Preemie Development

If in NYC, I would go to Sandy Jamrog's developmental movement class for babies. Do a private with her if you have the $$. CranioSacral therapy may also help. Sandy's # is ###-###-####, and the next class is 3/31 at 2pm. Good luck.

E.

Hi M.,
As an Occupational therapy assistant, working 10 years in Early Intervention, I feel there are several things you can do for your son, your family, and your sanity.

1. Find out if there are parent support groups.

2. Educate yourself on your son's diagnosis/conditions. You can google it, putting "pediatric" in front of it.

3. Learn your son's rights and get a list of all the services offered in your area (ie; OT, PT, Speech, Vision, teacher, ect). He should have a service coordinator or case manager, whatever the term is in your area. That person should be able to point you in a direction.

The more you understand, I think the less stressed you'll feel. Try not to let yourself become overwhelmed. Accept help when you could use it and rest when you can. (Do you have family in the area?)
Don't be affraid to ask lots of questions and advocate for your son. The earlier you get started, the better for your son. Good luck to you and your famiy.

M.,
I fostered a little preemie girl a couple of years ago and she developed these same symptoms. The pediatric specialists wondered if maybe at a later date she would be diagnosed with mild cerebral palsy? Other than her stiffness she was very healthy. She did require glasses at a year and a half. She moved on to an adoptive home and I keep in touch. She is doing wonderfully. I hope this helps.
B. b.

My son was only three weeks early, and aside from some jaundice was (thanks goodness!) very healthy. I noticed around 12 weeks that he often has his head tilted and turned to the left, and over the next few weeks, thought he had some other delays. I reached out to early intervention for an evaluation, and he qualified for services - PT one day a week - to help him with his gross motor skills (he had at least a 30% delay in gross motor development). We started the process when he was about 6 months old.

My husband was a little resistant at first - I think it can FEEL a little like someone is telling you that your child isn't absolutely perfect - but I just looked at it as a resource that could benefit him that I was unable to provide.

When he got re-evaluated in December (10.5 months) he was in the 10th percentile. That stung, because he had been making great progress and then stagnanted for a while (but he was making developments in fine motor skills, language development, etc.). As luck would have it, three days after we had the meeting telling me he qualified for PT two days a week, he started doing three new skills that we had been waiting and waiting for.

Part of is he is a big guy, part of it he is a cautious baby, part was he needed some help in learning to use certain muscles or use them differently, and part of it is that babies just develop on their own time.

Yesterday, my son, now 13.5 months old, walked clear across his bedroom all by himself. He is not totally done with PT just yet - he still favors one side over the other when doing certain tasks, still stands with his feet wide apart, doesn't like to engage his tummy muscles, etc. - but he has made TREMENDOUS progress and is right on target with so many things.

The reality is that being a mom doesn't automatically qualify you to be an expert on absolutely everything, especially if you think your child might have a special need. Just know that you are doing the best thing possible by reaching out to get help for your son - he's lucky to have a mom that cares enough and isn't too proud to reach out for help! And just because he might need a little help now, doesn't automatically mean that will always be the case.

FYI - Early Intervention services through the county are free if your child qualifies. They will take your insurance information and bill your insurance, but if your insurance company doesn't pay, you aren't financially responsible. If they do pay, these services don't count towards any deductibles, either (annual or lifetime). Also, the therapist sets up a regular appointment to come to your house on a day/time that is convenient for you, so there isn't a burden to have to take your son somewhere.

Good luck!

Hello M.,

The one thing I would recommend is to make sure he is getting his vaccines later, at the adjusted age as if he went full term. Also, when it is time to get them, use the single dose vaccine's which do not contain preservatives.

[I've been doing a bit of research on vaccines as my little guy is due for his next round on Friday]

Blessings to you and yours,
K.

my son was 2 pounds 12 oz at 38 weeks gestation. In the neonatal unit for 2 and a half months. His twin sister "normal" at 5 pounds 12 oz (the were undiagnosed twins) I still am in shock after 25 years.

Pay attention to nutrition. Read to him a lot even now. Massage therapy. I massaged my son fom infancy till he was about 6. He faced similar issues. Watch for learning disabilities. My son has mild cerebral palsy. We did early intervention as well. He had a lot of spacicity and ADD. Had PT OT and speech therapy through out is days in school. His placenta was detached and calcified. Watch immunizations. He hat DT instead of DPT as the P part gave him seizures. My son had an eye patch for a while when he was about 8 which seemed to dorrect the muscle weakness. You are your childs best advocate.

I'm a Mom of 28 weeker born at 2 lbs 15 oz. We also went through similar concerns and have been using early intervention for a couple of months now - beware it takes a long time for the services to actually start. Ironically, my sons neurologist does not even believe he needs it anymore. When my son was 10 - 11 months old (7-8 months adjusted) he was not even able to sit up on his own and was not doing to much - now he is 16 months and is doing everything he should be doing (with very little help from early intervention) and is pretty much caught up to a normal 16 month old. He just took his first step this past weekend and has been crawling around everywhere and getting into everything for months now. Definitely get the early intervention it is very helpful and they will work with the muscle stiffness that is a concern but honestly also give it some time because as they get older the development may just happen naturally. Just as we were getting nervous our son just took off on his own.

In regards to his eyes - definitely see a specialist. Our son also had some problems (ROP) but fortunately outgrew these - there are great doctors out there to handle eye problems early on before they get worse.

Hi M., My 2 1/2 year old son Matthew who was an identical twin (his brother james is in heaven) was born at 24 weeks weighing 1 lb. 15 oz. His stay in the Nicu lasted 3 months and he remained on oxygen till he was 4 1/2 months old. Matthew has had laser eye surgery for ROP and recentley had tubes placed in his ears. Matthew is still receiving physical therapy and speech thereapy and is actualy being evaluated today by a pshycologist to see if he can get a teacher or OT services. Matthew started walking when he was around 15 months and now talks almost clearly. Definitely get any and all services you can, they really help so when your son goes to school he is not behind. I worried alot about how far behind my son would be at first. But you know what they are little miracles and just enjoy one day at atime with them. When they are ready to walk, and talk they will do and then never stop! Keep positive and e-mail me with any questions you may have. I feel as though I have been through it all and am sronger then ever!

hi M.,
I'm a mother of a premee as well. she was born when I was 7 months pregnant. she has never has any big problem connected to her prematurity. she started to walk at 19 months..so a bit later compared to the majority..anyway I used to go to physioterapist specialized in premature babies. that helped a lot because at least to know how I could help in her motoric development.

I have a 2 year old who was born at 32 weeks 2lbs 9oz. I noticed a few months ago that her eyes were drofting out. This is more common in Preemies. We went to a pediatric opthomologist, patched her eyes for a few months, and a couple of weeks ago she had surgery. Her eye is much better now. I would see an opthomologist if I were you. I went to Dr. Marc Steele at 42 W. 72nd Street. Best of luck.
Mother of 3 - 14 year old boy, 12.5 year old girl and 2 year old girl

My daughter (a twin) was born at 34 and a half weeks, weighing 5 lbs, 3 oz. In utero she had a cranial infarction which affected her left side.

We were recommended for early intervention for physical & occupational therapy. We were also told that there could be cognitive implications.

At first I had a hard time accepting that there was anything "wrong". I cired alot. And prayed that she would just wake up "fixed". But as time passed, it was clear that she was not developing as her sister was.

She started her therapies at 6 months (she is 19 mths now)and the progress has been AMAZING! She never did crawl as most babies do, but she is now pulling herself up to standing and she is above average cognitively. She is SO motivated to work and the therapists are impressed. Our hope is that she will have full use of her arm and be able to walk. Every day it seems she is getting stronger and we are getting closer to our goal.

Even though I still have a difficult time "explaining" why my identical twins are so different I am happy that she is getting the help she needs to improve her life and I know I did the right thing for her.

Good luck with your son, and know that if you need to ask any other questions, you can contact me.

M. - I will first say how truly blessed you are. I too am a mother of preemies - my son, now four was born at 23 weeks and weighed 1 lb. 11 oz's and my daughter was born at 24 weeks and weighed 1 lb. 8 oz. We sadly also are the parents of a beautiful angel whom we named Angel who died shortly after he was born (our daughters twin). This is the time when you will begin to notice some of the problems/challenges that you heard about preemies possibly encountering when your son was in the hospital. Although we pray to not experience any of them - you have to prepare yourself for some. Muscle tone is something my son struggles with. His issue however is poor muscle tone (weak).He runs with a noticable wobble, has a tough time holding an open cup steadily to avoid minor spills and has a hard time jumping to clear even two inches off the ground. He is in therapy once a month for helping to build his strength and they provide exercises that we can work with at home easily - no fancy equipment needed. What I can tell you though is that these are obstacles that therapy can help overcome. You are doing the right thing by getting him evaluated now as early intervention is critical with these miracle babies. On a truly positive note, and something to keep you positive, that despite my childrens prematurity and the odds that were given to each of them - they are both thriving children with amazing intelligence and love of life. Challenges will present themselves but always remember where he came from-and that he is a true fighter and that you love him for the special person he is. Take one day at a time and don't ever be afraid to ask for evaluations!! Great job mommy!

Hi M.
My son was born @ 29 weeks ( sept 5 2007) He is also doing well thank goodness and was 2 lbs when he was born.
My question to you is.. do you have him enrolled in Early intervention? My son, b/c he was born at 2 lbs automatically gets services ( for Free) right now he is recieving Physical Therapy ( because of his tightness) and feeding/speech) both therapists say he is doing SO well that they wont be here for long, which makes me very happy but, ill take all the help he can get to get him caught up. Also, our neonatologist also gives me pointers when we see him ( every three months until he is 2) on how to work his muscles and loosen them up. There are alotof things you can do at home to help him and " move him" along but if you are not enrolled in EIm id suggest calling to find out how you can get it. Its wonderful!
D.

Good Morning!
My daughter is now 15 yrs old. She was 26 weeks, 2 lb 1 oz. As the other moms report, my baby had initial eye muscle issues and saw local(NJ) eye doc and we did vision exercises and with that the problem self corrected. My son(non preemie) was the one who needed some corrective eye surgery and we found yet a second eye in NJ who is a great surgeon. The referrals both came from the post preemie follow up program at MMH in Morris county!

My daughter(the preemie) did have some hip weakness, referred to rehab for abouts 7-9 months--so long ago and ran track at the age of 9 winning the 100 meter on occasion! With this rehab as well, the suggested exercises just worked into play time and really she eventually caught up!

Have fun with your wonderful little boy!

I'm a nurse and have done some work with preemies. Early Intervention will be very helpful to you and your son, and I would urge you to take advantage of it. His stiffness may be a transient condition that can be remedied with therapies--both physical therapy and occupational therapy can be helpful--the p.t. for large muscle development and the o.t. for fine motor skills.

M., my son was full term, however due to open heart surgery at 3 days old he needed physical therapy at around 8 months. His muscles just weren't developed enough. His pediatrician told us to go through the state (if was NYS for us at the time) to get the info. The evaluaters came to our home and did their tests. He did qualify. He had phyical therapy two times a week for the first month and then weekly for the remainder (which was another 10 weeks). After much improvement he was done. He was walking at 13 mths. No other problems since. Our 2nd son, I noticed at about a year old was crossing his eye. I took him to a pediatric opthamologist and was originally told that he was extremely farsighted. Waited 3 mths to see if it would strengthen on its own. It did not. At 1 1/2 yrs he wears glasses. What a remarkable difference. Granted your child is young and the circumstances are different. Have hope and do not stress. Just do what has to be done for the sake of your child and it will turn out fine. Seek the help from the drs and early intervention. Email me if you want to chat. Good luck!

Dr. Steel is the BEST!!!