My son just turned 1 and has been diagnoised developmentaly delayed. I have known he was behind sinces he was 4 months old, but was told to wait till he was 6 month to see if he would catch up. At 6 months I was told to wiat till 9 months and once again I was told at 9 months to wait till he was 1 year to see where he is then. Well, I couldn't wait and around 10 months we took him to a friends mom who is an ocupational therapiest to help build a case to take to our Pediatrition. At that point the doctor sent him to get a PT evaluation and to a nurologist.

My son dosen't walk, crawl, barely can roll over,won't bare wait on his legs, and can not get into a sitting postion by himself. He will scoot around on his bottom and seems to have great fine motor skills and to cogntively be fine. He had a devlopmental test done by a PT and scored delayed in Gross motor skills and Lanuage. (He is like an 18 week old in his gross motor skills). She evaluated him haveing low tone in is lower body with spastic feet. He also seemed to have some low tone in his arms.

The Nurologist doen't seem to think anything is wrong with him and says he's what they call a "scooter". Where the therapists say they are at a lost?! One said is the most proplexing case she has ever come across.

This battle to get him help has been both exauhsting and confussing. We know there is a good chance he will catch up and be "normal" But we also know there is a chance he could have CP or some other disability.

Has any one else had similar experiences or does any one have any advice on our situation?

No doctor wants to be the forst to say your child has CP. I think you are doing the exact right thing by being aggressive and getting second opinions. We assumed from the start our son would have CP (and he does) and we still couldn't get doctors to write it down. He had been getting PT for over a year before a doctor would write "CP" as a diagnosis.

I would recommend you keep doing what you are doing--and start regular PT immediately. Regardless as to what the condition is, PT will only help.

Best of luck. Not knowing is a terrible thing.

I vaguely remember reading somewhere, that the combination of decreased gross motorics and normal fine motorics is *not* related to CP, but some other, more transitient condition. Anyway, you should get a second opinion. And getting PT is also a good thing.

When you say you finally had him evaluated by a PT, was this through Early Intervention, or whatever it's called in your state? There are free services available, including a professional evaluation, and they SHOULD be more helpful, if an official EI evaluation wasn't what was done already.

This may be useful: It's the best comprehensive checklist of developmental milestones I've found, including an indication of when follow-up evaluations are indicated:

http://www.metrokc.gov/health/kgc/redflags.pdf#search=%22%22red%20flags%22 %20%22new%20york%22%20developmental%20mi lestones%20underlined%22

I'm not at all sure why the neurologist seemed to brush you off so quickly. Was the neurologist a pediatric developmental neurologist? I think it's pretty common in cases like your son's to have a CT or MRI, or both. They can not "diagnose" CP, but they can look at areas of white matter loss in the brain, size of ventricles, evidence of early bleeding in the brain, etc.

I found this press release from the American Academy of Neurology: "The American Academy of Neurology and the Child Neurology Society are recommending early neuroimaging tests on children with suspected cerebral palsy as well as early screening for related disorders in new practice guidelines published in the March 23 [2004] issue of Neurology, the scientific journal of the American Academy of Neurology."

Also from the AAN: "Data from two class I , one class II and eight class III studies indicate that the yield of finding an abnormal MRI scan in a child with CP is very high (average of 89%) and greater than that reported using CT (77%)." (Which says, to me -- an admitted layman -- that an MRI can be indicated when CP is highly suspected.)

If you go to the website of the National Dissemination Center for Children with Disabilities (http://www.nichcy.org/), they have a state resource guide.

United Cerebral Palsy has one, too:
http://www.ucp.org/ucp_generaldoc.cfm/129/3/43/43-43/5807

The following is a guideline for physicians on diagnosing CP. The first section on determining whether or not a child is within the broad definition of normal development, and the final section, reasons to exclude CP, might be particularly useful:

http://www.medhomeportal.org/diag/diagnosis.cfm?diag_id=95&menu_id=20

If your pediatrician doesn't take your concerns seriously and take the time to adequately address them, explaining to you his or her reasons for thinking one way or another about your son's condition, change pediatricians. You probably want to have your son seeing a developmental pediatrician anyway, even for well child visits (all except for routine illnesses).

If you aren't finding the answers you want, take your son to visit some local CP centers, branch of UCP, etc. If you suspect CP, someone who works all the time with kids with CP should be able to look at your son, do some basic preliminary tests, and give you an idea of what they think, listing the reasons they think he may or may not have it, and explaining it to you in detail.

Continue researching, continue pushing. Don't give "being a pest" a second thought; first of all, I'm pretty sure you won't be even among the peskiest, and secondly, that's so much less important than you finding out how to help your son the best.

Our pediatrician is a very intelligent man that I (still) respect, however, he told me not to worry when DS still wasn't sitting well by 9m (also not crawling). At that point, I did get him evaluated (the diagnosis at that point was hypotonia, or low muscle tone). Looking back now at the lists of warning signs for hypotonia and/or CP (DS was dx'd with CP at 2y), DS had most of them. Far, far too many for ped not to have suspected that (which I don't think he did or he would have sent us for evaluation earlier, since I was pestering him). That's not to say that every child with any particular disability will have all the signs, just that in our case, my son did and the ped still didn't act on it.

Above all, I would just encourage you not to give up. You are your son's greatest advocate, and you know him better than your pediatrician does. Your pediatrician is an expert in childhood health, not developmental delays or disabilities, not cerebral palsy, and not your son.

Your son is very lucky to have you as a mother; you are obviously dedicated to finding out how you can help him in the best way. I also don't want to scare you; of course, the doctors could all be right, and they HAVE evaluated your son based on their knowledge of kids with disabilities and have concluded based on his symptoms that he is just a "late bloomer."

Good luck!

I'm searching for an article I once read that gave an excellent overview for physicians on early diagnosis of CP. Haven't found it yet, but the following article from the American Academy of Neurology is an analysis of existing research into diagnosing CP, and on page 12, they give a recommended flow chart for diagnosing suspected CP. The first step after physical examination, medical history, and checking for associated disorders is MRI.

http://www.neurology.org/cgi/reprint/62/6/851.pdf

Found a parents' version:

http://aan.com/professionals/practice/guidelines/guideline_summaries/Child_Cerebral_Pasly_Guideline_for_Patie nt.pdf