DS diagnosed with Hyptonia (low muscle tone)

At about 12 months or so DS was diagnosed with Hypotonia via an early child development PT. It is a condition that renders the child to have low muscle tone. Initally, when this was told to us DH googled it and had DS with one foot in the grave saying that this would affect his ability to eat, walk, and even affect his heart (since that is a muscle too).

I have left the early childhood appointments to DH. I have been to a hand full over the last year or so. The one I was able to attend after the diagnoses I asked the PT if there are different severities of this condition? She said yes, of course. I explain DH's statement about the heart, and speech and so forth and she profusely apologized and went on to explain that DS has a very mild case of the condition and that he may have some limitations with sports like football but he will be fine.

We have not spoken of the condition until today when an Occuaptional Therapist evaluated DS. She stated that it is not really a muscle issue but a sensory issue describing behaviors like taking a long time to eat, running non-stop then becoming a pile of a child in front of the TV, drooling, and not being able to drink from a cup because he does not feel the sensation of the water entering his mouth unless it's in a gush. I can not deny that these things occur but DH has taken it to the next level now rendering unable to enter a mainstream learning enviroment and stating that he now has special needs that need to be addressed. Also stating that this condidtion will limit him cognitively in school and possibly he will be left behind if we don't intervene.

Here is why I am PO'd. I asked "what are we supposed to be doing?" He replied "I don't know, the OT is going to bring some handouts."

WHAT!!!!!!!! You have basically just told me that this women belives our son will be cognitively delayed and all we are getting are some freakin handouts?!?!?!?!?

I love my DH but I really think that this is like the last time and that there is nothing wrong with our son. He is carrying the baggage of his sickly childhood (e.g. horrible allergies until 12, 95 pounds until the 10 grade, 5'6)

I really want to tell him to lay off DS and believe he will be fine. I am by no means sticking my head in the sand on this but from what I have read...obviously not the same thing DH has read. This is something he will eventually out grow.

Oh, and the OT said he must have gotten this condition from someone in his family (me). DH goes on to say that with the reading issues I had in elementary school it's remarkable the obstacles I have overcome. First of all, my reading issues are a result of never being read to as a child and not having age appropriate books in my home for me to work on reading. It had NOTHING to do with Hypotonia!

I plan on calling the early childhood development program tomorrow and find out what this lady really said.

I think I will have to do that from now on. The debrief from these sessions do not go well.

Thank you if you read this whole thing...I feel a little better.

Lindia

 

I hope you get some answers soon.

One of my DDs was dx w/ hypotonia around 8 months.

Then it was upgraded to very mild CP around 16 months. She sat up late, crawled late, etc.... She is now 1 month away from her 4th birthday. She is a very talkative, bright, running girl. She does have some sensory issues-- but they seem to be related to prematurity instead of hypotonia (she was 2 months early). Her heart is fine, her cognitive level is great, her language is fantastic---gross motor and self care skills are delayed. She drooled until she was 3---we had a round of PT and 2 rounds of OT. She will be in a regular education preschool with OT/PT services through the schools.

1.Physical issues do not always = cognitive issues


2.Blaming someone is not helpful and/or is not usually the case for hypotonia. CP (it is often a result of birth trauma,lack of oxygen pre or post natally, prematurity, or development in utero) it is not inherited. Some medical Syndromes also cause hypotonia.

3. EArly Intervention is critical. Get all the help you can now--young children greatly benefit from PT/OT and early assistance. Many children get services and 'pass out' of eligibilty (had delays and catch 'up' though therapies or time). My other DD had a hypertonia dx from 8-14 mon and dx with CP from 14-28 mon. She no longer qualifies for CP diagnosis and has 'mixed muscle tone' dx but is totally ahead or on track for her age in all areas. She also drooled and had chewing troubles (feeding therapy) when she was younger. Both my girls had PT/OT and we saw gigantic strides in how well they did.

Talk to your husband about his fears, go to appointments together---he may be 'coping ' differently than you. It may be helpful to talk to someone else (therapist, E I coodinator, Pedi) about your concerns. Your Pedi should also be a great resource and can help you get more information.

 

Great advice from the pp! I can't really give you anything in addition to that....she said it well. I would just ditto what she said about maybe going to the appt's. if at all possible. I know that if my DH were to go to appt's without me, my questions would not be answered at all. I will also discuss it with your pedi, too.
:hug: Sorry you are going through this. I hope you get some answers soon!

 

My daughter was diagnosed with hypotonia at around 9mos when she developed plagio as a result of torticollis. That explained why she felt heavier than her sister, even though they weighed the same - she didn't "support" herself, so her sack-of-potato approach to life made her feel heavier.

Anyway, we've been followed by Infants & Toddlers and have done what we can to increase her gross and fine motor skills. Now, basically, except for a few physical quirks (such as more-than-normal flexibility and a slight shuffle to her walk), there is no discernable difference between her and a "normal" child. Her case was also mild, has had no bearing on other aspects of her development (cognitive, social, emotional), and she will be fine.

There are varying degrees of muscle tone. A mild case of hypotonia is certainly nothing to panic over.

 

Okay first off, hypotonia and sensory issues are different things, and a child can have one or both. They can go hand-in-hand in some instances, or they can also be mistaken for each other.

In the case of your son's drooling and inability to drink from a cup, there could be many reasons for those things. If you're concerned, I'd recommend an evaluation by an oral motor therapist.

I have one kiddo who has some hypotonia throughout his body. It delayed his walking, and he's still a little bit wobbly. He sees a physical therapist weekly.

He also drools, and some of that was attributed to low muscle tone in his cheeks and poor lip closure, but he also holds his tongue at the bottom of his mouth instead of the top of his mouth, which causes most of the drooling. He has weekly sessions with an oral motor therapist, and I'd say his drooling has improved about 90%.

Sensory issues are a little different, and you're right, they have nothing to do with poor muscle tone. We think Kevan has some mild sensory things going on, but nothing significant enough to address.

Some kids with these other issues also have cognitive problems, but not as a result of them -- usually there's some larger disorder or underlying problem. Kevan, for instance, has a duplication on his Y chromosome, and this genetic disorder could be causing all of this stuff (or perhaps not -- we really don't know). We're not sure yet if he has any cognitive difficulties. If so, they're not severe at this point, although he's clearly delayed in both receptive and expressive language.

Anyhow. The best thing you can do for your kiddo is NOT freak out, yet get him into as much therapy as you can. We do physical therapy, oral motor therapy, speech therapy, and some other experimental/alternative treatments. I'm also planning to get an occupation therapy eval soon -- Kev starts preschool tomorrow, and I'm going to speak to the teachers after they get a chance to observe him for awhile.

 

I think the PP's did a great job addressing your concerns. I haven't dealt with this, but I do know that whenever I feel uninformed, I need to first and foremost get informed about what is actually going on so I can determine the best course of action. At this age, there is a lot that can be done in terms of intervening on behalf of your child to really make a difference in his development. I hope that you get answers to your questions and concerns and that your DH and you can get on the same page soon! :hug: You have a lot on your plate to sort out! :youcandoit:

 

Thank you ladies for your comments. I feel comforted to know I am not alone. I do plan to be there when the OT comes the next time. I don't think I can take another synopsis from DH, I think I would end up choking him or something.

I love my kids so much and it's difficult when I feel that I can't control the outcome for them. I will do my best to make sure he gets all the help that he needs.

Thanks again,

Lindia

 

Have you had him to an othropedic doctor? They though that Jessy might have this but she had just enough muscle tone. The dr could prescribe therapy and possibly other options