I get emails sometimes from people with questions, so I thought I would put my answers here as a sort of informal FAQ:
One nice lady whose child has PDS wanted to know if Muggy was in private school and how he was developing, so I wrote her back:
Here’s what’s going on with the Muggster: He attends public school (2nd grade) and is delayed, but I wouldn’t say severely delayed. He reads at a 1st grade level. He counts to 200 with some prompting and a few mistakes – he is very weak in math, only simple addition and subtraction, and that with the aid of a number line. He talks a LOT now! But he was REALLY late at talking, and he still has speech clarity issues (partly because he just lost his two upper front teeth).
I hope you will be able to get help – all the help you can get, it will really make a difference – try to get first steps – they get the ball rolling on getting him talking, then get him in an early learning childhood pre-kindergarten program. Once he is in school get an IEP, where they will probably give him speech therapy and possibly PT and/or OT – fight for as many hours as you can get for him – we didn’t have to fight, we are so lucky we have such a supportive school, but I’ve heard stories of other schools where they don’t want to provide services 🙁 .
He had so many problems when he was a baby: fussiness, crying – I think he has digestive issues especially gassy and constipation.
Getting him to sleep used to be a nightmare, it would literally take hours to get him to go to sleep, he fought it so hard – we tried everything, but he is MUCH better now – I’d say around the age of 3 or 4 he started going to sleep easier, but he still requires one of us to lay down with him, and read a story and get his bears – it’s a nightly ritual that soothes him.
Also the Yahoo B6 kids group is awesome – they are going through this too and will help and are supportive – go join and introduce yourself 🙂
Here are some links:
These are are Missouri links – you would want to do a search for similar websites in your state 🙂
Well, I wish you and you child the best of luck, and feel free to write me anytime! Dave
(from the b6kids Yahoo group):
RE: Muggy’s vision and tracking objects:
Muggy didn’t track well with his eyes either when he was little – in fact there is concern he might be autistic, his pediatrician and neurologists say he exhibits symptoms seen in the autistic spectrum, but most of the people who determine these labels agree he is not classically autistic. His classification within the Autism Spectrum Disorder (ASD) is that he has Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS).
Update: It has been determined that Muggy needs glasses. He is nearsighted.
RE: A short history of Muggy’s progress and development:
Here are some of Muggy’s ages he started doing things (he is 8 years old now):
18 months old and he climbs everywhere but does not walk or talk yet.
21 months old: Muggy DOES walk now, and has been for a few weeks – he is all over the place! Still not talking yet, but he understands hundreds of words, and since there appears to be nothing wrong with his mouth or vocal cords we have hope that he’ll be talking up a storm in no time.
2 years, 10 months old: Muggy RUNS now – he is an amazing bundle of energy! Still not talking yet, but he is VERY close (we think he says some words like ma and pool and home, but he is not consistent enough to be sure). He knows hundreds of signs, and in fact his speech therapists think that may be why he doesn’t talk yet – he communicates so well with sign language he doesn’t NEED to talk!
So jump to the present, he is 8 and I was worried he wouldn’t talk…now I can’t get him to shut up LOL! He reads and writes (he’s quite a bit behind his classmates in 2nd grade, but about equal to the first graders)- math is a struggle, he just doesn’t get it. He has enormous difficulty staying focused. He tries really hard, and his teachers and friends really like him a lot, so that helps 🙂
I think what we are doing is taking a wait and see approach – he’s gonna do what he can do – we push him enough to show that school is important, but not so much that he starts not liking it.
Enlarged Ventricles:
A person from the b6kids Yahoo group posted that her daughter was diagnosed with enlarged ventricles, and asked if any other PDS children had this issue. She also mentioned a genetic condition called mega cisterna magna and it’s association with hydrocephalus. Here is my response:
Hi, my son Muggy (8 Y.O.) also has enlarged ventricles (they were vague about this, but I believe they said the location was between the skull and the frontal lobe). He was given a spinal tap to test for hydrocephalus also, and when the first test was inconclusive he was given another spinal tap at a later time, at which point they said he did not have hydrocephalus. We were verbally told that the enlarged space was due to “atrophy of the frontal lobe”, but I don’t believe that was ever written as a formal diagnosis. They did not mention Mega cisterna magna, but there is more info on wikipedia: http://en.wikipedia.org/wiki/Dandy-Walker_syndrome
I don’t know if any of that helps, but if you want to know more about Muggy you can go to https://b6kid.com
Good Luck!