My 13 month old son, Connor, was diagnosed with having a developmental delay. When he was initally evaluated at 11 months, he had the gross motor range of a 7-8 month old. We were told at that time not to get him physical therapy. A few doctor's appointments later, our doctor reccommended physical therapy. He's only had two sessions, but our physical therapist suggested activities to help his weak core muscles. However, I try to do the excercises with Connor and he absolutly objects. Whenever he doesn't have his way, he'll arch his whole back and neck and hysterically cry. There was also the possible Failure To Thrive diagnosis thrown around since he also lost five pounds starting when he was three months old. Our first doctor never suspected Failure To Thrive. Our second opinion and current doctor said it was a possible explanation to the weight loss and gross motor delay. However, she told my husband and I that she has since ruled it out after adjusting his diet. Then she sent this program in my state that we go through called Help Me Grow (in case no one has heard of it, someone comes to your home free of charge to inform you of how your child should be developing and evaluate your child if a delay is suspected) a letter stating that Connor was definatly diagnosed with Failure To Thrive. The doctor said months ago that this was ruled out and she sent this fax to Help Me Grow in October! This just happened.

Basically, I have no idea where to go from here. I tried to talk to the doctor about this, but I had to make a specific appointment just for that, which is on the 16th of this month. I'm trying to get a second opinion, but our insurance just isn't working with us. Connor is in physical therapy now, but he just seems to be getting more behind as he gets older. I am so confused and worried about my son's health. I am trying to stay strong, but how can I when I'm convinced that it's all my fault? Could this be my fault? Has anyone here gone through any of this? Please reply. I need all the advice I can get.

Connor's Mom - you are on the right path and should definately try to not beat yourself up over this. I am a speech therapist and I work with kids your son's age and beyond. It is FANTASTIC that you are addressing his needs now and not in a year after poor habits have formed.

It sounds like you should definately continue with PT. If you have a good one, she will be able to strengthen your child's core muscles and eliminate negative reflexes that could be hindering his development. Keep pressing on with the exercises at home. Even at this age, children can learn how to manipulate mom and dad with behavioral reactions to things. Yes, it is uncomfortable for him. but, if you know in your heart that you are doing what is best for your child, you have to continue. Reassure him, but keep directing him firmly. Don't apologize for what you're doing. he can sense when you're tense- so just keep going with authority!

you may also want to find a speech therapist to assess his feeding skills. Chances are, if his core muscles are weak, oral motor muscles are weak as well. If muscles in the mouth don't work great, feeding becomes taxing and tiring - hence a failure to thrive-like condition.

Good luck. You're a great mom just looking out for her son.

Connor's mom - you're not alone. My son, also almost 13 months has gross motor delays. We're still trying to determine why. He also has epilepsy, so perhaps they are related conditions in his case. At any rate, we just entered a state funded program similar to what you have Connor in, and we're getting him into outpatient PT as well. Ayden responds similarly with the back arching all the time, although luckily, he doesn't cry. Our PT believes this is due to an oversensitivity in his back. We're trying deep muscle massage to lessen the stimulation he gets from everyday touch (people, chairs, etc.) You can do it pretty easily - start with arms and legs and move to the back with deep pressure. I let Ayden hold a vibrating back massager (any vibrating toy will work) to distract him during the massage. The PT said this works because vibration and deep massage go along the same neurological pathways and the vibration will overpower the touch. It seems to be working for us. We're also working on the oral muscles as Donna suggested - with sipping from an open cup and gum massage.

It's hard to watch your child be so different from peers his age, but stick with him. You are his advocate and if you feel another doctor would be better for him, make the switch. Also, look for other state funded programs that can help pay for this stuff. Connor's doctor or PT should be able to make some suggestions.

My son (now 5) was/is also delayed and given the "failure to thrive" diagnosis. He has done PT, OT, feeding therapy and speech. They have helped tremendously!!! He's been through a lot - and has a more official diagnosis now, and is coming along well. Keep going, address each issue as it comes and get more than one opinion if you can. My son has seen many specialists but in the end, it comes
down to a day by day thing. If you look at him you would never guess he has issues (other than being small) which can sometimes be confusing. Stop blaming yourself - that accomplishes nothing for anyone! How I wish we could talk privately, but as it is - hang in there!!! Do all you can and trust God.

We are all here for you!
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