Update on DD with motor delay

[Spoonful of Sugar]

Hi everyone,
I haven't posted for a while because there was nothing much to report, but I now have a little update, though it's not a good one. My DD2 has a motor skill delay but has not been tested for anything that may be causing the delay. Well, we've seen the pediatrician twice now: the first time they ordered a CPK test (testing for an enzyme that breaks down muscle, often elevated in people with muscular dystrophy), and told us that since she's been doing pretty well with the help of PT, they would probably end the testing there if it was negative and just call it a developmental delay.

Well, the test came back negative, but I guess they decided she's not doing so well anymore because they want to do more tests. She has to see a neurologist and have an ECG. I just found this out today and I'm freaking out. They still think it could be muscular dystrophy.

One thing that worries me is that I've had some trouble over the last four or five years with unexplained twitching and pain in my muscles. They did an ECG for me too, but didn't find anything. Now that my DD's having trouble, I'm worried that it's something genetic and we both have it. This is even scarier because I'm two months pregnant right now, and I don't want to pass whatever it is on to another child. I'm so worried! I feel like she's already been diagnosed with something terrible, even though I know it could still be nothing serious.

About my DD: she's 2 years old and has low muscle tone and is at about the level of a 15-month- to 18-month-old for motor skills, but at a 2.5 - 3 year old level for everything cognitive. She also has sensory processing issues and is seeing an opthamologist in a couple days for a possible wandering eye. She has a lot of trouble socially, and is terrified of babies and kids her own age (adults and older kids are feared or not on a case-by-case basis).

Anyway, thanks for reading. I'll keep updating as I find out more. If any of this sounds familiar to you, please post. I've been going out of my mind for about a year and a half trying to figure all this out.

 

[redshoes]

I wish I could say something that would make everything all better. I know what it's like to have wondered if it's the worst case and I know how your mind automatically jumps to that spot. I will say that in spite of all the struggles I have and have had with my DS (he's 6) there is no doubt in my mind that he is with us for a reason and we can learn as much from him as he can from us. I also have learned so much about myself in these last 6 years, I'm a whole lot stronger than I ever imagined I could be and that is one of the gifts that my DS has given me.
I hope that you can find comfort on your journey with your DD (who is darling by the way). Please keep me updated on your little one and congratulations about your baby on the way.

 

[Eeyore5]

I too wish I had something I could say to make this better. Are you going to a clinic with experience in MD? If not going through the MDA to find a clinic near you would might help in figuring out if this is the right diagnosis.

 

[Spoonful of Sugar]

Thank you, redshoes and Eeyore 5, for your posts. It always warms my heart to hear people say that their children are with them for a reason, no matter what difficulties they may have. Eeyore 5, I don't actually know yet what clinic I'm being referred to. I live in Canada, so as far as I know we don't have the option of choosing where we go with regards to specialists. It all has to come from referrals from the non-specialist doctors we are seeing. However, I will keep your advise in mind, because if I'm not able to get to the appropriate clinic here, I know that I can go to the States for medical care. I would have to pay, of course, but I know people who have done it and said it was well worth it, so it's always a possibility.

 

[bookwormde]

If you want to work on the social development portion here is a good program that can be parnet directed

http://www.icdl.com/dirFloortime/overview/index.shtml


It was developed mainly for kids on the Autism spectrum, but is works well with most younger kids who have social delays for varios reasons (with a little adaptation)

Also since play is often some of the best PT and OT at your childs age it can help there also

bookwormde

 

[Eeyore5]

Check out MDA Canada. They say they refer to clinics. They might be able to help you work around the bureaucracy.

http://www.muscle.ca/nc/anglais/national/services.html

 

[disneygourmet]

Hi everyone,

About my DD: she's 2 years old and has low muscle tone and is at about the level of a 15-month- to 18-month-old for motor skills, but at a 2.5 - 3 year old level for everything cognitive. She also has sensory processing issues and is seeing an opthamologist in a couple days for a possible wandering eye. She has a lot of trouble socially, and is terrified of babies and kids her own age (adults and older kids are feared or not on a case-by-case basis).

Has anyone mentioned limb or global dyspraxia to you? Does she see an OT for the sensory issues? Dyspraxia and sensory integration disorder (DSI) are separate disorders, but they often are seen together. I believe some OTs consider dyspraxia to be a part or type of DSI. I would recommend doing a search and see if the description looks familiar to you. Something that doesn't always happen, but would be a big red flag if it does, is if your child is inconsistent in her ability to do fine and/or gross motor tasks. I'm not talking about having the skill for a period of time and then losing it.

 

[Spoonful of Sugar]

Thanks so much for the great info bookwormde, Eeyore 5, and disneygourmet. I will check out both those links, and I will definitely do a search for dyspraxia; I've never heard of it.

 

[LMC]

My son has dyspraxia and sensory integration dysfunction. I don't really know from your description how delayed your dd is but I never considered my ds's too delayed until he was much older. He sat at 10 mo's, crawled at 10 mo's (but we literally had to teach him by moving limb by limb), walked at 16 mo's, ran at 3 years. He didn't climb or swing or do any of the things that typical children do because of the sensory issues; he did not get a dyspraxia diagnosis until he was 8 years old. The best thing you can do is ALOT of PT and OT for your child. The more you can do in the younger years the better progress you can make. My son is 15 years old now and is VERY delayed compared to his peers. He functions but clearly not on the same level. I worry about his life as an adult. I repeat, therapy, PT and OT if you can get it two or three times per week then take it.

 

[h518may]

A good book that talks about Sensory stuff, including dyspraxia is Sensational kids. This book puts several things under the same umbrella. Several things you mention about your daughter I think will be talked about in here.

 

[kirstenb1]

My son has dyspraxia and sensory integration dysfunction. I don't really know from your description how delayed your dd is but I never considered my ds's too delayed until he was much older. He sat at 10 mo's, crawled at 10 mo's (but we literally had to teach him by moving limb by limb), walked at 16 mo's, ran at 3 years. He didn't climb or swing or do any of the things that typical children do because of the sensory issues; he did not get a dyspraxia diagnosis until he was 8 years old. The best thing you can do is ALOT of PT and OT for your child. The more you can do in the younger years the better progress you can make. My son is 15 years old now and is VERY delayed compared to his peers. He functions but clearly not on the same level. I worry about his life as an adult. I repeat, therapy, PT and OT if you can get it two or three times per week then take it.

I second this advice. Our dd is 5, and in special ed preschool. The P/T and O/T services she receives at school are not enough. She goes to private P/T and O/T once a week. We'd do more if we could afford it. She's only been going since July, and she's already a more happy and relaxed child. There's still a lot of work ahead...I'm guessing this will take many years, but it will be worth it.

 

[Spoonful of Sugar]

So I've been reading up on dyspraxia, and I don't know what to think. Some of the early symptoms sound so much like DD I thought for sure that was the answer. But 2 symptoms that I keep running into are the exact oposite of her: language delay and difficulty concentrating. She is extremely advanced in language and speaks in complete, complex sentences. And she has an amazing attention span, able to focus endlessly on one task; sometimes she reads for 2 hours straight. I just don't know if it could be dyspraxia But we see the neurologist on Oct. 19, and I'll definitely bring it up if he doesn't.

 

[disneygourmet]

But 2 symptoms that I keep running into are the exact oposite of her: language delay and difficulty concentrating. She is extremely advanced in language and speaks in complete, complex sentences. And she has an amazing attention span, able to focus endlessly on one task; sometimes she reads for 2 hours straight.

Not all children with limb dyspraxia have language delay or attention issues. Also there are children with severe verbal dyspraxia (more commonly referred to as childhood apraxia of speech, now) who do not have the other issues.

 

[KPeveler]

Have you looked into Ehlers Danlos Syndrome at all (Hypermobility type)? In some children it can cause motor delays, muscle weakness, eye problems, and a whole host of other things. It rarely gets diagnosed in young children because little kids are so "bendy" it does not get noticed.

EDS often goes with sensory integration problems or Aspergers or problems on the autism spectrum, so it could be a combination of things.

An ophthalmologist should notice a problem with the color of her sclerae (the whites of her eyes) - under a light they may look blue or grey. This can indicate a connective tissue disorder like EDS.

 

[almcg]

My daughter has Dyspraxia and when she was little her speech was very advanced. It's only now that the learning difficulty aspect is really coming through as well as the physical problems. She has physio and that has helped a lot and we often see the OT. She also has Hypermobility Syndrome but my sister has been diagnosed with Ehlers Danlos Syndrome so we are going to investigate if my daughter has that. Keep fighting ,and sometimes it really does feel like fighting, for any information and diagnoses for your little one.

 

[KPeveler]

My daughter has Dyspraxia and when she was little her speech was very advanced. It's only now that the learning difficulty aspect is really coming through as well as the physical problems. She has physio and that has helped a lot and we often see the OT. She also has Hypermobility Syndrome but my sister has been diagnosed with Ehlers Danlos Syndrome so we are going to investigate if my daughter has that. Keep fighting ,and sometimes it really does feel like fighting, for any information and diagnoses for your little one.

In the UK, most doctors are treating HMS and EDS as two separate things. In the US, a lot of the leading doctors do not diagnose HMS anymore - basically if you are that hypermobile, you have EDS. It is an interesting debate.

 

[almcg]

It certainly is an interesting debate. Considering one Doctor told us that our daughter couldn't be in pain as "hypermobility doesn't cause pain" My daughter was diagnosed with Dyspraxia at the age of 7 but, looking back, she barely crawled and didn't walk until she was 18 months old. At the time I knew something wasn't right but investigations didn't start until she was 6 and it became more obvious to her teacher that she had difficulties. She was first diagnosed with ADD and we knew that was wrong. So we kept going with her until she got her Dyspraxia diagnoses and I must admit I cried when we were told what it was. Partly out of relief that we could get the help for her and partly because I knew the future would be difficult for her. But we love our kids and we will do anything for them and get the help they need.