Overall, he has been doing fine. He has been growing, but we have noticed that he is not so broad shouldered as other babies. He also has ezcema that often drives him crazy with itching.

One might think that these are very minor issues, but [...]]]> Here is another update on LMB, aka Alpha Cub!

Overall, he has been doing fine. He has been growing, but we have noticed that he is not so broad shouldered as other babies. He also has ezcema that often drives him crazy with itching.

One might think that these are very minor issues, but when he scratches thin bloody lines in his skin in multiple areas, M and I decided to try and do something about it. Especially since doctors seemed a little stumped by the whole thing and just keep on prescribing different medications, none of which have really helped him out for any length of time.

So we did our own investigations, and have decided that he may have some form of Celiac Disease. Yes, we are not doctors and attempting to diagnose issues is very scary for both of us. Still, since the solution has no real downsides except not helping him we saw no reason not to attempt the cure – a gluten free diet.

Oh, and the reason that we thought this might help instead of just accepting that he may have ezcema? Well, he also has a pot belly after eating, he still has some minor issues holding down his food, the aforementioned persistent rash/itching and he seems to not be thriving (but how is one to measure that?) All of these things are symptoms of Celiac Disease and it’s forms.

We will keep the diet going for a month and see if there are any changes. Most internet reports say that changes happen within the week, so a month is more than enough time to see a positive change in LMB.

I hope it works.

He is walking fine now, oh he stumbles here and there but he can walk just fine normally, he gets a good speed when he wants to and [...]]]> It’s hard to do an update, as there really isn’t a leave off point. So I will just start talking about how he is doing now.

He is walking fine now, oh he stumbles here and there but he can walk just fine normally, he gets a good speed when he wants to and loves walking decent distances. Nothing too long yet, but the summer hasn’t even started yet so I am looking forward to when we start walking around the block.

He is still a very skinny child, and he is still allergic to animal milk. However, we have found that he loves both meat and cheese ravioli. Yes, apparently the cheese making process somehow removes whatever it is in the milk that causes a reaction. We also discovered he is allergic to pediasure, so we are sticking with the Soy Milk with Omega-3 added. He also LOVES his aunt’s meat sauce on pasta. We tried to feed him the Gerber Graduates Meals, but he didn’t like them and the last one made him sick! I don’t like a puking Cub so those Graduates are in the donation bin! He eats a lot of homemade food now, and Gerber pureed fruit and grain cereals (oatmeal, rice and barley). When he gets a little bigger we will switch him over to adult fruit permanently. He used to eat blackberries and strawberries, but he stopped doing that. I hope we get him into the habit again.

As far as talking goes, he seems to pick up a new word every day while keeping the old ones! When he does something bad, like throwing something or biting or hitting … not that he is a bad boy, he just has spirit in him … after being punished he says that he is sorry, which of course brings hugs and acceptance.

I am soooooo looking forward to when he is fully potty trained!

I just started researching Hypotonia today. I don’t know why I waited so long. I have my suspicions.

The neurologist who diagnosed LMB (and me, I might add) with Hypotonia was [...]]]> I knew this for a while, like about 9 months. Yes, I mean I didn’t know I had Hypotonia until 9 months ago.

I just started researching Hypotonia today. I don’t know why I waited so long. I have my suspicions.

The neurologist who diagnosed LMB (and me, I might add) with Hypotonia was talking a lot about how we should just be tracking symptoms and not worrying about putting a label on them until we can find all the symptoms. He would then say things like ‘even if we can somehow label this as a syndrome or something else, all we can do is treat the symptoms, so don’t worry too much and just try and help him as best as you can.’ These were all scary red flags combined with a good explanation of Hypotonia symptoms and how to alleve them. Which seemed like he was both giving us a lot of information and also leaving a hell of a lot out.

Well, today I just discovered what he was leaving out. Or at least a major part of it.

Hypotonia, otherwise known as low muscle tone, is basically a condition where the body has mild problems controlling or conditioning the muscles. Motor skills delay is often observed, along with hypermobile or hyperflexible joints, drooling and speech difficulties, poor reflexes, decreased strength, decreased activity tolerance, rounded shoulder posture, with leaning onto supports, and poor attention and motivation. I have seen many of these symptoms in both LMB and myself.

Hypotonia is considered itself merely a symptom of something else wrong. If they cannot find out what that thing is, they call it Benign Congenial Hypotonia. Which apparently is another way of saying they think that there is an underlying problem but they don’t know what it is. There is also a nice long lists of things that could be wrong and Hypotonia would just be the symptom. Some would be obvious at birth and some might not be so obvious. Here is a partial list of possible things that Hypotonia might be a symptom of₁:

Congenital – i.e. disease you are born with (including genetic disorders presenting within 6 months)

• Genetic disorders are the most common cause
  • Down syndrome – most common
  • 3-Methylcrotonyl-CoA carboxylase deficiency ^[1]
  • Achondroplasia
  • Aicardi syndrome
  • Canavan disease
  • Centronuclear myopathy (including myotubular myopathy)
  • Central core disease
  • Familial dysautonomia (Riley-Day syndrome)
  • Griscelli syndrome Type 1 (Elejalde Syndrome)
  • Infantile spinal muscular atrophy such as Werdnig-Hoffman disease
  • Krabbe disease
  • Leigh’s disease
  • Marfan’s syndrome
  • Menkes syndrome
  • Methylmalonic acidemia
  • Myotonic dystrophy
  • Nonketotic hyperglycinemia (NKH) or Glycine encephalopathy (GCE)
  • Prader-Willi syndrome
  • Rett syndrome
  • Septo-optic dysplasia (de Morsier syndrome)
  • Tay-Sachs disease
  • Trisomy 13
  • 22q13 deletion syndrome
  • FG syndrome

• Developmental disability
  • Cerebellar ataxia (congenital)
  • Sensory integration dysfunction
  • Developmental dyspraxia
  • Hypothyroidism (congenital)
  • Hypotonic cerebral palsy
  • Teratogenesis from in utero exposure to Benzodiazepines

I have to admit that at first I was extremely worried. After all, what if my son was a ticking time bomb of potential syndrome manifestation! What if he has something seriously wrong with him and he is just too young for any doctor to diagnose properly, or maybe he is too young to manifest additional symptoms of the problem but he will later?

Then I started thinking again. He most likely has the same level of condition that I have. I am fairly sure that I do not have any additional problems beyond Hypotonia itself. So while I am not so foolish to completely write off the possibility that LMB might have other issues I am fairly certain that Hypotonia is the worst things are going to get.

What exactly does that mean to me now? Well, he is already up to crawling and cruising. He is starting to walk, but he is still not comfortable with it. He has gotten eating pretty much down pat, he can eat a whole blackberry! So we still need to try and work him on his speech and just watch him constantly on his motor skills. We also have to be sensitive to the reality that he will get tired much quicker than other kids when learning how to control different muscle sets.

I am fairly confident that in the long run he will turn out fine.

Now I also know why I often fell so damn tired when I thought I really didn’t do all that much some days…

1. Hypotonia, from Wikipedia, the free Encyclopedia!