"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Zyrtec/Zantac’

The Newly Revised Driscoll Theory

This post is long overdue (and I apologize for that!) but I said I would post when the updated version of the Driscoll Theory was available so, here goes! (Better late than never!)

You can go to Dr. Diana’s website and purchase the ebook. The $19.99 cost will help fund continuing research (and there is more on the horizon, trust me!)

FINAL_DrDiana_new

 

From Dr. D:
This book is written by doctors and patients who live with EDS/POTS every day.
Revealing the cause of “EDS/POTS” results in a new treatment paradigm.
All proceeds from this book will be used to fund further research.
Gentle hugs to you all…

 

I was privileged to help out a bit as Diana was working on this revision, as well as to contribute a piece about our experiences with the Driscoll Theory. Our story (Emily’s Story) is in the book (in Chapter 10), as are touching stories from other patients who have been helped by Dr. Diana’s work. In addition, there are chapters from physicians who have both personal and professional knowledge to share. Of course, POTS, intracranial pressure, mast cells, vascular abnormalities and more are explained and discussed.

Pop over to prettyill.com and grab your copy of the new Driscoll Theory. (I have it on my Kindle, for late night references and doctor visits, as well as my computer, so it is always available!)

Feel free to come back here and comment, once you have read it! If you have questions, either comment here or go to the Ask a Question page and comment there. If I can answer your question, I will. If I can’t, I will pass it along to Dr. D and have her answer you.

Having the Driscoll Theory in print once again is the next step to ensuring the paradigm shift that started more than 3 years ago becomes a standard of care for EDSers. So, it is important that we share this with everyone who could benefit!

Finally, I would like to thank Dr. Diana for her work in making her theory available for all of those who desperately need a bit of hope. I think we all sometimes forget that Diana is just like all the other EDSers out there – she has her own medical challenges to face and she has a family to care for – so that makes this project, that she worked so hard on, even more special. Thank You Dr. D!

 

Now, go get your copy and enjoy it! 🙂

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.

 

 

 

Fingers Crossed

Well, tomorrow we head down to Cincinnati Children’s to see Dr. Abonia, mast cell specialist. I am getting progressively more wound up as the hours wind down. I spent the day printing off info – symptoms, triggers, etc to share with him. I am devoutly hoping that I don’t need to provide the requisite articles on MCAS, since he is an alleged expert.

I am actually pretty optimistic because I have heard very good things about him, but I am just not able to fully trust until I see his expertise in person. If tomorrow’s appointment is bad, I will be terribly, terribly disappointed but that is nothing new.

At any rate, I am thinking positively until I have reason to think otherwise, so… I fully expect to come away tomorrow with at least a presumption of MCAS and hopefully additional treatment options. I won’t be surprised if her ‘POTS’ symptoms are labeled MCAS (nor will I be upset) and I won’t be surprised if the possibility of eosinophilic esophagitis is investigated.

We have waited a long, long time for this appointment and I am praying pretty hard that it is worth the wait. Will update sometime tomorrow with (hopefully good) news.

Back in the Referral Cycle

That is probably a good thing considering we are ready to make a concerted push to deal with the plethora of  conditions Em is living with, but it is a bit of a pain to juggle the schedule and fit all of the appointments in.

First of all, we have a follow up with neurology today and an appointment with the ped on Wednesday to discuss Em’s severe vitamin D deficiency. [If he poo-poos me about the seriousness of her test results, I cannot be responsible for my actions – I just may snap!]

Dr. Neilson referred us to GI and to allergy/immunology for a mast cell evaluation. I made both appointments last week, but had a nagging suspicion that I needed to check on at least the allergy appointment. The biggest red flag for me was being told  by the scheduler that Em had to go off all her antihistamines days before the appointment but the scheduler assured me all was well with the scheduling of this appointment.

She was wrong, of course, and it is a very good thing I got suspicious. I got a hold of the nurse today and she said Em should stay on the antihistamines if we are concerned about how she will do with out them.  (Which we definitely are! I cannot imagine her being even a few days without them, especially since she is having a bad spell right now even with them. So, that was a huge relief to hear!) Then she confirmed my suspicion that we had been scheduled as a regular allergy consult, not with the mast cell expert. So, she got me back to scheduling, after running interference for me and letting them know what I needed to have done. This was a little complicated because we had the allergy and GI appointments scheduled for the same day. After a little hemming and hawing, we got them both rescheduled for October 26. Then, it occurred to me to ask about the GI appointment – it was supposed to be through the motility clinic.

Well, it was wrong too. So, that one is still up in the air – I am waiting for a call back to actually schedule it. The lady in scheduling was very nice and helpful, but it is still frustrating when it goes like this!

I may yet try to move the appointment with Dr. Abonia forward – they could have got us in this Friday (!!!), but at the time we were still trying to schedule both appointments together and that wouldn’t have worked. Now that that isn’t going to happen, I don’t see any point in waiting that long to see him.

So, the moral of the story is: Don’t assume the schedulers know everything they need to know and make sure you pin someone down to get the answers you need. And, for suspected mast cell disease, you do not need to go off antihistamines before you see the doctor! Don’t listen to anyone who says you do!

I <3 Dr. D

I am about to protest in a small but important (at least to me) way and you are welcome to join me.

You may or may not be aware of the bruhaha on Inspire a while back about Dr. Diana being excluded from the speaking schedule at the Conference this year. To those of us whose lives have been changed because of her work, it makes little sense to exclude her.

The official word was: she has spoken before, there was no room this time, how did we know she hadn’t been asked and refused to come, etc.  As my 13 yo daughter would say : Whatever. Dr. D supporters were offended after being thoroughly stifled and I don’t think the issue was ever really resolved. I don’t mean to cause problems by bringing it up again and I am a little wary about mentioning it on Inspire, considering how it all went down previously.

But…it just feels wrong to know that Dr. D won’t be speaking. I feel pretty torn because I cannot boycott the conference and I want to support Dr. D. So, I came up with a little action that will quietly convey who I stand with. (Which, if anyone is curious, is anyone who is working to make life better for my kid and thus every EDSer.)

To show my support of Dr. D, I will be wearing this badge all weekend.

I wish I had thought of this sooner – I could have reached out and tried to get others on board, but, as usual, I had a great idea a little too late. And, I somehow don’t think this would be well received over on Inspire. But, they can’t do anything about me sharing this here! 🙂

If you are going to the conference and want to join my little statement, feel free to download this and make a badge to wear. I think I am ok with being the only one wearing this, but wouldn’t mind a little company!

Bottom line, my daughter would not even be able to go to the conference for an hour, let alone a whole day, if it were not for Dr. Diana Driscoll sharing her work on increased intracranial pressure and Diamox and MCAS and Zyrtec and Zantac. Last year, Em was far too ill to go or for me to leave her; this year, I am going and she is looking forward to spending a day at the conference. Enough said.

 

1 month post surgery

Yesterday we saw the wonderful surgeon who did Em’s appendectomy for a follow up appointment. And she was still wonderful.

First, we saw a young doctor – probably a surgical fellow – who works with Dr. West. Emphasis on ‘young’ – he didn’t look much older than my 16 yo son, so that was kind of funny to me. However, he was very nice and gentle with Em, so he got points from me. But, it was when I brought up mast cell activation that I decided I really liked him. When I told him about Em’s suspected mast cell disease and that, because surgery is a known trigger, I thought it had really stirred her mast cells up causing a lot of her current problems, he totally agreed and said that surgery was a major activator of mast cells. No rolling of the eyes, no snorting, no perplexed look while trying to remember exactly what mast cells are. Very refreshing.

Then, Dr. West came in and talked to us. Em’s incision is looking good and healing well – better than any of us really expected, I think.

But the ongoing GI issues and the fact that she continues to lose weight are concerning. She has lost at least 10 pounds, maybe more like 11 or 12 and most of that in just the last couple weeks. Dr. West thinks a lot of her pain and poor appetite is from the constipation so we are going to work on that. Miralax twice a day for a week and see if it helps, if it does, we can bump down to once a day. Regardless, I am to call Dr. West in a week and let her know how things are going and we will decide from there. She hopes to not have to see Em again, but will if necessary.

I remain impressed with this surgeon and would choose her to operate on my kid if it was ever necessary again.

On the Mast Cell front: On the way home, we stopped to eat and Em had a major reaction. She had not taken her Zyrtec and Zantac yet and just started feeling awful after eating a little. She ended up taking her Zyrtec and Zantac and then took a Benedryl when she started feeling like she was going to pass out. After the Benedryl, she eventually perked up but felt pretty rotten the rest of the day. Of course, she had to get up at 7 to get ready to go that morning and had only had about 6 hours of sleep, so feeling rotten was a given.

It is hard to believe that we are a month past surgery and that Em is doing as well as she is. The mast cell stuff and the weight loss is concerning, but hopefully we will be able to get her appetite going again if everything else settles down. Knowing we have a caring, knowledgeable doctor on our side is a great comfort – I feel less alone in dealing with all of this now which is a pretty cool thing!

 

Anaphalaxis/ Mast Cell Info

I was led to a great, informational site about anaphylaxis via a post on Inspire and I wanted to share it with you. For those dealing with MCAS (mast cell activation syndrome), which is so common in EDS, it is a great resource and I am going to be using it as an addition to the info I have found on the Mastocytosis Society page. The site is called Idiopathic Anaphylaxis Information Center and focuses on  Idiopathic Anaphylaxis as well as mast cell disease.

The link that was initially shared took me to an article about anaphylaxis, which I found very enlightening. In particular, the chart describing the grades of anaphylaxis on page  7 was particularly helpful.  It might change your thinking about what exactly anaphylaxis is…

According to this chart, my daughter has been dealing with Grade 2 (out of 4) anaphylaxis on a regular basis, to which I say:

 HA! I knew it! (while spiking the football and doing a spectacular end zone dance)

 I had been told that her flushing was nothing to be concerned about and the tachycardia/ near syncope could be anything and the GI pain was normal with EDS, but I was 100% sure that was she was experiencing was mild (so far) anaphylaxis. I knew it was anaphylaxis and this article validated my conclusions.  The fact that she responded almost immediately to H1/H2 antihistamines was a big red flag that what she was experiencing was, in fact, anaphylaxis. Unfortunately, I am the only who really sees that red flag for what it is.

Now, since she went on the Zyrtec (H1 blocker)and Zantac (H2 blocker) combo she was experiencing these anaphylaxis symptoms much less frequently – instead of a couple time a day, she was down to just a couple times a week. Unfortunately, since her surgery, she is back to reacting to everything. Which is another red flag because surgery is a known mast cell trigger. Most of her reactions currently are GI in nature and, recently, she has been having more skin reactions but, interestingly, no visible flushing. Fortunately, she rarely goes into breathing difficulties and when she does, a dose of Benedryl usually does the trick. After reading this article, I am even more glad we have an EpiPen on hand – just in case. (I knew she needed an EpiPen, which is why I asked for one for her latex allergy – I just felt we needed it on hand.)

Of course, while I do enjoy being right, having this opinion validated really doesn’t make me feel better. Knowing that it really is anaphylaxis is pretty scary and just one more thing to worry about. But, like I said, this is not news to me and simply is confirming what I already knew. Now we just have to get to a mast cell specialist and try to get this figured out! Easier said than done, I think…


New Year, New Hope

As I look towards the coming year, I cannot help but look back at 2011 as it finally comes to an end – 2011 was a year of both despair and miracles for my family.

This time last year we were waiting to get to Dr. Tinkle to get an official diagnosis of Ehlers Danlos Syndrome and we were watching our daughter get worse, day by day. As we headed into 2011, Em’s neurological symptoms got worse and worse and we had absolutely nowhere to turn for help. Her decline was rapid and terrifying. The ‘autonomic’ symptoms started in August and the neurological symptoms then hit with a stealthy vengeance that annihilated her quality of life  in a matter of weeks. In December and January she was feeling worse as each day passed. I remember researching Chiari in early January and, with a sinking heart,  becoming convinced that her symptoms fit;  if it wasn’t Chiari, it was most likely cervical instability, which was equally as terrifying. By February, she was in bed more and more, unable to function. By the end of February, she was spending all of her time in a darkened bedroom – in severe pain, severe headache, severe light and noise sensitivity; so dizzy she could hardly sit up, so nauseated she could barely eat.

We finally saw Dr. T and got a diagnosis, which was a huge relief. But, even with that, there seemed to be no firm answers about the neurological symptoms – although, Dr. T and the neurologist both agreed Em most likely had cervical instability. I started preparing myself for the idea of a fusion surgery and tried to prepare Em as well.

In early 2011, we hit bottom – we were in a deep, dark valley where despair stalked us and never left our side.

Heading into 2012, we are now full of hope. How could we not be hopeful, when we have been granted our very own miracle? In June 2011, I got a glimmer of hope when I happened upon the Driscoll Theory. I did a lot of research, I compiled information and gathered our personal ‘evidence’ and finally knew it was the answer. The next months were challenging, as we embarked on a futile and frustrating journey to get our doctors to consider the Driscoll Theory. But, we eventually prevailed and we got our miracle.

So, instead of a couple neuro surgeries, Em got a couple medications – Diamox and Zyrtec and Zantac – that have made all the difference and given her back her life. And now, as we head into 2012, she is going to be able to live a semblance of a normal life. She will be able to work on her physical and occupational therapy to strengthen and stabilize her joints. She is going to be able to do her school work and start catching up. She has a chance of being an almost normal 13 yo girl.

I learned many valuable {HARD} lessons over this past year and I am ready to take on 2012. I know my daughter’s life will always be  challenging but I have hope that she can and will continue to get better.

Because of  Dr. Diana Driscoll, the people living with EDS have hope and have the possibility of safe, effective treatments for some of the worst of their symptoms.

2012 is looking very hopeful indeed! Happy New Year to all – may the coming year bring peace and hope and health to each of you!

Another Day, Another Doctor

As usual, on the eve of an important doctors appointment, I am a bundle of nerves and excitement. So, I am here writing about what is on my mind.

Em has an appointment tomorrow with a local allergist/immunologist to get started on our ‘official’ mast cell investigation.Yes, we have already determined that Em’s issues are from mast cell disease – but self diagnosing is only the beginning. We have to get testing done to get an idea on what is really going on. I fully expect the tests to be negative, which theoretically makes things a bit more complicated. It won’t be complicated if this doctor recognizes Mast Cell Activation Syndrome, which is likely what is going on if the tests are negative but the symptoms exist and they respond to mast cell treatment. If she is willing to treat Em’s symptoms with Gastrocrom, the situation will be very, very simple.

The big worry I have, and where it gets much more complicated, is that she won’t recognize MCAS and would only be willing to offer gastrocrom as a treatment if the testing is positive. To be honest, I have said a prayer or two that the testing is positive for mastocytosis. Obviously, I don’t want Em to have masto, but it would certainly be easier to get treatment for that as opposed to a condition with the same scary symptoms that nobody recognizes!

I am trying not to make assumptions about how tomorrow is going to go – either way. I have heard some great things about this doctor. A friend takes her kids to this doctor and, from what she has told me, I think this doctor is one of those rare ‘thinking’ docs who don’t mind a challenge. So, I am not going in totally blind, just mostly blind! I have a good general report but not about anything to do with mast cell disease. I have a bunch of articles that I will be taking with me to share – I just hope she is willing to look at them!

I am cautiously optimistic because I feel that the symptoms are so obvious and the basic treatment has helped so much. But, even if tomorrow is a complete failure, we have to start somewhere and a local allergist is the place to start. The visit shouldn’t be a complete loss, even if MCAS is ignored: Em does have a latex allergy that (hopefully) this doctor can treat her for. I am going to be very disappointed if we don’t at least walk out of that building with a script for an epi pen. Truth be told, I will be disappointed if we don’t walk away with a script for gastrocrom as well, but I am really trying not to get my hopes up.

I am also worried about how much allergy testing this doctor will want to do. I know Em’s issues are not allergies and I hate to put her through a bunch of pointless, expensive testing for results that I already know. She is already accusing me of trying to ‘spring’ the blood and urine tests on her – I have told her numerous times that that is where the mast cell testing begins, but she only ‘heard’ me for the first time last night. She does have a decent idea of what the actual allergy testing involves and, hating needles the way she does, is less than thrilled about the whole concept. This is one of those times where a little tough love is necessary. I know she hates needles but, at the very least, we have to do the blood and urine tests, whether she likes it or not. (Mums the word about possible bone marrow biopsy – that is on a strictly need-to-know basis and she does not need to know about that yet! With any luck at all, we will be able to avoid that test!)

I am concerned a bit about the blood test itself – between EDS and mast cell reactions, she does not do well with getting blood drawn. We do have a plan to make it easier – anti-histamines, using a butterfly needle, requesting the ‘best’ technician, and being well hydrated should make the whole process better and less traumatic.

So, tomorrow at this time I should have a very good idea of where we are on our mast cell journey. I will share what I know sometime in the next couple days. Wish us luck!

Meds…

We have started the mast cell treatment yesterday – Zyrtec and Zantac. On our own, of course, since I have yet to find a doctor who will even let me ask to try it. So, I figured my best option was to present them with a done deal  – it is easier to ask forgiveness, than to get permission! And, since this is over-the-counter, I feel perfectly safe to try it without medical supervision. If it helps, that will be the ‘proof’ we need to stay on it and it, theoretically, should help bolster our request for Diamox -since they are each part of the theory and treatment. If it doesn’t help then, obviously, she shouldn’t stay on it.

Yesterday, she took both medications when she got up. By 3 o’clock, she said she wasn’t itchy at all and she thought the weird rashy/hivey spots that she gets regularly were gone. Her dizzyness was less and her headache even seemed better. Her stomach was hurting much less and the nausea was less as well. She actually asked for a meal – turkey, mashed potatoes & gravy, macaroni and cheese. Oh, and brussel sprouts. Before all of the neurological symptoms, she was an excellent eater and loved things like broccoli and brussel sprouts. (Yes, she is strange!)

Anyway, she ate and ate some more. Not only was this the first time in months that she requested an actual meal, but it was the first time in a very long time that she had seconds – usually, she pushes her plate away before her food is half gone – everything she eats hurts her stomach. So, we felt that the mast cell treatment was going swimmingly. Unfortunately, her stomach wasn’t quite ready for all of that food and she felt awful after eating so well. Two steps forward and one step back.

I am still very encouraged by what small improvements we have seen after even one day and fully expect that after a couple weeks, there will be substantial improvement. I had printed off a list of her symptoms – both mast cell and neurological – and asked her to note any changes each day. 19 symptoms had reduced from her normal daily level and 16 had stayed the same, after one treatment. I am very optimistic.

On the amitriptyline front… Since the evil neurologist told us to gradually increase it to 62.5 mgs and we ended up having to fill that prescription, we have decided to use this opportunity to increase her dose beyond what the pain clinic has prescribed. If we get to a ‘good’ dose, we can halt there and talk to the pain clinic about it on the 14th. Honestly, we are kind of stuck since the new 25 mg prescription makes the old 10 mg prescription obsolete. It is better to use what we have to gradually increase the dose than to be stuck suddenly taking an increased dose when the old script runs out. We have increased it to 35 from 30 and may bump up to 45 next week. Better that than 30 mgs to 50 mgs, over night.

I am feeling that we are approaching a good dosage, but that is muddled by the fact that she is taking benedryl at night and that definitely helps her sleep. Once we really get going with the mast cell treatment, I hope she can not take the benedryl a few nights to allow us to determine which med is actually helping her sleep.

Her sleep schedule has definitely improved over the last couple weeks but I don’t know if that is due to the ami or the benedryl or a complete coincidence. She is falling asleep around midnight, sleeping through the night and waking up on her own around noon – and sometimes even earlier. This is a huge  improvement. Of course, last night, she was awake until 4 am but hopefully that was an anomaly and not an end of a good run.  It could be the Zyrtec or it could be just one of those nights. Will have to keep an eye on her. Hopefully, she tolerates the Zyrtec well and it doesn’t create more side effects!

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