Hypotonia and Dyspraxia

Re: Hypotonia and Dyspraxia

• macchiatto member

  September 2012

  One of my boys has hypotonia along with gross motor delays and some other issues, but he wasn't diagnosed until 2.5. I had raised concerns starting with the pedi starting when he was 9m but she felt like he was in the normal range; it was after he turned 2 that he really started getting behind with his milestones and I finally contacted EI. He's had PT once a week since then (along w/other therapies for other delays), plus PT 90 mins/month through the school system.
  

  fraternal twin boys born january 2009

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• FlgBride member

  September 2012

  We first noticed that something was off with our son around 9 months old too. G has very mild hypotonia. At 9 mos, we begged our ped for an EI evaluation. G didn't qualify. We started PT privately once a week at that time. He started failing gross motor milestones shortly after that. At 12 months, we pressed to be seen by neurology and genetics as we felt that something wasn't right. We had a dx of Fragile X syndrome at 18 months. Without the dx, G still wouldn't qualify in our state for EI, as his delays (while significant) are not great enough to qualify.

   Others on this board may have different experiences with this, but I was told if hypotonia is present, it will most likely always be some sort of issue.
  

   My point is not to tell you that there is or isn't something up with your kid, but to tell you that if you feel something is up, press your doctors. Your ped sees your kid for a relatively small amount of time and may not pick up on things that may be questionable.
  

  ETA: I also meant to say that DS was pretty slow to start solids....at 9 months it was just a bit or two of puree. He really got into 'real' food around 14 months old. He's a champ eater now and received no therapy for it.
  

   

  dx: Fragile X Syndrome

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• st.augbride member

  September 2012

  Ds has mild hypotonia. He was born high risk from having severe IUGR in utero, so we were pretty quick to jump into PT. We started EI once per week at 4 months old and ditched them for much better private services twice weekly at 6 months. We dropped to once per week at 17 months shortly after he started walking. He walks and runs everywhere now at 20 months old, but is still not the most balanced. It will be a while before he takes steps well or jumps or anything like that. The most important things to focus on are that you have good PT providers and that you see steady progress.

  

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• kcisthebombdotcom member

  September 2012

  My DD has mild hypotonia and we never did treatment. At nearly 20 months old, she walks, runs, climbs everything--she's fairly age appropriate on gross motor. Even though she got a late start, she seemed to catch up pretty quickly.  

  She may have verbal dyspraxia (apraxia) as my oldest has it, I had it as a child and it has a genetic component--she's still fairly nonverbal, but she currently has hearing problems so it's still too soon to say if it's hearing related or not.

  

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• haleybeth81

  September 2012

  Both of my DDs have hypotonia but not dyspraxia.  DD#1 is moderate to maybe a bit severe while DD#2 is very mild.  They've been tested for most of the most common causes and came up negative so they think it's just genetic and not to worry too much about it since it's only in the joints and muscles.  They are both in PT (DD#1 didn't start until 15mo due to having a terrible neuro that we eventually got rid of, and DD#2 started at 6 mo).  They do aquatherapy (we do it ourselves since we've had trouble finding someone who was reliable to do it in our area and I've had DD#1 in in aqua since she was 2), swim lessons, and private pt/EI.  From what I've been told from the Hopkins hypotonia clinic, the more aggressive you are with the PT at a young age the better they tend to do.  They also said that you should also let your child be a child ( I was doing way too much therapy and burning myself out which made the girls miserable) as well.  The thing that has made the biggest difference for us is the aquatherapy and you can put LO in swim lessons or just let them play in the pool if it's not available in your area.

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