A good visit.

Yesterday was our appointment with Dr. K. It was the most positive/productive of all our visits. Unfortunately, Owen has lost two pounds since Jan. 10. And one of those has been in the last week. I think this got his attention from the get-go. Owen is supposed to be gaining weight, not losing it! Dr. K immediately jumped in with questions trying to ascertain if O had had a stomach bug. Nope. He had had congestion pretty much since January so I had taken him to the Ped. last week. They wanted to put him on meds but were hesitant so they told us to give him Zyrtec. Dr. K interrupted me and said he doesn’t want O taking antibiotics. Hello? Why are you just now telling me this??? Anyway, that is a battle I wasn’t willing to start so I acted surprised and allowed him to move on. Dr. K seemed okay with the Zyrtec until I explained to him what happened last Friday.

Last Thursday night we gave Owen Zyrtec as directed by his pediatrician. I don’t recall it being a particularly difficult night. He went to school and everything seemed fine. But when I picked him up, he just didn’t look right. His face was slightly swollen, he had bright red eczema patches on both cheeks and he was not responding to anyone. His eyes were glazed over … he was not acting like O.

It scared the crap out of me. But, it wasn’t “new”. We had seen this behavior before. Back in August at his 10 month check-up, I bawled in his pediatrician’s office because I was convinced my son was autistic. The pediatrician was concerned with some of his behaviors but he wasn’t willing to diagnose him and basically told me there was nothing I could do. Fast-forward 7 months and I no longer think he is autistic. I do, however, think some foods cause him to act that way. And of all his reactions, this is the one that scares me the most.

Once I described this reaction to Dr. K, he said next time it happened, I needed to take Owen to the ER immediately. The doc agreed that it could have been the Zyrtec or he could have gotten into something at school, either way it was bad, a sign of something much worse and I needed to have him checked immediately should it happen again.

I shared the article I mentioned in my last post with Dr. K and he agreed to do a colonoscopy to see what is going on in there. But, he is more concerned with his liver right now so that is where we will focus in the immediate future. We had another round of blood work (that is not getting any easier) and are awaiting the results. A liver biopsy may be scheduled or another upper GI endoscopy. Dr. K wants to go back and look at O’s liver’s reaction to certain food proteins.

We were told to take him off Coconut milk and to get him back up to 40 ounces of Nutramigen (this means more night feedings because we won’t want to take away his solids during the day). We were also told to start giving him DuoCal, a powdered nutritional supplement to increase his caloric in-take.

We have a meeting with his school on Monday to make sure everyone is doing everything they can to give Owen a safe environment.

And, we discussed vaccines again. While at the pediatrician’s office last week, they pushed for me to vaccinate again and pushed that I get the approval from Dr. K. Nope. Dr. K won’t give it. He says the only way he would allow Owen to be vaccinated is if we met with an Immunologist. While I am totally okay having Owen unvaccinated for now, it is a concern in the back of my head. Am I hurting him by allowing him to remain un-vaccinated? But, I am scared to death to inject him with that stuff. It will be so nice to have someone look at O and say what is safe and what is unsafe for him. I didn’t even know this was available. And frankly, I think it should be available to EVERYONE! Sadly, it is a fact that vaccines do cause harm to some people – why else would they have a vaccine fund to help those injured? Most parents just don’t know if their child will be okay being vaccinated until it is too late. But they are pushed on us for the good of society. A sacrifice for the greater good they say. Hum? Anyway, I am so grateful that Dr. K is making this available to us. So grateful!!!!!!!!!!!

As soon as I know more, I will post more. Have a great night!

More doctors...

More Doctor visits…

My Aunt forwarded me this story. I want to start off by saying I in no way think Owen has it this bad and I am forever grateful for that reality. However, I do think he has a more mild version. And I am frustrated to no end for this mom, me and so many others out there that are not getting the help we need. I have heard of FPIES before but I dismissed it…until I read Landon’s story. Now, I am not so sure. Owen has exhibited every symptom Landon has. The only difference is that Owen is thriving. That wasn’t always the case. He was born underweight and remained that way until late January of 2010. I have said this before and I will say it again, Owen is thriving only because of the Nutramigen AA (elemental formula). A friend recommended this to me after I cried to her about Owen (note our pediatrician didn’t recommend it) and within a day of putting him on it, he was a different baby. Just because someone was kind enough to point me in this direction and just because we had the financial ability to pay $700 per month to feed our baby, it does not mean that he doesn’t need a diagnosis. He is still sick. If it weren’t for this formula, I am confident Owen would have been classified as failure to thrive. After starting the Nutramigen AA he jumped to the 90th percentile in a few weeks!

So we are going in for a follow up with Dr. K on Wednesday. I am scared. I plan to walk in armed with this article. I am praying he listens.

Then next week, I am interviewing a new pediatrician. We like our current one okay but I think if we found another who was a better champion for Owen’s cause, life would be a little easier (or at least it would be a little easier to get a new GI doc or to get the one we have to listen to us).