Re: Let's introduce ourselves.....

What a wonderful board. 's to all you strong, amazing mommies!!!


DS is 26mos and was diagnosed PDD-NOS back in July. He's been receiving speech, ABA, OT (for sensory issues) and PT (his foot angles in and he's clumsy).

We made the call because I noticed some strange sensory stuff and he wasn't really talking. In the past three months...he has had a word explosion and is basically a parrot. He knows and can identify isolated every letter of the alphabet and 1-20. His problem solving skills are through the roof. He can now follow directions and asks for things when he did NONE of this before. He still visually stims a bit but it's usually when he's bored. We're working on that. He's a great sleeper and eater. Although, he does gag a bit when I put various textures on the same bite. All his therapists feel like he will declassify by the time he's ready for school. EI has been amazing.


Steph...I'm glad you're finally getting some concrete answers. Anything you need...

Re: Let's introduce ourselves.....

I haven't been on LIF much lately and I'm so glad I looked around today- I just found this board

My name is Denise and my son Ethan has X-linked Hydrocephalus. It's a mutation on the L1CAM gene that includes him not being able to drain & regulate brain fluid. He's currently 19 months old, but was born at 36 weeks.

We found out when i was PG that he had severe hydrocephalus, but didn't know it was genetic until they did blood tests after he was born. We were told pre-delivery that with how severe the hydrocephalus was, he would most likely be a vegetable or severly mentally retarded. We were offered the option to terminate soon after (around 28 weeks). It was a difficult decision, but we decided we needed to give him a chance. Soon after he was born he had 2 different surgeries to put in a shunt (to regulate his brain fluid). After 9 rough weeks in the hospital (with many issues, rollercoaster rides and nearly losing our little boy) he came home. The doctors told us he will most likely never walk or talk.

Ethan has adducted thumbs, low tone, feeding issues, gastro issues, etc. EI began when he was around 2 months old. Now he's up to 8 appts a week, 2 with each therapist (PT, OT, Sp.Ed & feeding/speech). We are so amazed at all the progress he's made. He can now roll over to his stomach, pushes to sit with a little help, sits & plays pretty solidly when placed, can now put weight on his legs to stand with help, hands are a lot looser, can understand simple things we never thought he would, can say Ma ma, Ba ba, Na na, and just started with dada sounds, etc.

There's so much more, but you get the idea. We are so proud of our little boy and so far, as you can see, doctors don't know everything. Yes, Ethan is delayed, but the point is that he's improving everyday and will be the best Ethan he can be . If you have any questions, feel free to ask. We love all his current doctors & therapists and we're so grateful for EI!!

I'm so happy this board is here and I would love to chat & GTG with you lovely ladies

Re: Let's introduce ourselves.....

Posted by BMonster

I haven't been on LIF much lately and I'm so glad I looked around today- I just found this board

My name is Denise and my son Ethan has X-linked Hydrocephalus. It's a mutation on the L1CAM gene that includes him not being able to drain & regulate brain fluid. He's currently 19 months old, but was born at 36 weeks.

We found out when i was PG that he had severe hydrocephalus, but didn't know it was genetic until they did blood tests after he was born. We were told pre-delivery that with how severe the hydrocephalus was, he would most likely be a vegetable or severly mentally retarded. We were offered the option to terminate soon after (around 28 weeks). It was a difficult decision, but we decided we needed to give him a chance. Soon after he was born he had 2 different surgeries to put in a shunt (to regulate his brain fluid). After 9 rough weeks in the hospital (with many issues, rollercoaster rides and nearly losing our little boy) he came home. The doctors told us he will most likely never walk or talk.

Ethan has adducted thumbs, low tone, feeding issues, gastro issues, etc. EI began when he was around 2 months old. Now he's up to 8 appts a week, 2 with each therapist (PT, OT, Sp.Ed & feeding/speech). We are so amazed at all the progress he's made. He can now roll over to his stomach, pushes to sit with a little help, sits & plays pretty solidly when placed, can now put weight on his legs to stand with help, hands are a lot looser, can understand simple things we never thought he would, can say Ma ma, Ba ba, Na na, and just started with dada sounds, etc.

There's so much more, but you get the idea. We are so proud of our little boy and so far, as you can see, doctors don't know everything. Yes, Ethan is delayed, but the point is that he's improving everyday and will be the best Ethan he can be . If you have any questions, feel free to ask. We love all his current doctors & therapists and we're so grateful for EI!!

I'm so happy this board is here and I would love to chat & GTG with you lovely ladies

Re: Let's introduce ourselves.....

Welcome Denise!

Yeah Ethan..way to go!