I haven't been on in awhile, but I think I remember you telling us of your daughter before, was it you I suggested eosinophillic esophogatis to be looked in to alongside MCAD.  There could be one medication in her lineup that's still bothering her or is bothering her, also possibly a food, I don't know where you are in food elimination but it's been huge for me.  And when I "re try" a food or re introduce that particular item, it re educates me on how correct I am to avoid it! Stuff you may already be doing and we may have already mentioned so forgive me if you've done it all! Also her living situation, carpet, hidden molds, perfumes, scents of many kinds, hair products will put me in bent over stomach pain, dizziness and vomiting. Many are like a potent cologne now. Lotions, I got bit by something the other day and my benadryl cream was MIA, I grabbed the hydrocortosine because it was welting big and suspicious and I needed something pronto knowing I probably shouldn't use the hydrocortisone, the fragrance in it overwhelmed me, I had to wash it off within 10 minutes. Hydrocortisone cream, my gosh it's for irritated skin, why does it need to smell? Ok I went off subject.  Have you noticed anything similar when these episodes are occuring.
I just looked up Neurontin, is she swallowing pills or a liquid, the liquid cool strawberry anise flavor would throw a lot of us off our rocker with it's ingredient listing, the pills have cornstartch and lactose. Maybe there is a more "pure" brand she could try. Always always read the inert ingredients the companies vary these greatly. That's the gist I'm getting to on her medication list, make sure the brand she's using is the best for her and make sure once she starts a particular brand it is not changed under any circumstance unless you approve. A company will regularly change their supplier of a drug and you have no clue that it's gone from Teva brand to Dr Readdy's Lab and are now ingesting cornstarch and pregelatinized starch. That one really bothers me and can be a myriad of ingredients.

This is the reply I posted earlier at another entry of yours:


I fully understand your quandry as well as your grief to see your child suffering and not have any real answers!!  It´s very hard indeed!!

I´ve noticed she´s not on Singulair.  This medication has made a great impact upon how I feel on a daily basis.  In fact, it´s brought me more stability than the antihistamines alone have done.  They work incredibly well together for me.  I´m off of singulair at the moment.  It´s very expensive medication for me and so due to some financial difficulties I had to pull back off of it for a bit.  Yet it gives me the opportunity to see just how much I´m improved and how much the lack of it affects me.  I´m finding that I´m a great deal more irritable and feel irritated without it.  I also ACHE ALL OVER!  I feel like my body is 100 times more sensitive to light, sounds, feeling, and I have no doubts about more easy to trigger and it won´t surprise me if I end up having a crisis or two until I can get back on this medication in a few weeks.   So, although Rylee may be medicated, her doctors may have not found the right combo yet, and this is where they really need the help of Dr. Castells!!!   I recommend that you ask your doctors to speak with either her or Dr. Akin.  It may not be that they haven´t found the right diagnosis, which is always a possibility, however, it may be that they just don´t know how to properly medicate Rylee.

If I were you, were my child as sick as she is, I´d go to Boston and do what Kim Gruba did for Brieann - GO SEE DR. CASTELLS!!   Once Rylee is in their hands, with the gastrologist and pediatricians who do a full go over, then they can put their heads together and put Rylee on an appropriate medication regimine.  They will also investigate anything else which may not be masto and DEAL with it!

I also suggest you speak with Kim about Brie and what she´s experienced with Brie and her local doctors and how they´ve dealt with Brie´s case.  I´m sure that Kim can help you gain more understanding as to how all of this works.  

The reason for this is because children are GROWING and their needs change and with that, their medications.  They are also with an immune system which is still learning how to defend them and since they still are building antibodies, their immune system is continually under attack and with this the MCs are constantly being triggered.  This is one reason why the kids end up being so tricky to treat.  This is even more reason why you want your daughter in the hands of an authority, because MCAS children are not at all common, for the vast majority of them are UP kids.  This means that Rylee and Brieann are in a different category from the UP kids for their illness is not following the normal pattern of the other kids.  They need closer following for they are already breaking the rules.

So, please consider finding some way to head up to Boston.  It will not be money poorly invested.

I hope this helps!

Lisa

Oh, that's great, so Boston is likely an open door for you!!   Wonderful!!   Don't worry about the wait!  I know it will seem like an eternity but it's not, not really and they do need the time to get together to review her case, so don't get anxious about it.  All in good time and in the meanwhile, even though Rylee is so sick, if she were so very sick it wouldn't do any good going up there with her like that and you'd have to wait for your local doctors at Cincinnatti to manage to get her better enough to get there.  Which, on that account, I think they should speak with Dr. Castells or Akin and ask their advice as to how they can adjust Rylee's meds.  

As to your old posts, I haven't a clue there either!  Sorry, perhaps Deborah can tell you the answer to that question.

Lisa


As to the singulair doses, I'm sorry, but there is no way I can give you any help with that!  First, I'm not a doctor and I don't know medication levels for children, but second, since this is prescription medication and not over the counter, I can't be telling you any kind of doses and the such.  You've got to speak with her doctors about this and let them dose her properly.  I think that if they know that this  is pretty much standard procedure amongst the authorities with us patients this will help them feel that they are moving in the right direction.   So, I'm sorry, I wish I could help you with that.

Look, I know how hard it is to see your daughter suffering!  I've got two of my own now and it's hard to see them having to face this disease as well!  Yet, you've got to understand that even though she seems so sick to you, what you are seeing are the effects of allergic reacting and if her doctors can give her the proper medications, all of that will calm down and she'll go back to being a normal, bouncy kid again.  The medicines are the key, for MCAS does relatively little damage to us otherwise.  So, be at peace, she'll get better!!

I suggest you give a PM to Kim Gruba and ask her about Brie for both girls are about the same age.  Kim is 9 I believe and she's also an MCAS patient, so this is why I think that you and Kim have a bit in common and can talk things out together and make comparisons.

Lisa

If you speak with Kim, she will tell you, she made an awful lot of SQUEEKING!!  Sometimes, this is just what we´ve GOT to do, especially where our kids are concerned!!  If you don´t squeek and squawk and out and our scream, often the doctors don´t realize how bad things are.  I know it´s hard and it certainly goes against my grain, but without making some noise the doctors think all´s relatively fine!  

So, if you are feeling that Rylee is not doing well and that things are not the way they should START MAKING SOME NOISE!!   I´m not talking about being abusive or making noise in a wrong sense.  I´m talking about politely pestering, that of not letting moss gather kind of pestering.  I´m talking about with lots of respect and politeness contacting your doctor, taking Rylee to see him each time she gets sick, going back and calling up and letting him know each time she´s ill and what her reactions are and what´s not working, etc.  If you just let it slide, not wanting to pester the doctor, they get the idea that things are fine and that the meds are working and that Rylee is responding to treatment.  Unless you speak up and make sure they hear you, they won´t know that she´s still going through a lot of grief.  So, in this sense you must turn yourself into a squeeky wheel.  You are Rylee´s voice.  Yet, you are also your doctor´s eyes.  He can´t know what is going on if you don´t speak up and let him know, so SQUEEK, SQUAWK AND SCREAM if necessary.  Make yourself heard from Whoville until your doctor realizes that things aren´t going the way he thought it was.  If he still doesn´t hear you, then you may need to seek out another doctor.  For me, I have only done this regretfully and as a last option.  I don´t believe in Doctor hopping and I´ve often stuck it out with doctors long after my husband lost hope!  I just don´t believe in abandoning a doctor any more than I do of a doctor abandoning me.  You´ve got to give them a chance and that means giving them TIME to see some changes and improvement.   However, there does come a point where you make the choice of your child over that of the doctor and you´ve got to judge each doctor accordingly.  

So, please, speak with Kim, she´s an EXCELLENT example of how parents must be their children´s advocates!!!

Lisa

Hi Julie!  I hope you are indeed feeling better!  You've had a rough time of it sweety!!

Yes, you are right, smells and scents can indeed be a problem.  I don't have any issues with these things, however, I was so taken by surprise a few months ago when I did trigger to some of the most awful smelling perfume I've ever smelled!  It took me so much by surprise that I was with my son just taking him down the hill to the bus and by the time I got to the busstop I was about to blow!  I barely made it back home and when I did get home (the trip took no more than 5 minutes!) I immediately rushed to the bathroom and began throwing up!  It was AWFUL!!!

So, yes, even those of us who don't normally have issues with smells and scents and the such must be on our guard for indeed it can happen!

Hugs!

Lisa