnosis, but he had other, bigger and easier fish to fry in the meantime. He also said, if it is MCAS, all the results will probably be negative anyway, so there is no point in doing more testing right now.
  • Eosinophilic Esophagitis – He is definitely thinking this is a possibility, which is no surprise and I even agree with. It is interesting that Em later said his description of how it feels to swallow is right on. He said that EoE is associated with EDS, that he sees way more cases of EoE in EDS patients than he would otherwise expect, so he was not surprised to find this as an issue. He will be working with Dr. Garza to figure it out, since it overlaps the two specialties. I figure that she will be having a scope in the near future, because he did not want to start her on anything that might make it harder to make a determination of what is wrong. He had Em hop off the exam table and used the paper to draw a diagram of a normal esophagus and a EoE esophagus and explained how eosinophils and mast cells are involved. [On one hand, I totally agree with him that this is a primary concern and the easiest to rule in/rule out. On the other hand, I do feel that he focused perhaps a bit too much on this and ignored the issue of mast cell. But, I think this is a long term quest to find answers and an offhand diagnosis would not be appropriate. So, I am ok with waiting for answers.] Flushing, food intolerances and eczema all go along with EoE, so it is a likely culprit. I happen to believe it has some co-conspirators, but we shall wait and see!
  • Weird Rash – She has had eczema since she was a baby and he confirmed that the rash she has on her arm is indeed eczema. However, she has a strange rash on her neck that totally stumped him, which she thought was pretty awesome. He waffled back and forth about it and what to do about it. He finally decided to take pictures of it, so he could share it with colleagues and get opinions about how to treat it. It may be eczema, may not be. He spent a fair amount of time looking at it and talking about it. If I had to guess, based of course on nothing but my non-medical gut feeling, I would say it is mast cell related and it looks weird because of her EDS skin. She has said for a long time that it is scarred AND a rash and I tend to agree with her. It has been there for a long time and has gotten bigger and bigger and just looks strange. He asked what our other doctors said about it and we told him no one ever said anything about it or took any interest in it at all. Hopefully, he understood that we appreciated him actually trying to figure it out for her. Of course, that other weird rash, the one she has had around her eyes was totally gone today. Of course. But, if it comes back, we can deal with it then.
  • Vitamin D – He is going to be asking for a DEXA scan – he took her vitamin D deficiency seriously and is wanting some answers. Loved this, seriously. Seriously.

So, in summary, good appointment – no concrete progress but progress is imminent. We see him in a month and, by then will have been seen at the motility clinic. I feel very hopeful tonight and I feel validated. This appointment was definitely worth waiting for.

 

 

 

Update

Haven’t had anything new to post recently, but I will take a few minutes to give some quick updates:

Nothing new to report on the vitamin D front. Still trying to figure out how to get to someone who can/will help us. I need to call the pain doc and let him know that I am not happy with the treatment Em is getting for the vit D deficiency. Maybe he will go along and treat it himself. Or, better yet, agree that Em needs to see an endocrinologist. I am just sick of the whole thing, to be honest. It should not be this hard to treat this deficiency properly. Obviously, we have seen no improvements of her symptoms on the 2,000 iu of vitamin D that she is on.

I need to find out which pediatricians are available to switch to – because we are not going back to the old one. I am concerned that we are going to be stuck staying in the same practice, in which case, I don’t feel like I can burn bridges by expressing my opinion to the doctor we have fired. After seeing a number of doctors in this practice over the years, I can’t say that I would be sad to leave – I just don’t know if there are any other pediatricians our insurance covers. There has been one that we liked when we saw her one time that we couldn’t get in to see our own doctor – but I am not holding my breath that she will be awesome. Better than what we had might be as good as it gets.

One other course of action that we are going to follow up on is the idea of a physiatrist – also known as a physical medicine doctor or a rehabilitation doctor. A thread on Inspire reminded me of this option and I think it is definitely worth looking into. Andrew says there is a new one at Reid and we need to find out if he would even take Emily as a patient. Then, of course, it would be a matter of discovering if he could be a positive addition to our medical team. At least it is another hopeful possibility until we know differently.

We are still waiting to hear whether insurance will approve the scooter that has been ordered for Em. It will be 3 weeks Thursday that we met with the wheelchair rep and decided to order the scooter – hopefully we will hear something soon. I am hoping that it is approved soon and that it is in her possession for Halloween. She is planning on going trick or treating with homeschooling friends and I would LOVE it if she had the scooter to ride instead of being pushed in her chair. Time is running out though, so again, just waiting to hear something.

Also still waiting to have the GI appointment scheduled and I am not happy about that. I have now tried to schedule it 3 times – the first time, they scheduled it wrong and that mistake was discovered only because I called about another appointment. I was transferred to the only person who could make the appointment – she never returned my call. I called again and still have not heard from her. My next step is to throw this back to Dr. Neilson and let them push it through.

So, in summary:

  • On our own to find answers. AGAIN.
  • Waiting, waiting, waiting.
  • Not a happy camper about any of it.

Pretty much the usual, in other words.

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