8/31 Good news & bad news

The good news is Anya snapped out of it and has her full energy back.
The bad news is that it is 2 a.m.

8/30 On the upswing??

Anya is sleeping now after a long rough day. She is very tired but seems to be holding down food now.

So we saw a new GI doc today. Not "The" GI doc we plan to see but just did a first available visit. It was exactly what we thought it would be. He is essentially writing it off as a mito thing. As predicted, he suggested a nissen redo.

Apparently I am missing something here. Now I admit I know very little about human anatomy compared to all the GI doc we've seen, but how in the hell can they believe this is a reflux issue. I think they just hear a few select words from Anya history, assume they have the answer and lock in to their solution. They hear Baby, Feeding Difficulty, Failure to Thrive and Vomiting. They must think 'No Brainer, it's reflux' and then tune everything else out.

If it was reflux it would happen more during or directly after feedings, it would happen more when she was feeding laying down vs sitting upright, prevacid would have helped, it would have shown up on her PH-probe study. None of these are true. It also wouldn't have such a cyclical nature. It wouldn't just randomly occur every 7-10 days. My understanding of reflux is that it is an anatomic issue like the sphincter between her esophagus and stomach does restrict tight enough or perhaps the stomach can't expand enough to hold the volume. It is unlikely that her anatomy is changing.

Fortunatley we went into the appointment today knowing we wouldn't get any answers. We went in to get an EGG (video scope down the esophagus, stomach and into the duodenum) and colonoscopy scheduled so we can look for ulcers or other damage from all her vomiting. She's had the EGG before but we just wanted to check on it again. We also decided to put her back on Previcad so when she does vomit it is not as acidic on her esophagus.

We also found out today that out pediatrician didn't get exactly what we had asked for and we've been wasting our time giving her B-12 injections for the past 5 weeks and not Methyl-B-12. Regular B-12 is a simply vitamin you get from normal nutritional intake or that you can get from a capsul suppliment. Mythl-B-12 is much different... but Anya's sleeping, it's late and I'm tired... Good night.

8/28 Sick again (I'm sick of writing that subject line...)

Anya started getting sick around 9am. Unlike the last two episodes, this one was more typical. She hasn't been able to hold anything down all day (and continues as I write this at 11pm), and she has been very lethargic. She was actually up all of last night with a continuously running nose and coughing but she held her food down fine through the night.

So now what... As you can imagine, we are getting more and more frustrated and concerned. We decided today to find a new GI doc that actually doesn't mind doing what he is paid for (sorry I'm a little bitter) Anya has seen countless GI docs at Childrens and they all seem to just give up and blame it on the Mito issue. They might be right but I don't want to assume so and someday have an autopsy prove them wrong.

Their last suggestion months ago, which is where we gave up on them, was to place a J-G tube (or is it G-J, I forget) which is basically like the g-tube she has now but place lower in the digestive track, in the juejunum. This would bypass the stomach altogether. Or to redo her Nissen (re-tighten her esophagus). Either option, in our minds, is not the way to handle it. Sure, we could perhaps even sew her lips shut to stop her vomiting but the underlying issue still remains. Anyway, we got the name of a good doc that reportedly digs and digs until he knows exactly what is wrong.

What else.. Oh yea, we got some of her lab work back for mineral testing in hair samples. We speak with her PCP next week for interpretation. I don't what to say much about it until we know more but the results were abnormal with several elevated heavy metals. This likely indicates her bodies normal function to excrete such metals (which we all do daily) has been compromised. This system of sulfation and methylation is what we been working on with supplements lately.

8/27 Update...

I just wanted to give a quick update here.  Since the last entry Anya did have one more episode last Wednesday (8/22).  It was different thought, she just puked once in the late morning but got herenergy back right away and seemed to do okay. Then around 4:30 she did it again...  No big deal I suppose. 

 

I appoligize for not offering more updates sooner. It's been a busy couple weeks with not much action as far as Anya's concern (no progress nor regression).  I do have a lot to say jut not the time to write it all.  I feel like we've learned a lot recently.  The USAAA (autism) conference was in denver a couple weeks ago and although we couldn't attend do to a lack of childcare we did get copies of several of the speakers presentations.  The was a lot on biomedicine and hyperbarics.  Very good stuff.. Now I just wish we had an autistic kid...

 

Anya had a swallow study done this morning that she did okay on (I'm being generous by giving it an "okay").  She asperated quite a bit and didn't show any good consistant swallows. She also unfortunately didn't cough with each aspiration which is not a good normal response.  On the bright side our speech therapist was there and felt Anya offer some good other clues on when she ishaving a hard time.

 

Other than that, all is well...

 

Much Better

Anya started feeling better Monday afternoon, so that was a very short to be sick!!!! She was able to hold food down by Monday night, which is great seeing she is very thin! Not sure why she bounced back so quick, but we are very grateful for the fast recovery. We are trying some new things with her diet, hoping to get her gut working properly which is one Anya's biggest problems. When the gut doesn't work, the brain can't work nearly as well so that is our first priority. I just ordered a new blender and am hoping to make most of Anya's food using natural, fresh, organic real food. I think that will really help her body.

 

My parents and grandparents are flying in today. We are so excited to see everyone and have the kids spend time with great grandma and grandpa! Have a Happy Friday, thank you for all your support!

8/12 Sick again

7 good days have passed and she started vomiting around 6:45 this evening. She had a good day, zero warning signs. One moment she was her normal self, seemingly happy and okay, and then boom it hit her. Vomiting every 10 minutes since then and completely wiped out, instantly... We immediately started her on zofran and pedialyte but it's 11pm now an hasn't let up.

Anya has long ago fallen well off the bottom of the charts in weight (she's stll only 15.4lbs). We continue to get more and more concerned of her malnourishment. We've got some leads on what to do. It's unfortunately not as simple as just feeding her more. We are learning of what may be one of the underlying issues from several different books and now it is a matter of implementing certain diets and see what happens.

Holding Food Down

Anya finally started holding feeds down last night around 8:00. She was up all night, which she usually is once she snaps out of these spells. Today she has been doing fine and is back to eating regular formula. Hopefully tonight will be the night we all get some rest!!!!

Doing Better

Anya has been doing a little better today. She has managed to keep down 400cc's of electrolyte water and some baby food via G-Tube. She stopped vomiting around 3:30 am and just seems very tired and lethargic. So hopefully we will get some rest tonight and start the week off better.

 

 

8/4 Sick again :(

After a couple of really good weeks Anya woke up vomiting again this morning.  We took her to the ER right away this time rather that waiting a few days to see if the rehydration would nip it in the butt.  Unfortunately it didn't make a difference and she has continued to get sick through out the day.  We did test her ammonia levels this time and they were normal.  Normal is a good thing but just adds to the confusion...

 

On a positive note, we met with a new pediatrician (Dr. Debby Hamilton, Holistic Pediatric Consulting in Boulder, www.holisticpediatric.com) on Thursday and are very excited.  She is awesome!!  She is extremely knowledgeable about the entire system, which is what we need with Anya's GI, Neurological and Immune system quarks.  She really seems ready, willing and VERY capable of taking the bull by the horns in helping us figure out what is going on with Anya. 

 

Our initial one-hour consult lasted three hours as we told of Anya's long history and current symptoms.  She educated us on a lot of biochemistry and Anya's previous lab work-ups and talked what she'll be looking for in her 'investigation'.  Although Katie and I have been reading a lot on such subjects, this is an overwhelmingly complex faulty system we are dealing with and we weren't even getting close to understanding. It was clear from our discussion that Dr. Hamilton has a firm understanding of this system as a whole. 

 

On another positive note, on 8/1 we started Anya's Methyl-B-12 injections...we'll see what happens..  

Just an update on Anya's ratings

Anya has been doing really well and I think she deserves a new grade for her smiles. She smiles so much throughout the day! I would give her at least 7. She smiles countless times throughout the day and is VERY happy while eating. Absolutely loves to eat!!!! Yay, Anya!!! Keep those beautiful smiles coming :)