Developmental Clinic and Developmental Pedi

[Kathy2579]

We are one month away from what I have been waiting for, for ever 7 months.

I have John's binder with any and all info medical or testing already done. I have lists of things we notice. I even took a video of part of the things cause I am tired of being looked at as nuts.

What will they do? Anyone use a developmental Pedi?

How demanding can I get? I am sick of the "wait till 2" he is 7 week away form 2. I want to know what is going on.. and how to more forward... a DX now ...

[SpottedFoxx]

I see a developmental pediatrician for my son. Get as demanding as you need to be to get your son seen (with the understanding that there are waiting lists for most DP).

I know how frustrating it is. We keep hearing "wait till he's x age" on various issues. It's not that they are putting us off... it's just that they don't have the ability to diagnose certain issues until a child is a certain age. That doesn't mean you can't go on the assumption your child has "x" and can begin treatment in hopes of getting a jump start.

We suspect my son (who turns 5 next month) has central auditory processing disorder. They won't touch that till he's 7. However, I insisted he be in a classroom with a sound field system (raises the teacher's voice above the din of the classroom) because it has been shown to improve a child who has CAPD's attention.

We must be our children's advocate. No one else will do it for us. Trust your instincts Kathy. If you suspect something, I'd bet dollars to donuts you are right.

[Kathy2579]

We waited 7 months for this... I have one more month. I am not waiting. I am a special education teacher.. He has red flag all over the place. Gross Motor, speech, and Fine Motor. Then throw in eating issues.

I am thinking CP/Low Tone with Processing Disorder or Developmental dyspraxia.

I think if I hear one more time "wait till X" I may need someone to bail me out...
I mean if I have evidence and you can see things why wait?

[marge234]

Good luck with the developmental ped. I haven't seen one but just wanted to say I HEAR YOU and you're absolutely right. As is PP. There is NO REASON to wait. That's terrible advice, often (not always) given by people who aren't capable of recognizing potential problems in children under 3 in the first place.

We got the wait advice from 2 pediatricians, one of whom was supposedly an expert in development. (He wasn't, however, a "developmental ped"--I didn't know to look for that.) We went to the EI clinic at the local hospital anyway. They found gross motor delays and recommended PT. Unfortunately, they missed the rest of what was going on with my baby. After he graduated from PT and caught up on motor milestones I still wasn't satisfied. I finally saw someone (once I found her it was NOT a long wait to see her) who could see what was going on and believes in addressing issues while babies brains are still growing. She's a developmental psychologist.

She said that parents who have concerns are almost always right. Yes, some people look for trouble that isn't there but the vast majority aren't nuts. We may not know what it is (though given your background you probably do know what it could be), we're responding to "something" that turns out to be an issue.

We've gotten great help--referrals to OT and speech--and feel like we're on the right track with DS.

I hope you have good luck with this developmental ped.

If you aren't satisfied with the conversation, you might check this web site. Actually you might check it out anyway for therapists, if you end up needing them, regardless. These folks are trained in a model that encourages earliest possible intervention. It may be too soon for a formal dx but that doesn't mean you can't address the concerns. Dr. Stanley Greenspan, former NIH official and big 0 to 3 advocate, started this group.

http://www.icdl.com/

Hang in there. Your son is very lucky to have such a persistent mama.

[Kathy2579]

AHHH but the best part my EI stinks in the this area. I pulled him and my reg. pedi got me speech PT and OT at the local childrens hospital... thank you for the support...
I know I am on a mission but I know my son needs it.

[Lady Mayapple]

You are doing the right thing. I wish I would not have waited so long to make the same decisions you are making. I allowed people around me to say "He'll grow out of it, he's fine, some kids just take longer to blossom" and all the rest of that crap (however well-intentioned it was still crap to me...) I knew in my soul that something was not right, and now I live with constant fears of "What if we missed an opportunity? What would my son be like if I had taken him to be evaluated two years ago? what if he will never catch up because I was an idiot and waited to get help for him?" I applaud you for tuning out the background noise and doing whatever it takes to help your child. He is lucky to have such an attentive, strong Mama

[SpottedFoxx]

Originally Posted by Kathy2579

AHHH but the best part my EI stinks in the this area. I pulled him and my reg. pedi got me speech PT and OT at the local childrens hospital... thank you for the support...
I know I am on a mission but I know my son needs it.

Go Mama Go!!!

Our EI is the pits too but our pre-school and schools are fantastic. EI told me my son didn't have a speech problem - he was just too busy and if he'd sit still to learn, he'd start talking.

My son has a severe articulation disorder as well as dyspraxia of speech. We could have fought and gotten him speech but didn't know any better. Lesson learned - follow your guts!

[Kathy2579]

I have been kicking myself.. and playing the "What if" games.. Flags when up at 5months old when he got croop so bad he was in the hospital his O2 levels dropped 4 times below 45.. was on O2 for part of his stay... Everytime I say this is why.. I am shurgged off...
DH even asked while in the hospital is this going to have a high risk of brain damage.. they all said NO... I knew yes.. I just kept my mouth shut...
Every day with on DX is a day with out a path to a better life for my son.. and our family..

OK time for Coffee lol

[SpottedFoxx]

Oh Kathy - I'm right there with you. We brought our son home from Guatemala and 4 days later, he suffered a series of 5 grand mal seizures (last one, he stopped breathing). For years I was told that "seizures don't cause brain damage". My developmental pediatrician put "static encephalopathy" on his last report. I asked what it was and she said "brain damage, caused by the seizures, that is not progressing". Um, haven't I been saying that to all the so called specialists??

[Kathy2579]

Originally Posted by SpottedFoxx

Oh Kathy - I'm right there with you. We brought our son home from Guatemala and 4 days later, he suffered a series of 5 grand mal seizures (last one, he stopped breathing). For years I was told that "seizures don't cause brain damage". My developmental pediatrician put "static encephalopathy" on his last report. I asked what it was and she said "brain damage, caused by the seizures, that is not progressing". Um, haven't I been saying that to all the so called specialists??

Exactly... we may not have PHD's but we are MOM"S much more powerful and knowledgable

[khaoskat]

Originally Posted by Kathy2579

Exactly... we may not have PHD's but we are MOM"S much more powerful and knowledgable

Going to 2nd this, as I just went through major problems with one of the Ped's in the office not listening to me, and probably could have lost DS3 because of it.

After 3 days of spitting up and projectile vomiting, DS3 lost 1 lb of weight. This Ped had the nerve to blame his weight loss on a lack of milk supply...and not his projectile vomiting 98% of his feedings. I kept telling her it was not a supply issue....

2-3 days later we were finally listened to..he was down almost 2 lbs below his birth weight (he was 3 weeks old when this started and almost 4 when diagnosed). He had pyloric stenosis..and surgery the next day.

My instincts told me it was something more serious than supply issue...and I had to get mommy bear on them...