From the time Yirmiyahu was eight months until he was fifteen months, his weight and head circumference hardly budged.  He wasn’t big to start with and I, the mother who has never paid any attention to growth charts, was getting increasingly concerned that his numbers just weren’t moving up.   The nutritionist and pediatric allergist said he wasn’t growing because I didn’t feed him enough, though after his caloric intake was counted up, the nutritionist admitted that he was getting plenty of calories.  When I asked his pediatrician about it, she told me not to worry: “Kids with Downs’ are all small.”

That irritated me even though it was supposed to be reassuring and I know it was well-intended, because if a baby who didn’t have T21 came into the doctor with the symptoms I was describing, believe me, they wouldn’t be telling the parent not to worry about it. They would have been running all kinds of tests to figure out what was wrong.  But for Yirmiyahu, it was acceptable for him to be small and weak because he has T21.

So the last two months have been very empowering.  At that time, after extensive research and a lot of anxiety, I decided to begin a protocol for cerebral folate deficiency (CFD) – this is treated by taking your child off of dairy and supplementing with high doses of folate.  I took him off dairy formula when he was eight months old, and started supplementing for CFD when he was 15 months old.  Currently he’s taking 5 mg of folate daily (a mix of folinic acid and 5MTHF, see the info at the site linked for an explanation of why we’re using both if you’re wondering); when he’s eighteen months this will be increasing.  Results?

Increase in head circumference – 2 weeks after starting the protocol, Yirmiyahu’s head circumference had increased to the -3% for infants his age, a huge jump from from a percentage that was very far down off the charts, suitable for a baby many months younger than him.  This was very important for me because if the head isn’t growing the growth of the brain is limited, too.  Two months into the protocol, his head circumference now measures 2% on the typical growth chart!  That might not sound impressive but it’s a huge leap and it means he’s finally in the range of age appropriate.

Weight increase – after 7 months of no weight gain, Yirmiyahu has gained 1.1 kg in the last two months.  Within two or three weeks after we began supplementing, people consistently started commenting on how much older and bigger he seemed and this has continued until now.  That was anecdotal, but after so many months of people telling me how petite and tiny he was, it was a noticeable change.

Energy – when he was younger, we all thought of Yirmiyahu as an active baby.  As he got older, he became more passive (but supposedly ‘babies with Downs’ are slower” so this worried no one but me and my older kids).  By the time we started supplementing, he was frequently laying his head on our shoulders to rest even at times it seemed he shouldn’t be tired; he wasn’t crawling much even though he had the physical ability.  It was worrisome when we contrasted what he had been like months before to how he was at 15 months.  Now?    He’s like the Energizer bunny – he just keeps going and going!  He’s crawling all over the house, cruising holding on to things, loves to bounce when held on a lap and is so energetic!   He still loves to snuggle into the person holding him, but it feels different – you can tell it’s because it feels cozy for him, not because he’s so tired that he needs to rest.  He’s sleeping much less and is much more awake when he’s awake.  This isn’t something you can track scientifically but it’s a relief and a joy for me to see his true personality being able to be expressed again, not being held back by nutritional deficiencies that supposedly didn’t exist.

Jaw structure – when Yirmiyahu’s bottom front teeth came in, they came in vertically rather than horizontally.  Over the last month, they’ve been getting straighter.  He was born with an extremely high palate, and his osteopath last week told me it’s coming down (ie expanding).  I asked her why she thinks this is, and she said perhaps it was due to specifically this supplementing.  (She hasn’t worked on his palate in the last couple of months so she didn’t think it was connected to craniosacral work she’s done with him.)  It makes sense to me that if his head circumference is increasing it might be affecting his jaw.

I’d like to get some follow-up bloodwork done so I can track his lab values.  I don’t anticipate continuing with therapeutic doses of folate long term; this is to address his serious deficiencies and as his numbers improve, I’ll be cutting down on this.  So I need to see the lab values so I can cut down appropriately.  I also am hoping I can get more thyroid bloodwork done (this is much more easily said than done!) to see how flooding his system with folate has affected these numbers – the hypothyroid symptoms I was concerned about have dramatically improved and I’m anticipating big improvements in his lab values.

I’m so grateful for the internet and the ability to do research and connect with others who are also looking for answers.  Without this it’s painful to think that Yirmiyahu would be suffering with unaddressed medical issues, and the doctors would continue telling me- and I would believe them! – it was because he has Down syndrome instead of addressing the real issues.

Avivah