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Why are the MCAD meds helping??? (Read 4147 times)
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Why are the MCAD meds helping???
09/15/11 at 15:35:27
 
Hello all!  I have posted previously regarding my 11 yr. old daugther, Rylee.  In June 2011, she was diagnosed with MCAD at Cincinnati Children's Hospital.  However, in 2007 she was diagnosed with Eosinophiliac Colitis.  I posted earlier that the doctor is not certain which is her primary diagnosis or if both of these diagnoses are secondary to some primary autoimmune disorder.  Since the end of June, he has been treating her with Prednisone, Gastrocrom (4 ampules a day), Zantac (100 mg's 3 times a day), Zyrtec (10 mg's twice a day), neurontin (we have had to increase it to 300 mg's 3 times a day), and now Protonix (20 mg's twice a day).  STILL she is having migratory pain (even with all that neurontin),  nauseous, feels overall bad (low energy/stamina), some abominal pain, anxiety.  The only thing that is much better is itching.  We had to start her on Protonix 2 days ago because she got where it was incredibly painful to swallow.  They are thinking reflux has her esophagus all irritated.  So, my question is this - if this is really MCAD then why aren't the meds really helping her???
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Angie (Rylee's mom)
 
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Lisa
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Re: Why are the MCAD meds helping???
Reply #1 - 09/16/11 at 04:14:56
 
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
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Don´t forget, there is so much more to life than being sick!
 
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