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Bad News for Marissa again


Guest Mary from OH
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Guest Mary from OH

Oh my dear friends.... I am asking for prayers for my daugher.

Tears are streaming down my face as I write this. I can barely see. Interestingly enough I have had a bad week anyway with migraines, etc. And I even forgot to take ALL my meds one night because my head hurt so bad. I found them on my nightstand in their cup the next night. It really explained why I felt so poorly that day!! LOL!! Anyhow.

My daughter, Marissa (age 6) if you remember is going through a REALLY tough time again and I am beside myself. Her EKG came back abnormal AGAIN!!! Of course it took the drs. a whole week to read it and then they're all panicked by how bad it is and I have to rush in this AM to have another one done! If you remember, she has to have EKG's done every 2 month's because she is on a medication that has been removed by the FDA. She is on it because of her TERRIBLE motility. She is in a compassionate use program so that she can get the medicine. It is very involved and overly "safety conscious". This is also a medicine that she was priorly on when she was younger prior to it being pulled by the FDA. There is NO other medication available that preforms the same functions!!

I am upset (again) on SO many levels. At first I wasn't at all, because I assumed we were going through the same thing as last time. This medication has the possibility of effecting your QT interval in your heart. However, after insisting on a cardio consult after the last fiasco, I learned more about this situation. Apparently this number can fluctuate widely quite normally + or - 40. Her numbers were all well within "normal" and nothing to be concerned of. I had taken her to an electrophysiologist hoping to also get answers about her POTS symptoms and the possible dangers of combining it with this medicine "if" she has POTS for sure. She has MANY of the symptoms now and we are fairly certain that she has it, but they also do not put young children on the TTT. Her medication she already takes for her migraines is the medication she would be put on per the cardio. So it would just be a matter of "tweaking" doses, she told me.

But, I'm NOW terrified. I don't want there to be any damage to her heart. She NEEDS this medicine. I don't want her to continue to take it if it is going to hurt her... etc.

Oh... the abnormalities (besides the one's that are always there and are benign) are: prolonged QT interval (which we have had and know about), low R atrial rhythm (pretty sure I have this and it's POTS related), and blocked premature atrial complex (I think a supraventicular arrhytmia - possibly POTS related?).

Waiting for the new EKG results from today.

Thanks for the prayers!!

:ph34r:

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I am so sorry you are going through this! As the mom of a pretty sick boy. Well he got really sick at 11 and is now 23, I now the agony of having to deal with these things on top of your own stuff! I will keep you in my prayers and hope that they only find benign things and she can continue her meds. Nothing is worse than having an ill child....morgan

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Mary - I am am sorry that your little girl is going through so much... I will keep her in my prayers... Please stay strong...we are all thinking of you both.

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Mary

I'm sorry for the **** your going through right now. Please make sure you get the results no later then tomorrow so your not fretting all weekend. In fact it's roughly 15:40 your time so I would probably still call today and see what they've come up with. Nail them down in a plan of action and prognosis!

My prayers are with you and your family.

Steph

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Many prayer for your daughter, you and your family!!!!! I agree with the earlier post. Call themand ask for the results. Don't wait unless they really don't have then, which they will tell you. Obviously you are a very strong woman(as I believe WE all are). Keep us posted, as she is part of this family. I pray daily for us and will add her to our clergy prayer list. Can't hurt!!! Miriam :(

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Guest Mary from OH

BAD NEWS!!!! :(

I got the results (kind of) of the EKG today. And they have taken her OFF her medication. Her EKG was very similar to the one from last week. Just from missing ONE dose of her medication, she already started to leak stool from her "minnie" (read Mik-key - she calls it a minnie "cause that's what girls have"). You are not supposed to leak stool from here as it is supposed to be a one way valve. The pressure and amount of stool in her GI tract that has built up already has caused this to occur. She has her first Irish Dance competiton on Saturday, out of town. I am a wreck!!

She has her cecostomy as a result of severe dysmotility issues, gastroparesis,

hypomotility, mild neuropathy in sm. bowel (aka CIPS - Chronic Intestinal Pseudo-obstuction Syndrome), redundant colon,and abnormal lack of contractions while eating. She also has visceral hyperalgesia, GERD, migraines and abdominal migraines, a frequently prolapsing cecostomy, EKG changes and probably POTS and ...who knows what else.

I'm soooo frustrated because the dr's "plan" is to keep her off the medication until further notice (until when or permanently I don't know) and just basically continue with her irrigations as normal. This is totally unacceptable!! And I told the RN this!!! HOW WILL THIS HELP HER?? If her output drops below a certain level, I can increase one of her laxatives; BIG DEAL!!! This does NOTHING for her gastroparesis or other problems. Her cecostomy "cleans her out" from her cecum to her anus, using the cecostomy as an antegrade enema site since she cannot stool on her own. Period. How am I supposed to get her to eat when her stomach doesn't empty? Her gastric emptying time is over 24hrs??!! WHAT are they thinking??? If only missing ONE dose of the medication has backed up her system this severely, what the heck do they expect me to do??? I am SO frustrated!!! Why does this stuff ALWAYS have to happen before the weekends. PLUS, her dr is also going to be out of town for the weekend too!!

I'm so sorry to vent. But, she's all I have and actually this is POTS related....

Thanks everyone!!

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Mary, I am so sorry for what you and your daughter are going through. She is so young to have all of these serious health issues. My prayers are with you and your daughter. I wish we could get more compassion out of some of these doctors. If they suffered only a minute amount that all of you are suffering, they would be on call 24/7 and maybe find more answers. Please let us know how your daughter is doing. Linda

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Guest Julia59

Oh Mary,

I'm so sorry for you and your daughter. How terrible to have such gut motility at such a young age. In Toledo, Ohio we had a couple of young woman--20s that had terriible slow motility. One of them had a pace maker put into the abdomin at the Cleveland clinic. It worked! I haven't talked with her or her family for a while, but she had some pretty bad autonomic neuropathy that was affecting her gastric emptying.

I wish you both all the best, and I hope you are able to get help for your daughter.

I'm praying---and sending blessings.

Julie :0)

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Guest Mary from OH

AARRRGGGHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :(

We spent the night in ER!!! Her irrigation went HORRIBLE last night!! Fluid was going everywhere (not supposed to happen). She didn't stool (frequently happens). I went to change her button since it was so soiled and everything and seemed to be having problems anyway (they're about $800 a pop!!). Then all #$%^& broke loose!!! I went to remove the water from the balloon that keeps it "inside" her and nothing came out in the syringe. (not a good sign). But, it acted like there was resistace or something there. The syringe would fill up with air and shoot back in! It was strange. I kept trying. My husband tried. We just couldn't get the fluid out to get her button out. So, I decided to give the button a little tug to see if perahaps the button had lost its fluid. I tugged lightly and, no, it was definitely still "attached", to "something" at least. So, we were presented with the problem of HOW to get it out to change it. Of course it's my poor daughter's bedtime and I've never had a problem changing it before. So, we get her ready with all the stuff to take her to our local Children's satellite Urgent Care. We called ahead so that she wouldn't have to wait. They told us they couldn't do it and we would have to go downtown. I argued with them on the cellphone awhile. We turned the car around and went downtown (almost 30 min away). I had already paged the GI on call to have them know we were on our way. When we got there, they still had no idea, but somehow I managed to get us back quickly. We still waited a while, but we were in/ within about 3 hrs. A RECORD!!! First, the dr (read resident) couldn't get it to work either. Then she kind of wrestled with it a while and she said she forcfeully pushed on the valve and was wiggling too and finally got the fluid to come out!!! It was funny because she had never even changed a button before and had NO idea what a cecostomy was for. I got to play teacher!! Of course, I'll get the bill. I furnished all the supplies too!! And put the button in!

But, thank God, we're home, Ok.

Thank you for your continuing prayers. Marissa's motility is NOT doing well and she's slowly stopping eating. It is just as I expected.... It's going to be a LONG weekend!!!

Thanks again EVERYONE!!!!!

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Oh Mary I'm soooo sorry :) Reading your posts make me so sad. My heart aches for you and little Marissa. I wish there was something I could do. It's awful when we feel helpless especially when it comes to our chlidren. You are both in my thoughts and prayers. Please keep us updated and I sure hope your weekend goes ok.

You know you can call me ANYTIME you need to talk, so please don't hesitate. Hang in there and remember to take care of yourself as well(the best you can in this situation). You don't want to get in a POTS hole yourself.

Please call if you need me.

Love and hugs,

Danelle

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Mary, my heart goes out to you and Marissa. Life shouldn't be so hard when you are a child. I will continue to keep her in my prayers that someone might find a solution for her.

Take care of yourself too. I can only imagine how difficult this is on you and your health.

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mary,

sorry to chip in so late here...

i have been thinking about you always...and hoping things were going to be smoother sailing...and now this???

i don't know what to say...i don't even know who this is harder on...you or marissa.

when i see the pain in my parent's eyes, it breaks my heart as much as their hearts are breaking...

hugs to you...we're out here listening!

emily

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Oh MAN Mary, I am so sorry this is happening to Marissa and you! You will be in my thoughts. I'm wondering if she is on propulsid. My Gi doc has begged me to go to Canada as there is a drug very similar and works really well. I can't remember the name, but could find out if you like. I believe it's okay to get meds from there, if they are unavailable here. But not sure :) . Anyway, hope things clear up soon and Gi can talk to cardiologist and figure out what's best for her! morgan

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Guest Mary from OH

Morgan,

Yes, it's Propulsid or aka Cissapride. The drug in Canada that's similar is Mottilum. I know exactly what you're talking about. They are closing the loopholes so that we cannot get it here through Canada now. But, we are sometimes able to get it through New Zealand or somewhere else. Thanks for thinking of us!! Motility problems ****!!

Off to her Feis!! I pray she holds up!! She just wants to dance!!

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Mary ,

I am sorry this is a little late but my prayers are with you and marissa and your husband. I hope this weekend goes well and that she dances her heart out ( not literally of course hahaha). I will be thinking of you. I am sorry but have you considered trying a traditional chinese medicine doctor to maybe help with the motility. I am not sure if it would help but if the propulsid is out then maybe try this. Also have they tried her on ocetreotide or they even tried me on erythomycin. Now I realize this all maybe stuff you have tried before so forgive me but just wanted to try and help. Anyway if none of this helps know I am thinking and praying for you!

with love,

Stacey

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Mary,

I hope you and Marissa can enjoy her dancing this weekend. I'm a mommy of a dancer too and I know how special it can be to watch. My heart has ached as I read your posts. Thank you for taking the time to share your advice with me. Please know I am praying for you and your family.

Roselover

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