"Suffering the Slings and Arrows of Outrageous Fortune"

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.

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Comments on: "Allergy Follow Up" (4)

  1. I’ve been following along on your journey for quite a while, but I wanted to let you know that I’ve been on Singulair since I was 4 for asthma management, and I have never had suicidal thoughts. My pediatrician gave us a study that linked the suicide risk to a history of suicide in the family (not just a history of depression), and that was shortly after the initial study came out about the problematic suicidal thoughts some teens experienced while on Singulair, so our fears were put at ease and we’ve had no problem. 🙂

    • Thanks Rachel! I am not too concerned about it, but was a just little startled when he brought it up. My son was on it for years for asthma starting at about 7 years old and never had any problem with it. So, I chalk it up to just one thing to keep an eye on but certainly wasn’t going to avoid a medicine that could help. Thanks for sharing your experience with it and commenting!

  2. Debbi Sprang said:

    Beth are you guys from Ohio. We are 🙂 Caleb was just diagnosis with MCAD. Long hard story…a complete nightmare.. but since going on the histamine blockers and mast cell stabilizer his POTS symptoms are 100% better. Cognitive issue are horrible…brain atrophy. Now trying to find a doctor to try the diamox…. What do we have to lose???

    • Yup, we are from western Ohio. Where are you? If you want to talk privately, feel free to email me at bethsmith92@live.com.

      I had the same attitude about Diamox, if the best option was a fusion, why on earth could we not try a low dose of Diamox for a night or two and see if it helped. Worst case scenario, she might need to go to the ER and get some IV fluids. Best case scenario, her headache and neurological symptoms would be managed and maybe we could avoid a fusion. We lucked out and got the best outcome, which I am eternally thankful for. Between Diamox and Zyrtec/ Zantac, she has improved immensely and has her life back. She isn’t 100% but she is SO much better than she was two years ago. It is all about finding the pieces of the puzzle – once you have them all, things that looked hopeless can suddenly improve beyond your imagination.

      [Edited to correct the typo in my email. Duh, you would think I would know my own email!]

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