what could this mean? High/low tone, poor eye contact and tracking?

[sesa70]

Unfortunately, I am not at all new to the world of special needs ;( I have an almost 12 yr old dd with very severe and profound needs.

Our newest family member, baby who is 3 months actual age and 2 months adjusted age (born premature) was just diagnosed with developmental delay. I thought her tone was off, and the p/t verified: High tone in her arms and legs and low tone in her head and trunk. Poor head control, very floppy when in sitting (almost scrunches completely up to her toes) and she doesn't track well or make much eye contact. Not to mention that she cries ALL THE TIME. She can smile, but mostly does not. She is a pretty miserable baby.

This really freaks me out, if I am being honest. I do not think I can do this again.

Tell me, is there anyway that she could still be ok or is this mostly all red flags pointing to something serious?

[PikkuMyy]

A three month old with that diagnosis? I haven't heard of that before. She can sit on her own at that age? I think it's pretty young to jump to any conclusions except that obviously she's in pain of some sort and she has tone issues.

[KCMichigan]

There is no way any Dr will give you a huge yes or no for the future at that age-- barring any major findings on a MRI or EEG.

I can tell what we have been through.

I have twin DDs- born preemie ( 8 weeks)

BOTH DD were in Early Intervention from age 6 mon on for tone/social/gross motor delays. BOTH had PT & OT. They are now 5.5.

DD1 had PT for high tone & OT for feeding delays.  'delayed' (even adjusted age) until 3.5 years for mostly feeding/gross motor. She had very bad reflux, digestive woes, was on predigested formula (Alumentium), slow to gain weight as an infant. She would scream and fuss due to reflux pain, even on meds. You would not guess it now-- with the exception she is very thin and is not potty trained at all due to  digestive system disorder. Academically, socially, speech, gross motor-- she has totally caught up and in some areas exceeded her age level. She does get pneumonia often and has mild asthma, but those are fairly minor health concerns. She is also incredibly intelligent and is off to Kindergarten in the fall on a 504 only for personal health care.

DD2 has had PT from EI for low tone, mild cp, and OT for some pretty severe sensory needs from birth to age 4.5. She made poor eye contact, over stimulated easily, had echolalia as an infant/toddler and had social & gross motor delays from 8 months until age 5. She actually had a PDD_ NOS dx at age 2.5 years-- only her high language skills kept it from getting  ASD  services(dx for the school system). She also had an IEP for 2 years for sensory, social, & gross motor needs. From age 3-5 : the changes were huge in her ability to tolerate sensory input and to build core strength to help with fatigue. Meeting her now-- you would only notice low eye contact if she is tired/over stimulated, she has quirks-- but is very smart, social, and loving.  At 5- she is doing stellar and will go into Kindergarten with no special supports. Her current PreK knew her history, but has hard time believing it based on the past year since she has done fantastic.

Given the gross motor delays and 'red flags' both girls had so early on and for so long, we never expected them to do as well as they have. We were given all sorts of 'potential outcomes' between their birth and age 2.  Now at 5.5 -- they are  like any other 5 yr old and although they do have a big medical files-- both are now fairly low maintenance medically and are just wonderful, independent, imaginative little people that will attend a regular classroom in public school.

** HUGS** it is hard to see delays so early and have red flags pop up. But you never never know what the future holds.

 I would talk to your Dr.  Could she have severe reflux, was she born with anything in her system (some meds to prevent prematurity can effect infant nervous systems), have they done MRI or other tests to rule out a physical neurological finding? Have you tried anything non- medical to help (think infant massage, chiropractic, swaddling, etc) Can you talk to an OT to see about sensory needs? (often preemies have sensory integration concerns when infants)? Have they checked her hearing/vision? I know we had both checked around that age due to DD2 having had eye problems related to prematurity (tracking, one eye wandered around), she does not have any eye concerns any more.

 FWIW : both my neighbor and my brother had * miserable* babies (though they did not have any major delays). They did not sleep, they did not smile much, they cried a lot, they had trouble finding a formula that worked.....both babies grew into delightful toddlers. For whatever reason- ages birth to 7 or 8 months were just miserable with colic/feeding/sleeping woes. One of those babies had a mild medical concern that may have contributed to it and also she was a floppy baby-- but gained tone once she got past 4 months.

[sesa70]

thank you for the replies. KC... it is very encouraging to hear about your children, thank you for sharing their stories.
What I meant by my dd was floppy when sitting was in a bouncy seat or a bumbo, not independently. Of course at 3 months she is far from that!