impedance ph probe,endoduodenum manometry next wee

[Anonymous]

Hello again. Sorry it’s been so long. We have been in the hospital twice since my last post (last time was about a month ago and the below test should have been done then, but that was a nightmare admit, too long to tell). Ds is now 2 1/2 years old. So, short verision, if there is one in our children’s lives: We are scheduled for an Impedanace probe (well, I am going to confirm it’s not just a ph probe tomorrow-if we are doing this lets do it right), MRI of his head (my first reaction-what!, but they say increase intracranial pressure can cause GI problems–so I said ok but only if..)MRI belly too. Then they want an endoscopy with tube placed for endoduodenum manometry. So, we have done the endoscopy before and know what to expect. But any tips for the Impedance and the endoduodenum manometry? Anything I shoul make sure they do or don’t do?That is the part he will be awake for and the most upset about a tube in his nose. Makes me sad, but I know it must be done.

So glad I have already done a lot of reading up on these things. I just read last night about the poor child who suffered through a probe and may have had the probe in the wrong place. Thank God her smart Mom new to ask for xray to check placement the second time and it WAS in the wrong place.

We are scheduled to have the Impedance probe placed Tuesday Jan 8th at noon and come home, go back to hospital Wed Jan 9th 8am to start with MRIs and while still asleep do a scope with biospies and place tube for the endoduodenum manometery. We will stay the night Wed and Ds will drink/eat (i pray)for the manometery on Thursday. The manometery is to make sure ds doesnt have a motility issues. The motility “specialist” GI doctor at Cook Children’s Ft Worth that is ordering all this first said ds doesn’t not sound like he has motility issues, but after a bit of “discussion” with me and reminding him (oh can’t remind if he didn’t bother to read the chart that was sent to him) that ds had a “redundant duodenum” on his Upper GI, he now says, oh well you can get something called megaduodenum with motility issues and agreed to do some test. The doctor also said lots of other completely stupid (sorry, but no other word to describe it) things ds might have. I helped him see that I wasnt even going to hear that .

We are to be off Prevacid for 5 days prior and expose ds to “all kinds of foods” starting a week ago. Ds does as good as he gets with baby food pears and beef, cheeiros. He never really has a great day so I can say oh, there is baseline and now I can try a new food. I do anyway, but it doesn’t really seem like it’s a particular food as it is the quanity or bulk. But I have been giving baby food sweet potatoes, carrots, and plan on chicken, ham and squash. QUESTION:Ds has never had dairy even when I was breastfeeding, has not had egg, nut or soy since about 8 months old. My gut says don’t give him that because he has had all these problems without it and if I give it to him now and he show a reaction on the scope, they will say, see it’s a food intolerance. I saw where the impedance probe can show if it is allergic reflux vs acid vs non acid Should I give he food he hasn’t had in over a year and still having problems?

A little vent: I am so tired of these doctors all making stupid choices for our children. No xrays to confrim important things, jumping to surgery for a 4 month old to place a g-tube before even a gastic emptying scan is even done, or maybe it’s food intolerance even though we have tired every food know to man and ds has problems (even on just Elecare when he was younger) or THIS is my favorite, lets make sure they don’t have autusim or sensory disoreder before we make it a GI issue! Couldn’t possiblity be the pain and lack of sleep causing speech delays. I basically had to “prove” why my son doesn’t have this or that before the GI doctor would order these above test that should have been done months ago . After we “talked” the doctor just got up from his chair and said we will do some test. I had to find out from his nurse what he ordered. This is the 4th GI doctor we have seen, so guess I should be happy we are finially getting something done.

Thanks for listening and all the past advise.

Blessed Mom0710

ds dob7/10 silent reflux, food intolerances ?, subglottic hemangomia

prevacid 15mg twice a day, miralax, propranolol for hemangomia

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