Developmental Delays

jsdneryOctober 2, 2008

Hi! I am a young mother of a 17 month old... I usually don't join posts but I couldn't help being concerned about some of u. My son, when he was about 3 months old, was not able to raise his neck and his arms appeared to be floppy. So my pedia-doctor suggested I take him to a pediatric neuro to assess him. The initial evaluation was that he has hypotonia- which means his muscle tone was very low and that we had to do several tests to find out what was causing this hypotonia.

I was in denial at first and refused to do the tests, sought for 2nd, 3rd, 4th and countless doctors' opinions until I gave in for the tests.

He had a brain MRI at first, found out he had a delayed myelenation(maturation) of the brain which is inconclusive because he's still very young and it's common. They asked us to do it again when he's 18months.

Then he had several blood exams and even special tests sent to other countries to check if he has some metabolic problems whatsoever. Some tests found something but still inconclusive, some were negative... but no Doctor could tell us what or why.

We even went to a geneticist which was very expensive and stressful cause they are hard to find. She couldn't diagnose him too.

His final test was to have an EMG where in they prick all his muscles with a gigantic needle which made him cry till he lost his voice and he threw up several times because of pain. This was to determine if his muscles were functioning or not. The test came out negative.

So we were stuck up with no diagnosis and we just felt helpless. My son showed no cognitive impairment, he was just delayed with his gross motor skills and appeared floppy. So no Doctor could help us.

At one point, I just looked at my son and realized that no one could help him but me, I just made a decision that if I believe and trust that he is okay, he will be okay. He was 3months old and God knows how much pain he has been through.

So I just decided to let all the tests and Doctors go, they can't help me anyway. I enrolled my son in a private occupational therapy session who visits him for 3 times a week and engages him in play therapy. Then I brought him to play gyms where he joined other babies his age and gave him a lot of stimulation. I even learned how to give therapy myself. I never look at him or treat him like there's a problem with him. Sometimes, I still worried, but I have faith in God and in my son.

After a few months of play therapy, he caught up with his gross motor delays. So I stopped the therapies, and I stopped worrying. I let my son enjoy his 1st year of life.

Now he's 17 months old and just started walking 4 weeks ago... he's just saying 3-4 words, he doesn't appear floppy anymore but walks everywhere and is very sweet, charming, responsive and witty! Those doctors said that he may not be able to walk, but look at him now!

So my advice to you moms, no one can better help your child than you! If you think, there is really something wrong with your child, then seek all the help you can get, but give him early intervention. Check out wee exercises dvd's, they're a great help. Stop worrying too much about what your child can't do but focus on what he/she can do... children are all different and there are acceptable ranges of delay for them. It may be that they lack stimulation and opportunities to reach those milestones. So rather than wasting time running after those doctors who are unwilling to help, spend time with your child and try to assess him on your own, address his delays with play therapy, it might be there was nothing wrong at all! He just didn't have much opportunity.

Besides, our moms never had those developmental checklist in their time. They just let us be! in our own pace!

Good luck! hope this could be of help!

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As the mother of a now 12-year old son with development delays - still, not correctly diagnosed, I think -- I'd say there's some good information in your post.

How vividly I remember the years of testing. And the years spent thinking that if only we knew exactly what it was we were dealing with,then we'd have the 'magic bullet' needed to 'fix' whatever was wrong. As the years went by, we accumulated label after label, diagnosis after diagnosis, some of which were helpful, some useless, some just plain wrong. We spent thousands of hours in therapy sessions -- speech, OT, vision, social skills -- and hundreds of thousands of dollars on tests, therapy and special schools. Yes, hundreds of thousands of dollars. And that's after the portion covered by insurance. And yet our son still struggles. Whatever it is that's 'wrong' with him is still there, and we all still deal with it every day.

The part of your post about loving your child exactly the way he is, and on celebrating the 'can do' moments -- I'd endorse that 100%.

The part about stopping all the testing at some point I'd agree with to some extent. Sometimes, there IS a 'magic bullet' that can really help, or a health problem that could be unmasked before it causes damage -- and stopping the testing too early causes harm. Sometimes though, we just don't have the technology to find it, or the child's young age makes the symptoms too vague to identify. Or maybe nobody has yet 'named' whatever group of issues this child has... We've stopped testing for now, but will probably try again in four years or when the 'next generation' of genetic tests is expected to be available.

The part about Moms knowing best -- I totally agree with that! Sometimes doctors dismiss our concerns and dismiss us as 'over-anxious'. Sure - We're anxious. But we also know our children better than anyone else. And when a mom can overcome her 'my child is perfect' bias to go to the doctor with "I think there's something wrong" -- Listen to that Mommy Gut.

Often when a child is so young, providing stimulation and opportunities, and just loving the child seems to be the best we can do. BUT - if your Mommy Gut says there's a 'real' problem, I'd also insist on professional help as well -- occupational therapy, physical therapy, speech therapy. Don't wait when you can intervene and help.

Yes, enjoy your child. Love your child. Appreciate the special perfection that is your child. But address the disabilities clear-headedly and with determination.

    Bookmark   October 14, 2008 at 1:39PM
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Well said Sweeby "address the disabilities clear-headedly and with determination"
I unfortunately can not stop the therapies or the worrying.(every mother worries) I am glad that you have experienced a great outcome at 17 months (jdsnery)

    Bookmark   October 14, 2008 at 2:21PM
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Hi Tegwyn --

What's up with your child? How old? Any diagnosis yet?

    Bookmark   October 15, 2008 at 12:36PM
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Hi Sweeby. The diagnosis is septo-optic dysplasia. She is 5 and an absolutely amazing kid. Send me an email.

    Bookmark   October 15, 2008 at 12:58PM
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SOD - Had to look that one up. I'll email you privately.

    Bookmark   October 15, 2008 at 6:55PM
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Hi everyone! It feels great to find moms who's been in the same situation. is terribly painful for us how we and our children dealt with those countless tests with vague diagnosis and almost no answers at all.

I agree that if there's still that gut feeling inside of us we should proceed with medical attention until we get the "missing piece". I was lucky enough that now, I feel at peace where my son is on his development. He's fairly on track now.

I think all our experiences as moms who has gone through these "painful" and "challenging" moments will always be a part of our lives. Hopefully, our posts here can help a lot of moms.

I wish for everyone to end up the way I did... to finally find that "peace of mind" that our babies are fine. Tegwyn and Sweeby, I wish u well and I hope you find that "magic bullet" soon!

Never fail to have faith in miracles.... even just the miracles of a "Mother's love!"

Kudos to us moms who never fail to strive for our children to have the best life they deserve!


    Bookmark   October 23, 2008 at 7:51AM
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