My daughter is 6 1/2 months old and she has lobar holopresencephaly and microphaley which means part of her brain is fused together and her head is small. The neuologist said she might be mentally challenged. She cant sit up on her own and when she sits supports she scoots herself down or falls to the side. Her legs and arms are really strong she has more of an interest in standing when i help her stand she even trys to walk to me when i hold her up. Will she be ok?
Shes now also be diagnoised with plagiophaly and hyertonia and possible has cebral palsy
Call Franklin County Department of Developmental Disabilities, and get her an evaluation from help me grow, which is the Early Intervention Program in Ohio. She should qualify for services, if only for them,to follow her. If you do find that she has issues, contact the Childhood League, it is across the street from Children's, they have excellent programs.
M.
She sounds pretty good to me. I know it is so frustrating when the doctors can't give you an answer and just tell you to wait and see...but keep stimulating her all that you can.
Also, I bet with her diagnosis you should be able to get her extra help/therapy. You may have to demand it and/or fight for it though. Call the intermediate Unit in your county and ask them for an evaluation.
Also, I saw her picture on your profile page and she is beautiful! You are both so lucky to have one another! God Bless!!
First, she sounds like she is doing great. Second, for sure get her evaluated by Early Intervention.....these therapist know what to watch for and will help YOU and your baby. Even if everything is fine, anybody can benefit from therapy.
Unfortunatley (and I know you have been told this before) this is kinda the thing that you have to wait and see about. Being a mom.....that is the HARDEST thing to hear becuase you just WORRY. My son has a few delvelopemental delays, and the dr's always told me that we would have to wait and see what happens. So, basicly, I just had to wait and see if his delays were due to bigger issues (autism, etc) or if he would learn to overcome them. IT WAS TORUTURE to wait!!! I did all I could to help my son and teach him. I needed to feel like I was doing SOMETHING!!! And......now, he is FINE! He is advanced in many areas, and I am SHOCKED at how far he has come in such a short period of time. So, my advice is take the time and energy that you are spending worrying, reading on the internet, etc.......and interact with your baby, read to her, sing to her, do patty cake type things, play with her, bring her around other babies, encourage crawling/walking/standing, etc. Focus on that instead!!!
BTW.....My friend had a microcephaly baby, and her daughter is beautiful, bright little girl.
Turn your worry into action....best wishes to you and your daughter.
You can look it up on Wikipedia there is a bit from Wikipedia below. You can also go on the Mayo Clinic Site and look up everything you want to know.
She may have full brain function or limited you have to get her assessed by a physician who specializes in cases like hers.
Symptoms of holoprosencephaly range from mild (no facial/organ defects, anosmia, or only a single central incisor) to moderate (cleft lip or cleft palate) to severe (synophthalmia proboscis or cyclopia).
There are four classifications of holoprosencephaly.
Gross pathology specimen from a case of alobar holoprosencephaly.
Alobar holoprosencephaly, the most serious form, in which the brain fails to separate, is usually associated with severe facial anomalies.
Semilobar holoprosencephaly, in which the brain's hemispheres have a slight tendency to separate, is an intermediate form of the disease.
Lobar holoprosencephaly, in which there is considerable evidence of separate brain hemispheres, is the least severe form. In some cases of lobar holoprosencephaly, the patient's brain may be nearly normal.
Syntelencephaly, or middle interhemispheric variant of holoprosencephaly (MIHV), in which the posterior frontal lobe and the parietal lobe are not properly separated, but the rostrobasal forebrain properly separates; it is possible that this is not a variant of HPE at all, but is currently classified as such[2]
She'll be great. I have a child with special needs and he does awesome. As hes getting older, hes making a ton of progress. I would talk to her doctor and see about getting some tests done through your childrens hospital and if theres any programs that are available. Cincinnati has Help Me Grow and Early Intervention. I had Early Intervention but it was short lived because of something. They did help with transitioning to school and they did come to my house for therapy. In cincinnati we also have a program called CITE Services. I'm not sure if theres anything in Columbus like that.
Cherish her milestones and those wonderful things she does to make you smile. I'm sure she is an extremely smart little girl. It sounds like shes making good progress to me.
Is she involved with any early intervention? I would recommend that so that she can continue to make good progress. The folks that work with her can ensure that she's making her milestones. Good luck!
I agree with the first answer, have her evaluated by the Early Intervention Program in your state. In Indiana our program is First Steps and it is a wonderful way to get early therapy for children with special needs. Our program, which I assume is similar to Ohio's, is extremely affordable and the evaluation cost nothing. My twin sons were born 3 months early due to Twin-to-Twin Transfusion Syndrome and one of them has a significant brain injury as a result. Both boys were evaluated twice for free and now one of them receives three therapies which only costs us $9 a month (depending on income it could be free). The therapists come to our house since he stays home with a babysitter but would also go to his place of child care if he went outside of the home. Although what you describe does not sound alarming, it wouldn't hurt for her to be evaluated since she is at risk. In our program, the evaluation covers fine and gross motor skills, cognitive skills, adaptive skills, and communication skills.
These would really be better questions to go over with her doctor in my opinion. I'm not at all familiar with Lobar holopresencephaly and microphaley.
All babies develop at their own pace. There is a suggested "normal" range for things like sitting, standing, walking, crawling, etc. But not 100% of children follow the timeline.
I babysit a 6 1/2 month old now (born on the fourth of July) and she is sitting unassisted and working on trying to crawl, but like your daughter she would much much much rather stand and attempt to walk! She loves being upright! She has only been sitting for a few weeks and still tilts over or slids down occasionally.
All children are just the way they are meant to be. Talk to your daughters doctor to see if she is where they are expecting her to be. Try not to worry and give her lots of love and encouragement!
I am sure this has been a very scary road for you! I am a board-certified music therapist in Indiana. There is a lot of good research on music therapy and neurology and how music can help with brain disorders, development, etc. If you are interested in connecting with a music therapist in your area, I could help you do that. Or you could contact the American Music Therapy Assoc. (AMTA) at musictherapy.org and they could assist you in finding a board certified MT (MT-BC) in your area who may be able to help by working with you and your daughter. Specifically, if you could find a NMT (neurologic music therapist) who works in pediatrics, that would be ideal. Best of luck!
R.
Tenacity and hard work overcome ALOT of obstacles. I work with muscular imbalances, dysfunctions, etc. ALL DAY LONG. I've had so many..."You can't," "You won't", "You'll never" and we've overcome pretty much all of them at least at some level if not far BEYOND what they were "supposed to" be able to do.
Keep working on those muscles!!! The human body is an AMAZING creation and has SUCH a tremendous capacity to heal itself when given the right stimulus. The "MIGHT BE", to me says, "I have to say that, but there's always a possibility she won't. Take the postive side of that and "run with it" and continue to "run". You WON'T regret it!
Love her for who she is. She sounds like she is more then ready to take on the challenge. Her skills sound on track to me.
