Parents of children with muscular issues..

[sarahsmom73]

Hi everyone,

I have been a member of the DIS for several years. I want to share my story with you in the hopes there is someone else who understands this.

My DD was born in April 2006 after a healthy pregnancy. I was induced at 38 weeks because the baby was almost 9lbs and I started to retain a ton of fluid.
Em was a very mellow and continues to be a very mellow child. She did not cry when she was born, but pinked up immediately.. At 7 days old she kept loosing weight and our Pediatrician sent her for an x ray to look at her heart which came back fine..

As each month went by I began to notice her motor skills were a little delayed. Our Ped referred her to Early Intervention to get at PT eval...in January. It was determined she had about a 6 month gross motor delay and we would begin both PT and OT...

When we went for her 1 year check up our Ped still did not like the progress even though we were seeing a change.. It was not enough in her eyes so she sent us to a children's hospital for a consult with a pediatric neurologist. She was concerned that we might be dealing with a rare form of muscular dystrophy with the odds being 1 in 50,000... I was devestated..

We went to the consult.. our neurologist did not think it was MD and gave us 3 options and sent us for testing..

Option one - Hypotonia - Low Muscle tone

Option 2 -Congenital Myopothy (usually caused by a double recessive gene)


Option 3 - Metabolic Myopathy - chances being 1 in 100,000 .. Serious and would require traveling to Boston...


The testing for the metabolic myopothy came back normal.. Phew..


Now we wait. Emma is 14 months old and is not crawling.. She is happy and talking up a storm.. Her movement is getting better. She can sit unassisted, and held the crawling position unassisted for 1 minute and 30 seconds this week.. This is huge for us...

Our neurologist said if she is not pulling to stand by 18 - 20 months we will have to go for muscle biopsy.. That really freaks me out.. It is also hard when people say is Emma walking? When I say no they say, "what is wrong with her?" It is hard enough to go through wondering if there is something seriously wrong with your child but when other people make remarks that are not intended to be upsetting do, it makes the waiting game that much harder..

Is there anyone out there going through something similar?


Thanks for reading my novel!

 

[mommasita]

Hi there.

My son was born with a club foot, and many issues revolving around that foot. They were sure he had spina bifida as well, and he gets 2 spinal taps a year until he turns 18, because it is always a possibility..He is 11 now..KNOCK KNOCK on wood.

He did not walk until almost 3 years of age, he never crawled, and as you can imagine everything else was very late. HE spoke a little, not a lot, but we understood each other. It is so hard, and harder to explain to people the why he isn't, and why a newborn had casts every week for 2 years, and braces...I learned not to bother with what others think..You have enough to contend with, they are not purposely being ignorent IMHO.

I know how hard this is for you, and will pray that everything turns out ok...

Now that my son is 11, we notice certain things. He has no balance, can not ride a bike, skateboard, or skate (hard in canada), but MANY things he can do, play football, baseball, etc..>So he makes up in that regard...He has some issues, but heck he is here, and he is fine...

I will say prayers for you, and please keep us updated.

 

[disneynewbeemom]

Our second son had similar issues to the first poster. He did not hold the crawling position until his first birthday at which time he only did for about 1 minute. He began crawling at 14 months and walked at 17 months. He had low muscle tone and began receiving OT and PT at about 14 months. I was convinced he had MD or CP. I was a nervous mom, as I am also a special education teacher. The OT and PT both mentioned that swimming is wonderful for low muscle tone. We went to the pool almost every day that summer. My son is now entering kindergarten and is fine. He's on the summer swim team also!! His gross motor skills are in the average range. Fine motor skills seem below average though. His handwriting is poor. He can write all of his letters, but the form is off. However, he hates fine motor tasks so he puts forth very little effort in this area anyway, so it is hard to determine whether it is a weakness or just not a preference. Hang in there. Keep working with her.

 

[sarahsmom73]

Thanks everyone! It is nice to have some support from people who understand.. I feel like every time we get over a hurdle and I start to relax a little something else pops up.. Thanks for the good thoughts and prayers! I'll keep you posted!

Mommasita ~ I live a little over an hour from you in Northern NY!

 

[KirstenB]

Our 21 mth old Zoe has hypotonia/low muscle tone. She was accepted into Early Intervention at 10 mths. She crawled right around 12 mths. She started walking at 19 mths. She also has some developmental delays, like speech, and social delays so she's getting Speech Therapy now. The only advice I can suggest is don't spend too much time googling these conditions. Sometimes you'll see "the worst case scenario", and in my case it just upset me.

I constantly remind myself to focus on what I can control. I can control how much we all work with Zoe. I can't control how slowly/quickly she progresses, so I try to focus on the moment, rather than peering too much into the future.

I enrolled her in Tumble Tots gymnastics. Yes it was beyond her abilities in some ways, but there were certain things she could do. I told the instructor of her delay, and the instructor was helpful.

Finally when someone who is an acquaintance asks about her, I just say she's delayed. If someone asks for further explanation then I can tell them more. I've actually met 2 moms whose sons had very similar symptoms to Zoe's. There's huge ***fort in that, and they have been very kind.

It's so hard to see our kids different in any way. Best wishes to you!!

 

[mommasita]

Thanks everyone! It is nice to have some support from people who understand.. I feel like every time we get over a hurdle and I start to relax a little something else pops up.. Thanks for the good thoughts and prayers! I'll keep you posted!

Mommasita ~ I live a little over an hour from you in Northern NY!

Howdy neighbour

 

[sylvita'smom]

Hi, I have a seven year old with congenital myopathy or limb girdle md (still not sure which) She has had it since birth. Never crawled, walked slowly, couldnt climb, run or jump. She is smart and funny. I'm looking for a chat room where I can talk to people in my situation. Normally I don't do chat rooms, in fact this is my first time. Is this the right place?

 

[Mackey Mouse]

Hi Sylivta's Mom, welcome to the Dis... this is a sub board of a huge message board that talks mainly about Disney stuff, but here we talk about coping with illnesses of loved one or ourselves, our children and you are indeed in the right place on this thread to do that. We are not a chat room per se as those are usually live chat rooms, or at least I thought so. We are not a board of just talking about congenital myopathy....we have other threads on this particular board that talk about other illnesses or just trying to cope with the loss of a loved one.. etc.

Please feel free to join in anywhere you would like now that you are member and by all means everyone continue your conversation here about your children, God Bless them all. I love these boards because we all reach out to each other..

Hugs all around..

 

[minkydog]

My son Christian doens't have myopathy,but he was so fragile as a baby and soooo delayed. I remember those panicky feelings well. It seemed like we'd never get any answers and he was being tested for everything. He was incredibly hypotonic--we had therapy 4 times a week, plus all that we did at home. I felt my life was out of control. For his first two years I felt like we were in a fight for his life.

Fast forward--we have a diagnosis, a rare syndrome. Christian is severely mentally handicapped, but with time & therapy he has learned to sit, stand, walk, run, swim, climb stairs, let the dog out, dump out the trash, destroy his bedroom, empty the drawers, clean out the fridge...gotta love Christian

I am not suggesting that your child is mentally handicapped. Not at all. I just want to encourage you that there are others out there who have gone through what you're going through. We know. It's an awful season in your life but you'll get through it. You will.