Guest Mary from OH Posted December 2, 2004 Report Share Posted December 2, 2004 Well. I'm on eggshells. We got back from Marissa's cissapride check-up from GI today. Her EKG showed MARKED changes!!! I am very worried for several reasons!!! 1. Probably the cissapride is hurting her heart, which I would never want to happen!! 2. Probably she will have to discontinue the cissapride, which is a BAD thing because it's the only thing that has enabled her to be able to eat! 3. Marissa has many of the symptoms of POTS. We have chosen not to have her tested at this time because the testing is too invasive for a 5 year old and she is not adversely suffering... I did however ask them about the danger if she actually HAS POTS and took propulsid if there would be a problem. They said it was ok.Now, I'm a nervous wreck. She has SO MANY things wrong with her EKG. Serious things. Serious changes from 4 months ago.... Please keep her in your prayers.Hopefully we will know something more concrete tomorrow from GI and/or cardiology. I don't know if these changes are temporary or permanent... I'm at such a loss right now. We're going to lose the only med that has helped her in 5 yrs and it may have caused irreparable damage to her heart. She has already been through SO much in her short 5 years!!!Please keep Marissa and our family in your prayers. Thanks so much.And I've had a BAD last week or so too!! I ended up in Urgent Care and ER. My arms swelled up and turned blotchy red because I tried to do too much yard work. I had been exhausted for about 3 days already and having pain and tingling going down my right arm. My speech was somewhat disturbed as was my thinking, but then again between my fibro, the topamax and the POTS.... So, I didn't think much of it. But when I saw my arms swollen up 1" I went to the Urgent Care. They ended up doing a full neuro on me (because of my speech, walking etc...) and discovered I had left-sided weakness. Oh yeah, I also had a migraine that I had had for a week! Anyhow, the dr flipped and said she thought I was having a stroke and asked if I drove myself there. She was ready to call the squad. She had another dr examine me. He disagreed. (he barely looked at me). They ended up sending me home with NOTHING!!! They said "we don't dispense narcotics" and if you get worse, go to ER!!! I was so sick I couldn't drive all the way to ER, so the next day, I finally had to call my husband at work and have him come and take me. My neuro signs were better, but my migraine was BAD!!! I got tons of meds and still had it. They tried to release me with it still pounding away and I wouldn't let them. So after much argument I got different medicine so I didn't have a stroke....Calgon.... take me away!!!!!!!!!!!!!!!!!!!!Mary, mom to Marissa (5 , cecostomy, dysmotility, gastroparesis, hypomotility, visceral hyperalgesia, GERD, redundant colon, mild neuropathy in sm. bowel, migraines, abnormal lack of contractions while eating, abdominal migraines, and frequently prolapsing cecostomy...)Columbus, OH USA Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 2, 2004 Report Share Posted December 2, 2004 Oh Mary, I am so sorry for what you are going through, and your dear daughter. How unbelievably hard it is to have a very ill young child. I would imagine that this stress is making your conditions flare.I hope you get some reassurance and good help from her doctors tomorrow.You are both very much in my thoughts and prayers tonight.Katherine Quote Link to comment Share on other sites More sharing options...
Nicole's Mom Posted December 2, 2004 Report Share Posted December 2, 2004 Mary,I am so sorry for this newest dilemma that you are faced with regarding that medication Marissa has taken and now her ekg results. The stress is making you ill as well. It is so hard to not worry when so much is taking place and it feels like things are spinning out of control. The pain of having an ill child no matter what their age is so difficult. I will definately say prayers for you and Marissa that you will get some better news tomorrow from the doctor. Take care.Beverly Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 2, 2004 Report Share Posted December 2, 2004 Mary, you have so much to deal with! I hope the changes to Marissa's heart are reversible. I can't imagine how hard all this is right now for you. You and Marissa and all your family are in my special intention prayers. Take your time, make good decisions and know all our strengths are here for you. Warm regards, tearose Quote Link to comment Share on other sites More sharing options...
DancingLight Posted December 2, 2004 Report Share Posted December 2, 2004 Mary,I echo what everyone else has said...My heart is aching for you and Marissa...I cannot imagine having a child so little and watching her suffer...these are the times that I have my "God, where are you?" moments...Please keep us updated and know you are in our thoughts.Emily Quote Link to comment Share on other sites More sharing options...
Eillyre Posted December 2, 2004 Report Share Posted December 2, 2004 Dear Mary,I'm so sorry to hear this news -- what heartache! I can't imagine what it must be like. I wish so much that I could be there to help you in any way that I could! If there is anything that you need help with, please, let us know. Is there anything that your daughter would enjoy that I could send her? I would love to mail a card and package to try to brighten her day even a little. I'm relatively new to the whole realm of POTS troubles, so I don't really have much in the way of helpful medical advice. I'll be praying for wisdom for you, your husband, and the doctors, as well as for peace of mind and body for all of you suffering there. With love and prayers,Angela Kendall Park, NJ Quote Link to comment Share on other sites More sharing options...
geneva Posted December 2, 2004 Report Share Posted December 2, 2004 Mary, it just doesn't seem fair.....I am so sorry your family is going through this difficult ordeal. Heart ache is certainly what I too am feeling for little Marissa.As hard as it is to do with all the stress you are under, do try to take care of yourself as well as MArissa. She needs you strong. We are all here for you and will wait to hear an update. Quote Link to comment Share on other sites More sharing options...
DawnA Posted December 2, 2004 Report Share Posted December 2, 2004 Mary, you and Marissa are diffinitely in my thoughts and prayers. I was wondered if Marissas and your neuro have looked in to mitochondrial myopathy. It sounds like a possibility with the multi system involvement.Take care and big hugs,Dawn Anich Quote Link to comment Share on other sites More sharing options...
Radha Posted December 2, 2004 Report Share Posted December 2, 2004 so sorry to hear about all your troubles, my heart goes out to you, i'm not a mother, but it must be terrible watching someone so young suffer so much, hope things improve for the both of youradha Quote Link to comment Share on other sites More sharing options...
Ernie Posted December 2, 2004 Report Share Posted December 2, 2004 Hi Mary,I am so sorry for you and your daughter. It is so unfair. I just don't know what to tell you but I feel for you.Ernie Quote Link to comment Share on other sites More sharing options...
blackwolf Posted December 2, 2004 Report Share Posted December 2, 2004 Dear Mary, Here come those good vibes++===+++====+++++====++++Please be careful yourself and all my best wishes and prayers to you all.Blackwolf Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted December 3, 2004 Report Share Posted December 3, 2004 I AM STILL FREAKING OUT!!!! Thank you everyone for your kind words and encouragement!!! Marissa's drs have STILL not called me!!! I called yesterday afternoon as they PROMISED me that they would get back to me no later than yesterday evening.... But, NO CALL!! So, I called GI. The first RN said I had to call the other person that I go through for the cissipride... So, I called her. She found out that Marissa's dr hadn't even talked to cardiology yet!!!! I was fuming!!! Of course by last night, Marissa was miserable since she had been off her meds for almost 1 day!! The dr had also promised that she would also have called in a new script for her!!! Arrrrgggghhhhh!!!! So first thing this AM, I'm on the phone again, still no answers....!!!!! I've been on hold with cardiology for 25 minutes now!! ( I decided to just call them myself!). But, now I'm going to have to hang up soon because I have to go teach. Plus, OF COURSE, it's the weekend!! I'm sooooo angry. Marissa will probably end up in the hospital this weekend or miserable!!! Sorry for all this, but thanks for letting me vent!!!!! Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted December 3, 2004 Report Share Posted December 3, 2004 I'm with you Mary-----------I'm mad too!!!!! Hearing the treatment you are both receiving is making me sick. This is something the Doc should take very seriously.Yet they are treating it like she has a mild cold or something. My thoughts are with both you and your little daughter Marissa. I will also pray for your daughters outcome with her heart ( next ECG results) to be Ok and just a temporary set back. It might just be a temporary reaction the the medication. If it is---I hope you are able to find something else that helps with her digestion issues. I know there is research being done in that area---as motility issues don't just affect people with dysautonomia (which I pray your daughter doesn't have).It's a shame that problems connected with dysautonomia are not taken seriously by so many medical professionals. Do they think it's a disease we just make up? Do we really want to deal with this............................?If they think it's for attention---i'm sure there are much better ways we would go about getting attention------------------like drinking some margarita's and dancing on table tops. If only I were well enough to do that...LOL.Meanwhile---take a deep breath. I know it's draining to try to get some of these so called medical professionals to listen----------but we have to MAKE THEM LISTEN. Try to hang in there and know that all of us here on this discussion forum are rooting for you and your daughter.Julie :0) Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted December 4, 2004 Report Share Posted December 4, 2004 Well, I made a total nuisance out of myself trying to get SOMEONE to answer my questions about Marissa today!! No one could answer my questions or return my calls!! Boy was I getting frustrated!! Finally, about 4:45 tonight, I got her Cissapride coordinator to get another GI to talk to Cardiology and get her EKG read. Mind you I found out that it hasn't officially been signed off on yet because my daughter's GI did not bother to call Cardiology like she was supposed to!!! I was furious!! Anyhow... SUpposedly, now they're trying to tell me that the EKG is "normal". The variances on it are "normal"!! I AM SHOCKED!!! Needles to say, I am going to have a repeat EKG done in 1 week. They tried to explain it like a variation in HR or BP. I'm not sure whether or not to believe them at this point. I guess I'm going to wait to see what the EKG says on Friday and go from there??!! I just don't know at this point!! In the past, the ONLY thing Marissa's EKG EVER revealed was a R axis deviation. This was consistant. This time her EKG said: Low R atrial rhythm, R axis deviation, possible R ventricle hypertrophy, borderline prolonged QT secondary to QRS abnormality. That is a TON of changes in 4 months. Her QT interval went from 411 to 443. That's a big change.As to POTS, unfortunately, she has MANY signs already I think. She has migraines, SEVERE motility problems, low blood pressure, low body temperature, intolerable to heat, etc....Any suggestions.....???????Thanks everyone!!! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 4, 2004 Report Share Posted December 4, 2004 Dear Mary, first suggestion: take your right hand and place it on your left side. Then take your left hand and place it on your right shoulder. Take a deep breath in, then exhale and squeeze your arms tightly and feel yourself hugged! You were so courageous, you are the best advocate and your daughter needs that. You are so close to figuring it all out so don't loose hope now. The hardest part now is waiting for answers. However, you have lined up another EKG and that will give you time to do anything else to bring you peace. Have you considered taking the whole lot of new information to a new pediatric cardiologist for another opinion? If there was ANYTHING wrong, do you trust this medical team enough to tell you straight out? If you have doubts they are being totally open with you, then get to someone else! Try to settle in for a bit of peace for the night. Put on your coziest pj's and sip some tea. I do know how long the next week will seem...but use the time wisely. I think Marissa chose you for her mother because she knew you would go to bat for her! But now it's time to replenish yourself. Try to put this aside for just a bit. When you return, maybe you will see something more clearly than you did before. nurturing warm wishes to you and Marissa, tearose Quote Link to comment Share on other sites More sharing options...
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