The Amazing Owen
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Rant all you want! We're here to listen and tell you, 'Way to go Michelle! I love the way you don't let any doctors Hee-haw you around!' I wish so badly Owen could see Cayman's Naturopathic Doctor. He would be able to tell you why this is happening and what to do for it! I hope you can find some answers very soon!
Comment By Kristen At 3/21/2009 12:07 AM
Watch out for Mother Bear! It's a good thing you're aggressive. I think that there are many times where common sense wins over a medical degree. That's why they call it the practice of medicine, they don't really know what they are doing. I'm proud of you for figting for your baby boy. Owen has a great Mommy!
Maria Nozzi
Comment By Maria Nozzi At 3/21/2009 8:18 AM

Thanks for the update! Your page has been so helpful. I just ordered the carseat you got for Owen. Kealen is about to outgrow his infant seat. How fast they grow!

Have they mentioned Hirschsprung's Disease? Kealen has that and one of the doctors says that it is connected to the Hydrocephalus. Kealen's was severe because they discovered it while still in the NICU, but it can be discovered much later in life. The patient usually has a long history of constipation problems. Kealen's x-rays showed his poop was backing up and a biopsy confirmed the diagnosis. Just thought I would throw it out there. You may want to have a surgeon look at Owen's x-rays and GI study. They may also be able to help with the reflux.

Best of luck. I love how you fight for Owen.

Comment By Emily At 3/21/2009 5:08 PM
Thank God we do not have any Dr.'s who fall into category #1 (we've gotten rid of a few too), but it's nice to know to watch out for them! Sounds like poor little Owen is having a horrible time. I really hope you get some answers soon. Great job standing up for your son! Your children are both just gorgeous. I'll let you know how the craniofacial clinic goes for us tomorrow!
Comment By Sherri At 3/22/2009 2:48 PM
Michelle -

For Owen's sake I hope the lower GI series shows something fairly obvious and easy to fix. For both your sakes I hope you get a 'Group B' GI doc appt soon. (I don't think we need to speculate on what the 'A' in Group A stands for). Erythromycin is pretty rough on the tummy to start with, taking it all the time has got to suck. Owen is extremely lucky to have a family who are so good at pursuing what is best for him.

(BTW new post on piano = great!!!)
Comment By Val At 3/23/2009 7:47 AM
Don't you hate when our kids get stereotyped?? And rant all you want! We all need to some times. Not only does it make you feel better, but we also can validate it and know that when it happens to us, that we too can be strong and stand up to them! Too often, I think people think doctors are the 'end all and know all', when they are just HUMAN BEINGS with more education. They don't know everything, and we know our children best. Grr... I'm getting upset just thinking about it.

Way to go Michelle! Way to be momma bear!
Comment By Jill At 3/23/2009 8:20 PM

Original Entry:
A trip to the GI

OK before I get to the doctor story, I wanted to write about my post on the  on the family blog a few days ago where Owen was saying "Mom".  I had a few people ask why I wasn't more excited about it since we've worked so hard for it.  I guess the reason is that it's so hard to know how much importance to put to it when it's something he only does once in a while.  Given the proper usage (he only does it when I am there) and the fact that it is a combination of sounds that he does not make when he is just babbling we are fairly certain that he knows what it means and is doing it intentionally.  My heart certainly soars whenever I hear it, it's just that I hate to get too excited when I can't be sure that it's real.  The real excitement is that he is making more and more sounds that sound like real speech and less like aimless babbling. 

All right, it's been a while since I've put a good rant on the website, but today it's time.  Prepare's a long one and there is a lot of discussion of have been warned...ready?  Owen has reflux.  Really, really bad reflux that has gotten steadily worse as time has gone on.  He also has really, really bad problems with constipation - if you have been following us for a while you have read about these issues before.  The reflux had been reasonably well controlled after we started the medicine last summer, but it has never gone away and lately it's just a constant thing.  We also suspected that his constipation was so bad that it was actually causing problems with his shunt this past January.  His shunt drains into his belly and the poo was taking up so much room that it was causing an intermittent blockage of the end of the catheter. His shunt also had too high of an opening pressure and needed to be replaced anyway, but the constipation was aggrevating the situation.

The pediatric gastroenterologist - who will henceforth be known as the GI so that I don't have to type all that - has been very responsive when we have called with an issue, but his answer is always the same - give him more medicines, enemas, suppositories, etc.  Sometimes the regimens are quite extreme with enemas every day for days on end and huge quantities of Milk of Magnesia and magnesium citrate.  It always works to clear him out, but then he backs right up again in a few weeks even with maintenance doses of Milk of Magnesia.  They did do an upper GI study last summer where they saw the reflux in action and noted the constipation, but they have never done a lower GI or bowel study to find out why he is constipated. 

Lately we've been in a routine where Owen will do just fine and poo every day for about a week and then he will back up.  At this point he won't be able to sleep and will spend half his time arching his back and writhing in agony for a few days until we can get it cleared.  He is missing therapy sessions because he's just so miserable.  So I called and got him an appointment with the GI, which we had to wait three weeks for.  Grrr....

So today was our appointment.  Owen hadn't pooed yesterday despite getting his maintenance dose of Milk of Magnesia plus an extra one.  He woke up at 4:30 am and couldn't go back to sleep and seemed to be in pain.  He was very cranky and miserable when we got to the doc's office.  The doc listened to my description of Owen's issues and then immediately began to talk about more drugs and more enemas and such. 

The doc thinks that he is just never clearing it all out, even when he does poo.  That it was like a hose with a rock in it where water might be able to get around the rock, but that the rock is still in there.  I said that's a nice analogy, but it doesn't explain how the rock got in there in the first place.  I explained that I felt it was time to be a bit more aggressive about finding out why it was that Owen was so constipated.  He proceeded to show me a picture of the last shunt series that was done in January - which also happens to show the whole abdomen so you can see the distal catheter - and pointed out all of the poo in Owen's intesine and said, "See, he was really backed up." To which I replied, "Yes, we know, they had to give him an enema before they could discharge him from the hospital for the shunt revision because he was howling in pain and they couldn't tell if he was OK to go home or not.  The question is WHY was he so constipated???"

And then he did it.  The absolute worst thing that a doctor can say to this particular Mom.  He said that he hadn't bothered with any further studies because children with Owen's "neurological status" often show these types of problems and he is used to treating them with this regimen.  GRRRRR!  I calmly explained that this particular line of reasoning has been used in the past to tell me that he needed seizure medication (because all kids with hydrocephalus have seizures, right? ), to tell me that he'd be a vegetable and to tell me that he was going to die.  All of which proved to be untrue of course.  So I explained that medicating a child to the point where the medication itself is causing massive cramping and pain without making sure that this particular child is in fact suffering from the general problems that you have seen in others is, as I put it, "unwise". 

They are assuming that he has low muscle tone in his intestine and therefore can't move it through.   He doesn't have low muscle tone anywhere else, why would he have it there?  You need a lower GI study where you watch the muscles in action to verify this.  My bigger fear is that there is something else happening that he is missing because he is making an assumption.  He may be absolutely right, but then again he might be missing something that needs to be taken care of.

And even so, the current medicinal regimen is unacceptable.  We have to give him 1 ml of Erythromycin 15 minutes before he can eat or drink anything.  If we don't then either he refluxes it terribly or he outright throws it up.  We can only give him Erythromycin 4 times a day.  So what do you do when it's latein the day when it's 80 degrees out and he is madly signing for a drink but has already had all the medicine I can give him?  Do I let him dehydrate or do I let him have reflux all night? This little scenario happened just last week and it's not going to get better as we head into summer.  In the end I gave him a small drink and split the difference.

In the end I got the study that I was asking for.  Owen is scheduled for a gastrograffin enema next Wednesday so that they can watch things move through.  The doc was polite, but I definitely got the impression that he felt he was just humoring me.

In my experience with the plethora of doctors that Owen has seen, there are two categories of medical professionals.  The first says, "Look, he has hydrocephalus, he has brain damage, there is only so much you can expect for his life anyway so we'll just do the easiest thing and move on."  The other group is more like, "Yup, he has problems but we are going to make sure that we are doing the absolute best we can under the circumstances."  Group A doctors get booted fairly quickly by Mommy and the GI just moved into Group A today. 

So I called down to Duke to see if we can get him in there for another opinion.  Duke prides itself on Group B type doctors and we owe a lot of Owen's success to them.  They said that the first available appointment is in June, but that we should have his records faxed down now and if it seems like there is something they need to do sooner then they will try to get him in.  I will get the records sent down next week, after his test.  I know I can't get him to Duke sooner than Wednesday so we might as well see if there is anything obvious there before making it clear that we are going elsewhere by requesting the records.

Mommy will not accept that her little boy has to suffer because someone thinks it's not worth the effort to make sure they are doing the best they can for him.

OK, rant over.  Thanks for reading.  I promise to keep the rants to a minimum, but we all have these days.

In better news I will post a few pictures that I took about two weeks ago when we had a beautiful warm spell.  It was perfect weather for getting outside and I got a few pictures of Owen and his sister.  As you can see, Owen's sitting skills are getting better every day.  We used to have to take a quick picture and hope he didn't fall over.  He would also try very hard to lay down as soon as you set him up.  Now he will usually sit for a few minutes before even attempting to get back down.  Have a great night!





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