Our journey through life with hemiplegic cerebral palsy and infantile spasms

Tuesday, March 12, 2013

Blood work results

Today we had a follow up appointment with Karsen's new pediatrician (whom I am now I love with... Not literally). We double checked his eyes to make sure his ear infections were done and over with, and also went over the huge amounts of blood work Karsen had done to see what we could do next about his constipation (which goes hand in hand with him having a lower immune system). As soon as we get his constipation resolved his body should be able to absorb all the vitamins and nutrients required to fight off germs. That's the ultimate goal. It really gets old having Karsen get sick once a month. I'm not exaggerating when I saw once a month. I stopped counting after he was 8 months old (sick 8 times). Oh and by the way, he's sick right now too. :-(

After we went over all the blood work results, we had found Karsen is allergic to corn and oat. Oye! Both of those are in everything. The lab messed up and didn't run a milk test (we are trying to get them to run that one as well now). Our hope is after we cut out corn and oat Karsen's constipation will no longer be an issue. If not, next we cut out dairy. Even if the test results come back negative, the test isn't the most accurate and he would still have 50% chance of having a milk allergy. So, worth trying it rather than relying on a not so accurate test. Lets hope it doesn't come to that.

We also had our second round of his shots. If you haven't read before, Karsen hasnt had any vaccines because he was either sick or his seizures weren't under control. Now we are playing catch up, and being selective. The last thing we need is a vaccine bringing back those nasty seizures. For those of you research freaks like me and wondering what ones we decided to do, we decided to do all the ones that have a meningitis risk (if Karsen got meningitis it would be lethal for him). The ones we have done two rounds of: dtap with out the p (why no whooping cough? Because that vaccine has the highest seizure risk and also is the least effective vaccine). (Let me point out, I am no doctor but this is MY decision for MY child. No judgement here for what your schedule is for your child. Karter's vaccine schedule is completely different than Karsen's). The ones we plan on doing: HIB, PCV, and MMR. Rotavirus is not necessary since he is past the age of needing it. All the other we will be holding off until older.

We have our appointment set to meet with the cardiologist to see about his heart murmur. I'm confident that appointment will be a breeze and it won't be a problem for Karsen.

For now, wish us luck on this corn free, oat free journey (at least he doesn't have a gluten allergy) oh, and be praying we don't see any seizures today.

Couldn't leave you with out a picture of my sweet boys (playing in their sensory bins).

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