[Beth]

Hi All!
Been quite a while since I posted – my daughter Emily is still doing well on the Diamox (500 mgs split over 3 doses during the day). Her autonomic dysfunction still comes and goes but is considerably better. Her headache is managed and her neurological symptoms are much improved, thank God!

We did find that her acidity level was the key. When her headache returned after 4 months on the Diamox, we started her on baking soda capsules that I was filling for her. Eventually, we switched to baking soda tablets that I purchase from Walgreens. We monitored her CO2 levels and found she needs to be above 22 – below 23 means the headache is back. She takes 5 650 mg tablets a day and that seems to do the trick.

We did discover something important that I wanted to share, as it could be helpful to some of you in similar circumstances.

This spring, right as we were trying to get her acidity level under control, she had an appendectomy and has started having some troubling GI symptoms – symptoms of Gastroparesis. Slow motility, poor appetite, etc. The baking soda tablets seemed to work better all around than the capsules, so we just didn’t think much of it at the time.

Then, recently, we ran out of the tablets – it was the weekend and I couldn’t get to the pharmacy. So, I filled some of the capsules that we had left over for her to take until I could get the tablets.

Within an hour of taking the capsules, her headache returned and got progressively worse over the next 24 hours or so. I just couldn’t figure it out – I know the dosage is less precise in the capsules but not so much that it wouldn’t work at all. Needless to say, I got the tablets asap because she was miserable. Within the hour after taking the tablets, her headache was gone again.

We finally concluded that she wasn’t able to digest the gelatin capsule (at all? fully?) and so was not getting enough of the baking soda into her system. She clearly is able to digest and absorb the tablet.

So, the moral of the story is – if the Diamox isn’t working, you may not need to increase the dose. And if the baking soda capsules aren’t doing the trick, you might try the tablets or a different brand of capsules if there is a possibility that your absorption is poor (and that is the case for many EDSers). I don’t know exactly what it was about those capsules – she takes other meds in the form of capsules and they seem to work fine, but we will keep this problem in mind and monitor any meds that seem less than effective!

Hope that story may help someone – it was definitely enlightening for us!

Thanks!

[Beth]

Thanks PM,
I found that first link and some others when I did my own search after asking my question. I think it is entirely possible that there was mast cell involvement in my daughter’s appendicitis but I suppose I will never know for sure.

Very interesting stuff though,thanks!

[Beth]

Hi,
My daughter is doing the opposite – pectus caranitum, so I have read up on this a bit. That caving in is called pectus excavatum. It is EDS/collagen related. But, it is not a big deal unless it is actually causing difficulty breathing or compressing the heart. The psychological issues with a different appearance can also be significant, as kids get older.

There is surgery that can be done. For the pectus caranitum, there is bracing to compress the bulge, but pectus excavatum would require surgery if it needed addressed. There are some exercises to do when it is mild, but the info I read indicated that they are not very successful.

Like I said, from what I understand, it is not a big deal but you probably want to bring it to the attention of your EDS doc. They can keep an eye on it, particularly if it is progressing rapidly. FWIW, my daughter’s is progressing rapidly too and it is quite painful. But, it is not something to get really worried about. Although, that is easier said than done and I should take my own advice! 😉

HTH!

[Beth]

A question – for Dr. D or anyone else who might be able to answer…

Could mast cell disease attack the appendix? The surgeon told us my daughter’s appendix was gangrenous and huge, although fortunately it was not perforated. I was just curious if there could be any connection at all to mast cell disease or if this was just a random thing that occurred.

Thanks!
Beth

[Beth]

Hey MattiesMom,
Yup, that was my blog that pointed you here. I am glad you found relief with the treatment options Dr. D suggests. I hate to even consider where my daughter would be without Dr. D’s ‘theory’ – it doesn’t even bear thinking about! I know what you mean about having hope. When I found the Driscoll Theory, I had hope for the first time in many months. I feel compelled to share that hope whenever and wherever I can – on my blog, on Inspire, or anywhere there is an EDSer who could benefit. I feel so lucky to have found this information and I would be wrong to keep it to myself.

Thanks for the kind wishes – my daughter is recovering nicely. I think I can finally breathe again!

Beth

[Beth]

I have pointed a few people this way in the fallout of that mess. I am not the only one who will be missing you and Dr. D on Inspire. I am pretty sure my snarky attitude was responsible for getting yet another thread closed down after you left – and I was even being restrained at the time! I would be banned for sure if I said what I really thought!

I will be staying on Inspire, unless I get myself banned. And I will continue speaking about Dr. D’s work – if it annoys anyone there, so be it. This is too important to be silenced, although I understand why you both left.

I am glad I can talk about it here without being censored.;-)

Beth

[Beth]

Hey Kamillean,
I don’t have all the answers – in fact, I have some of the same questions! But, I will say what we are doing for my daughter and hopefully others will chime in with more info.

My daughter is now on 125 mg of Diamox 3x a day. One dose at night had been working perfectly for almost 4 months until the headaches suddenly returned. Adding a morning dose helped some but the headache is still a problem and is quite variable from moment to moment and hour to hour. We just added the 3rd dose – she hasn’t taken it yet so we will see how that works.

We got bloodwork done to check her CO2 levels (and potassium, sodium, etc). I have read that the normal range for CO2 is 22-32, although our doctor said the bottom range is 21. Em’s CO2 level was 23 – he said it is in the normal range so it isn’t a problem – but I do feel that being on the low end of normal, she was getting too acidic and maybe that was minimizing the effect of the Diamox.

We had started her on baking soda capsules as soon as she had the bloodwork done, per Dr. D’s advice. (I purchased empty gelatin capsules at a health food store, you can also order them online. There is a kit you can order to make filling them much easier, but I have developed my own little system that is doable for now. Oh, and you can purchase baking soda tablets cheap at a pharmacy but my daughter ‘needs’ the capsules and I don’t feel like arguing with her! Tablets would be much easier than fiddling with filling the capsules – the things we do for our kids!)

She takes 5 baking soda capsules a day – but I really have no idea on how many she needs to take. I read online of people taking high doses of diamox taking lots – like 12 or more a day, to regulate their CO2. The capsules we have hold 250 mgs – I guess 5 would be 1,250 mgs a day. It doesn’t seem to be doing much, so maybe we need more until it regulates? It is so hard to tell – I think it might be working – the headaches aren’t as bad as they were initially, but we have also added additional doses of Diamox and the headaches are still a problem so I just don’t know. The 5 she takes are spread out through the day, maybe she needs to take them all at once?

I am starting to wonder if we need to look into CCSVI – but I think I will start a new thread for that question.

My daughter also takes Zyrtec and Zantac. She is on 150 mgs of Zantac 2x a day. I don’t know if that will do anything for the CO2 level…

Kamillean, it is really good to hear from another mom who is dealing with the same issues! Hopefully we can get answers for our girls!

[Beth]

Thanks PalominoMorgan,
I will check at the store. It *would* be a tad easier to buy them as opposed to making them! Although, my daughter might prefer capsules to tablets but it is worth a try!

Thanks again!

[Beth]

Thanks so much Dr. D,
You had told me to start her on baking soda in the beginning but I just didn’t do it. She takes so many pills every day and she was doing so well on the Diamox that I wimped out – but she will just have to add in a few more if she wants the Diamox to work. And she does! Being headache free was a very pleasant thing and I know she will do what she needs to do to get there again!

I am actually just taking a break from making some capsules right now, so she can start taking them this morning. We won’t be waiting for the blood work results! I grabbed some empty capsules at our local health food store so I could make her some right away but will eventually order a filler kit so it is easier to make them.

Oh, and they are looking at her potassium levels as well, so we will keep an eye on both CO2 and potassium.

Thanks so much for answering so quickly – I know how busy you are. You always give the best advice, even if I didn’t follow all of it originally!

Have a wonderful day!

[Beth]

Hi again,
Back with a bit of an issue. My daughter is finding that her headache is becoming a problem again – she is very dizzy (lightheaded/faint) and light and sound sensitive again, as well. Her headache had been gone entirely on the Diamox. We have increased the dose – now she takes 125 mgs morning and night. Increasing the dose has seemed to help, but her headache is still significant (hovers around a 6/10) and it never goes away now (only ever reduces to a 2/10).

We just got bloodwork done to check her CO2 levels – should hear back in the next few days what the results are. In the meantime, we have baking soda capsules for her to take. If her CO2 levels are too high, is it typical for the Diamox to just not work quite as well? Or would it stop working entirely?

Also, I wanted to ask how much barometric pressure can effect ICP… These headaches started a couple weeks ago when we had a couple nasty weather systems passing through and I was hoping it was causing a temporary problem. But, the storms passed and the headaches didn’t – although they do seem to worsen when the weather is bad and are better when the weather is clear. Anyway, I just watched the CSSVI video and Dr. D mentioned barometric pressure and it reinforced what I was thinking. Could barometric pressure changes have tipped her ICP to the point of having more problems, particularly if her CO2 levels are iffy?

Thanks! We may end up seeing our physicians assistant who prescribed the Diamox, so I would love to have some info for him from the people who really know about this!

[Beth]

Hey Dr. D,
I watched your latest video last week – it was very helpful as we were preparing for Emily’s appt with the allergist this week. The visit didn’t go as well as I had hoped, but I was prepared for this doctor to be clueless about MCAS. She clearly didn’t think gastrocrom was necessary right now and wanted to do blood work before she made any decisions. I have heard really positive things about this doc that make me want to give her a bit more of a chance before I move on to another doctor. And she (personally) called me at home to suggest a couple other things she thought of after we left the office. So, she really is ‘thinking’ and not just shoving Emily aside and that is a start.

Anyway, the initial bloodwork was normal (no surprise there). The doc also has ordered a 24 hour urine test to rule out carcinoid and other stuff, which is fine by me. She also wants us to do a serum tryptase immediately following a severe flushing episode, which I think is a great idea. Probably will be normal but is probably our best chance of actually catching something lab-wise. Her other suggestion is to keep a food diary and record when Emily has an episode of abdominal pain, dizziness, flushing, etc. She is again having frequent food reactions so we just have to wait for a severe one. Shouldn’t have to wait long 🙁 Her birthday is this week and she has requested a fruit plate instead of cake, because she knows it will make her sick. How sad is that?

My plan is to keep extensive records of these food reactions, plus pictures of every visible flushing episode my daughter has for the next few weeks. We also will be keeping records of all flushing episodes since it is not only caused by food and any non-food reactions that cause dizziness, etc. I am going to drop off copies of the Driscoll Theory and a couple other articles for the doctor – I had them with me at our appointment but figured it was pointless. Then she called with her additional ideas and I regretted not sharing them with her, because I think she will actually look at them and may even be convinced.

So, here is my question – is there any other testing we need to be doing right now? I sort of feel that the testing is likely to be normal and the symptoms are what we need to be looking at but docs have to do the testing. Very frustrating – the doctor and nurse both seemed to feel that I should be over-the-moon happy because my daughter most likely doesn’t have masto. Ummm, great. But, if she has all of the same symptoms and you won’t treat her and she remains miserable… Well, forgive me for not thinking that is awesome!

Thanks for all of your help, Dr. D – Emily’s life has improved so much since we found your theory. We will head into 2012 with hope, something we really did not have a year ago!

[Beth]

Hi
Just wanted to give a quick update. My daughter is still doing fabulously on the Diamox. Her headache is gone and she is able to be so much more active than she was before.

We had a follow up appt with the PA who prescribed the Diamox for us – he gave us both high 5’s and was so happy for our success.

I did want to share one thing he said because it made me smile and I thought I needed to share it with Dr. D.

He said ‘Gosh, I bet the lady who came up with this theory has taken a lot of criticism, hasn’t she?’ When I said ‘yes, there has been some criticism and resistance’, he replied, ‘Well, look at Dr. Heimlich. Everybody criticized him but look at how many lives he saved because he stuck with it.’ So, he sort of compared Dr. Diana to Dr. Heimlich and I liked that a lot – because she has been a lifesaver to us!

[Beth]

Just tried to submit a long (grateful) update but it got rejected. Maybe I will email you so I can share the good news, until you can tweak the spam filter some more…

[Beth]

Back with good news! My daughter took 62.5 mgs of diamox last night and 2 hours later she told me not to get too excited, but her headache was easing and the dizziness was less too. When she got up today, the headache wasn’t completely gone but much reduced. A ‘2’ instead of the normal ‘8’ on the pain scale. That in itself is a huge improvement and I think it is just the beginning.

Interestingly, her positional blurred vision (when she turned her head to the left, her right eye blurred and vice versa) is essentially gone this morning and she no longer feels dizzy when she turns her head. She says it still feels ‘weird’ to turn her head, like it is too tight, but I suspect when we get the dose just right, that weird feeling will ease as well.

No problems tolerating the diamox thus far, but we will certainly keep an eye on her! We will bump the dose up to 125 mgs tonight and see if we can get rid of the headache completely.

At any rate, I feel like we have been granted a miracle. Dr. D, there are not words to express how grateful I am to you for putting this info out to help people like us. You have given my daughter a chance at living a full life by sharing your knowledge. All I can say is thank you – and I will continue to share the Driscoll Theory with anyone who will listen!

[Beth]

Hi! I finally have some good news to report. We had our appointment with the local neurologist this morning – actually he is a physicians asst. He was awesome – he listened, understood, asked questions and prescribed Diamox with no qualms. In fact, he couldn’t understand why no one else would prescribe it. He was perfectly willing to be guided by the results of the clinical trial and follow what had worked for others. He even praised me for being an advocate for my kid! He is my new hero.

So, we have a month of Diamox to try and we will see how it goes! Will let you know how it goes!

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