RE: reflux medications/Heidi

[Guest guest]

Heidi,

Unfortunatly she needs all the medications she is on. Thankfully we live 20 min. from Cleveland Clinic, so she has a great team of doctors, so all the doctors check with the rest when new medicines are added. I just look at our countertop some days in amazement with the amount of stuff she needs. I guess we are fortunate, though, now her problems are easier to deal with than before. She now is almost developmentaly normal, except speech. Before she was so small and sickly. 1 1/2 years ago we were still dealing with the high probability that her liver would eventually fail. How is s liver affected? Dr. Cohen has told us that liver disease is actually pretty rare with mito. I think he told me that he only has 5 patients with mito and liver disease.

I will have to ask the GI about venting, if she thinks it may help. She has a mic key type button, so I would need supplies to try this. She has the extensions and syringes but that is all we keep around the house. I do wish we had a boulus bag or something to help with fluids when she needs them. It can get very tiring pushing 3 ounces of pedialyte every hour, when she has a virus.

How long has had the Hickman? I worry some day that Grace may need one, but that won't be for a long time. Does she also have alot of problems with hypoglycemia? Grace has problems maintaining her blood sugar, but alot of it is just due to the autonomic dysfunction. We have recently started her on a high complex carb diet, and it really seems to be helping. Also, since she has been on the Miralax she has begun to eat better so this seems to be helping too. She has even slept throught the night twice this week!

The migranes are not a fun encounter. We started noticing them right at the begining of her last "brown out". She became very fussy for days. She also starting banging her head into everything hard she could find. One day it got to a point that she would not even move on the couch. She just sat there with a blanket pushed on the side of her head. We took her to the pediatrician, thinking it was an earache, and there was nothing wrong with her. I then called Cohen, and described what was going on, he told me instantly over the phone that they were migranes and very typical with mito. She now takes Periactin to prevent the migranes. The Periactin also has a great side affect, as it is also an appetite stimulant. This is why she, now, takes double the dose she needs for migranes.

Our girls do seem to have alot of similarities. Thank you so much for sharing about .

mommy to Grace (also, , , Bre-Anne, and a little boy in Sept.)

[Guest guest]

,

Yikes! 11 meds? Has the ped gone through them to figure out if side

effects or interactions could be contributing to the problem? We've run

into this before, like finding out that flagyl interacts with phenobarb and

bicitra can't be given with any GI meds. It's a nice thing to keep tabs on,

especially if Gracie has GI problems.

Venting involves hooking up an extension tubing and a bile bag or urinary

drainage bag. You could also vent with a chimney (syringe attached to

connecting tubing and taped to an IV pole) or just by putting a 60cc syringe

on the end of the connector and letting all the air out. It depends on if

you're venting air or stomach contents. If you vent stomach contents, then

you have to replace the fluids and electrolytes somehow. What type of tube

does Gracie have?

is fed through her J tube and we vent her stomach continuously. She

refluxes from her intestines into her stomach and then aspirates, despite

having a nissen. We drain the bile and formula that comes up from her

intestines to prevent her from aspirating it. At least, this is the plan.

She came off TPN on Thurs last week and has been slowly running down. Last

night she drained about 1/2 to 3/4 of her feedings back up through the g

tube. Fluids are doing OK because of the IV hydration, and sugars are

hanging in. We just have to really try to get a long break from TPN because

of her liver problems.

and Gracie have many similarities, from what it sounds like. How

did you know she was having migraines? How are they treated?

Take Care

Heidi, 's Mom

>Message: 10

> Date: Sun, 20 Jun 2004 19:11:11 EDT

> From: albregra@...

>Subject: Re: RE: reflux medications/Heidi

>

>Thanks for your insite. You sound like you and your daughter have really

>have been through the ringer on the GI problems. Wow, I really hope we do

>not

>have to resort to IV meds, yet. We do think that the majority of her

>recent

>problems are due to motility. Her GI and I have yet to discuss testing to

>see

> " for sure " . So far it has just been an assumtion that it probally is slow

>motility, (my GI consults with Dr.Cohen alot.) She has the pretty obvious

>signs,

>eating once a day, constipation, and vomiting up food that has been eaten

>8-12

>hours earlier. She does have a G tube, but she does eat orally. So far

>the G

>tube is primarily for medications, and the occasional need for extra

>fluids.

>I keep seeing people talking about " venting " the tubes, but I have no idea

>how

>to do that. We do not even have a pump for her tube, we don't want it to

>be

>that " easy " to just resort to tube feeding until it becomes necessary. I

>do

>not like the idea of adding more medications, because she takes so much

>already (I think current count is 11 different prescriptions). I will be

>looking

>into something more for motility, though. Maybe that way we can cut down

>on

>other things, like high doses of Periactin for appetite, and Miralax for

>constipation. Thanks again.

>

>mommy to Grace, 24 months, nonspecific mito, g tube, asthma, liver disease,

>tons of GI problems, migranes, lots of autonomic dysfunction problems,

>hypoglycemia, speech delays, and she loves to get into anything her little

>hands can

>get ahold of. (I just love 2year olds.) I am pretty sure I probally missed

>somthing, I don't usually include all of her problems at the end.

>

>

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