Sunday, February 7, 2010

A Hodge Podge

This is just a compilation of some emails I have sent out the past month. Sorry it's kind of discombobulated. I really haven't had time or energy to sit and work on my blog. I'll try to get back in the swing of things soon. For those who don't know, I was also recently diagnosed with Lyme Disease. So, I've been battling that and all that comes with it. Emotionally and physically.

Well, Benjamin had a rough start, as some of you know. His pulmonary system is floppy and soft. So, that is likely what caused him to be hospitalized as a newborn. He was too busy working on breathing to eat. His blood sugar dropped and just couldn't get back up on it's own. That was his first week of life. At three weeks, he began having apnea episodes while crying. That was scary, but again due to the floppy airway. I was able to finally breastfeed him as his only source of nutrition when he was around 3 months. Now, though, I wish I had kept him on some formula. But he would throw up the formula, so I guess maybe it wouldn't have helped as much as I think it might have with his weight. He seemed to gain pretty well until May 09, when he was 7 months old. Since then he has maybe gained a pound and a half to two pounds. He also seems to gain a little and then lose it again. He refused solids until just about 2 months ago, when I was finally able to get him to begin eating some foods. But he only wants "real" home cooked food. He won't even touch baby food. Except for rice cereal which I mix with juice and a pat of butter. All along, I have wondered if Benjamin has had some kind of mal-absorption issues. His diapers just never looked normal to me. (And I have some experience to compare it to, which can be frustrating trying to explain to the doctors! They just say, yeah, yeah.) Anyway, Benjamin was still having some problems with turning blue, so the pulmonologist ordered an MRI, to find out why, and that came back showing some mild dilation of three of the four ventricles, which can be indicative of hydrocephalus. (He also has hypotonia, not sure why.) So, we got referred to the neurologist. He ordered blood and urine tests which showed the vitamin b12 deficiency and high levels of methyl-malonic acid. They have rerun the test three times. The first two tests both had the same results. But the third test was run after I added liquid b12 to Benjamin's diet. His third test shows that he is absorbing the B12 supplement. Yay! I thought maybe he was, because he used to cry nonstop, but the first day I gave him the b12 was the first time he ever laughed. And now he always has a little laughing fit within the first few hours of getting his b12 dose. Anyway, recently, ECI was out and they weighed him and I just got really sad and frustrated so I took Benjamin in to our pediatrician and said, "Please help us."  That is what finally got us the referral to the GI. Our appt was scheduled for mid-March, but I called my pedi again and asked him to get us a sooner appt. And he did. I am so thankful for that. We get to go in Monday at noon.  I don't know what to expect, but I do hope for some answers.
Rewind a bit:
At the neuro appt the doctor ordered blood work which indicated high methyl-malonic acid levels and low or non-existent B12 levels. They go together. If a person doesn't eat meat, they don't get B12. If they don't get it from food or absorb the B12 that they are getting, it raises their methyl-malonic acid levels. B12 prevents nerve damage by maintaining the fatty sheaths that protect the nerve endings. Before we started the baby on B12 supplements, he was screaming all day long, purposefully banging his forehead on the floor, arching his back, flailing and just generally a very discontent baby. (I even wrote in to momys before I knew of his B12 issue asking if anyone could advice me on how to have a happier baby.) Within three hours of his first dose of B12, he laughed for the very first time in his life. (Albeit a short, choppy, sort of forced, laugh.) But we could tell, he wanted to be happy. Within a week, he stopped banging his head on the floor. The screaming fits declined to a much more manageable frequency, more suitable for his age and maturity level. He is so much more pleasant to be around now. Also, before, the texture of his hair was very course and dry. It is beginning to soften and shine. 

My older son who has been dx as high functioning autistic is ten. He was pretty much non-verbal until 4 years 8 months when we took him off of gluten. Until that time, he had screaming, arching his back fits and had constant diarrhea from the time he had begun solids until the removal of gluten as well. (My new baby has had diarrhea since birth). Now that I think about it, when we took the older one off of wheat, we naturally began feeding him more meat. Which at the time probably raised his B12 levels. Anyway, within 6 weeks of this change (at that time) my son grew 1.5 inches and quit having diarrhea and began talking in full sentences, and quit screaming. After two years off of gluten we gradually added it back in to his diet. He now eats just like the rest of us. But I just got curious as to how he would respond to B12, so I gave him some. The day prior I had tried to hug him and got his typical, stiff as a board, standoffish arms to the ground hug. The next day, after giving him the B12, he casually crawled up next to me on the couch and leaned against me in the most relaxed manner I have ever seen him exhibit and he told me how much he loved me. This was very new behaviour for him. It's only been about a week, but he is a happier child and less bothersome to his siblings.

I use a liquid B12 that I got at Vitamin Shoppe. It has 1000 mcg in it and I give both children about half of that one time a day. It has some flavoring and neither one seems adverse to the flavor. (I do also give the baby a multi-vitamin and Vitamin D because he doesn't really absorb any nutrients from his foods yet.)

Developmentally, Benjamin is doing okay. About par for the course for one of my children. Corban was the only one who was exceptional and talked early. The others mostly didn't talk much until they were 2 or 3. But they have all caught up just fine with their peers. So, I'm not too worried about that. He just started walking this month, at 15 months. A little late for one of mine, but Elijah was actually later at 17 months. 

So, that's about it in a nutshell. We do a lot of praying these days. I do see the hand of God in the things that have been going on. For example, if I hadn't had a sonogram that showed a big head, my OB wouldn't have moved my due date up, and if I hadn't had a history of large babies, I wouldn't have been induced even earlier. And if I hadn't been induced the day that I was, Benjamin wouldn't have lived another week, much less another month in the womb. I am so thankful to have him here, problems and all. 


Amy said...

Wow! What an amazing read and what an amazing mother!!

~Tonia said...

All I can say is wow... I missed this some how.. And you are dealign with Lyme Disease??? I am so sorry... It does get better right?

Heather said...

I hope the Lyme gets better. So far, after 6 weeks of antibiotics, I'm not "healed" from it. I am researching natural remedies, which are a bit hard to find, but something has to help. I can't stay on antibiotics the rest of my life.

~Tonia said...

What about Vitamin C it helps your body fight off infections?? Just a thought. I know you can take up to 10,000mg a day to fight off things like Staph,colds and Urinary track infections. I have done that before! Along with anything else that builds the immunes system up.
I am praying for you!