Hi moms. I'm really hoping somebody out there can help. My son (adopted at birth) will be 3 in July. Just before he turned 1 we noticed what the doctors were calling "global developmental delays." Since then he has been in OT, PT, and Speech therapy and is currently functioning at around 18 months of age in all catagories. We had genetic testing done very early on but came up with nothing. The genetics dr told us that he really believes his issues to be genetic, but we needed to wait to notice more symptoms before continuing. It's been almost two years and I have noticed plenty, but am hoping that you all can give me some guidance if you have been in my position before we go down this road again. Here are several of his symptoms: developmental delays (speech, fine and gross motor), learning delays, soft cartilage in ears (also low-set and large), wide set eyes, feet turn in and under, problems with hips, small lower jaw, behavioral problems, extremely happy, not aware of stranger-danger, gray-matter heterotopia (and I'm sure I've missed a few). He has also been diagnosed as PDD-NOS, but all three dr's that have given this diagnoses believe something else is going on, but can't figure it out.
I hope that one of you smart ladies recognizes some of these symptoms as something we haven't thought of yet.
Thanks for your help!
My friend has a son with a speech disorder called Apraxia. He is doing much better with his speech after therapy.
Have they ruled out a Fetal Alcohol Spectrum Disorder? Do you have any information about his birth parents or siblings? I hope you find an answer soon!
I can't give you any insight into what is going on with your son, but I wanted to let you know what an awesome Mom you are. You are doing all the right things for your child, and the earlier the better. I've seen some children, Down's Syndrome, for example, who have achieved almost grade level because their parents intervened early on.
I have a 27-year-old autistic son who lives with us and attends a day habilitation program every weekday. I suspected something was "wrong" with him when he was about 17 months old. What took me so long was his pediatrician who kept telling me that he would catch up and that his delay was due to his prematurity (born 6-1/2 weeks early).
Anyway, keep on pushing. If it's up to the doctors, they will always say "wait and see". If you hear of someone else who might have some insight into what is going on with your son, by all means, go see him.
Keep up the good work, Mom. I know it's exhausting, mentally and physically, but you will be SO GLAD you put forth the effort early.
May God bless you and your little family.
Have they considered Fetal Alcohol Syndrome? Some of the symptoms resemble symptoms of children with this disorder. I am not an expert, but have worked with children as a social worker and now a teacher, so I have seen FAS before. In any case, I wish you luck and God's blessings.
R. F.
My heart breaks for you and your son! It must be so frustrating, not getting an answer.
In case this helps, here is a link that describes of 187 genetic conditions that have particular facial features. The other link on ear deformities provided 1200+ conditions. Reading through the lists, you really need to have seen/know the individual in order to know if any are possible matches. Hope this info is helpful.
http://www.wrongdiagnosis.com/symptoms/facial_feature_sym...
http://www.wrongdiagnosis.com/symptoms/ear_symptoms/cause...
(If you click on a particular syndrome, it will take you to an overview of that condition. You can then click on a link that list all symptoms instead of the short list on the overview page.)
Kudos to you for going ahead and getting started on services. Having a child diagnosed w/PDD-NOS then changed to autism, I know the importance of having started services early.
I am sure when you had the testing done they checked for this, but if not you might want to check it out. Children w/autism(PDD-NOS falls under that umbrella) can have a higher rate of Fragile X syndrome. A few of the things you talk about fall under their characteristics.
Good luck and keep doing what you are doing!
Look up williams syndrome... They have to do FISH test to see if this is what he has. My daughter was diagnosed with this at age 6months. You can go to the williams syndrome website and look at pictures of the kids see if he resembles the features. Keep me updated good luck and if you ever need to talk i'm here
There is a very special place in heaven for adoptive mother's like you. Good luck with everything.
It seems to me you have done as much as you can and have enough to go on - and that you are meeting his needs and getting all the special help you need - you are his biggest and best advocate! A name for his problems isn't important, just continue doing the best for him and yourselves. Bless you!
Dear E.,
I am not responding to the genetic issues as I am not familiar nor qualified to address those ..but I am responding to the adoption and to let you know about an organization in the Austin area called Adoption Knowledge Affiliates (AKA) that is a nonprofit organization that provides education and support to anyone touched by adoption. This organization has been EXTREMEMLY helpful to our family and I would highly recommend that you check out the web site and visit a meeting when you have an opportunity...The meetings are on the 3rd Monday of each month and there is always an educational componet and then a support group...the prospective and adoptive parents meet in one area, the birthparents and family members meet in another area and people who are adopted meet in another. Anyone is welcome to attend any group. The web site is http://www.adoptionknowledge.org/newsletter/newsletters.h....
Good luck.
Dear E.,
I have been in your shoes. I, too, adopted a son at birth. He was perfect in that delivery room and in the days and months that followed. Then at 3 months I noticed he had white heart shaped spots in his eyes. He was diagnosed with congenital bilateral cataracts. This began our journey. After cataract surgery (both eyes), we began testing to determine the etiology of the cataracts and were told it could be neurological... and it was. After a year of taking him sometimes twice weekly on 300 mile trips to neurologists, geneticists, ophthalmologists, and every doctor in between it was determined that my darling child had been exposed to CMV (cytomegalovirus) from his birth mother during her first trimester. I drove myself CRAZY during that time of trying to find some diagnosis to hang onto so that I could research and find some kind of solace in knowledge. My beautiful child is now 7 and I'm still not convinced of his diagnosis. However, I had to stop. I had to stop searching for that one thing to grasp onto because I realized it was stealing my happiness and it was stealing time from loving him. In hindsight, I don't know that a clear diagnosis would have made much of a difference. I do know that you are doing the right thing by early intervention. I do know that you love your child and I do know that he is blessed to have you as his mom. I don’t have any guesses at what might be wrong with him but I am positive that there are a million things that are right about him. I hope that you find peace in your heart and an understanding that sometimes a firm diagnosis is not as necessary as we think. I do still struggle because I don’t understand, but I am a better person because I finally realize it’s okay that I don’t. The best thing you can do for him is be his advocate and learn all you can about the obstacles you will face as an advocate for a child with special needs. There are a lot of programs out there and a lot of closed doors, but you will in time learn to open them. Ask questions and demand (in a gracious way) the answers. God bless you and your precious babies. I, too, am the mother of twins (yours are 3 months apart). It’s a wild life!
Does your son have a depressed nasal bridge? My 6 mth daugther has Down's and I've done TONS of research. While waiting for the test results, I knew from her features she had some chromosonal abnormality. Fetal Alcohol Syndrome also has a lot of the same symptoms and features.
Either way, I believe as well there is something more going on. Genetic disorders all act in the same way generally. I would treat them as such. I was very encouraged by reading about nutritional therapy. I highly recommend researching nutritional therapy and developmental delays. There is a Nutrivene D I'm interested in formulated for Down's patients.
I started adding a vitamin (Pana C 315, very comprehensive and got from health food store) to my daughter's formula cereal mixture. We ran out and I started to use my son's pediatric vitamin, also a very good vitamin but not as comprehensive. I started to see a decline in her PT results and overall alertness. I could feel myself getting depressed about her condition. I was curious if the vitamins were really making that big of a difference and switched her back to the Pana C 315 and upped the dose from children's dose to close to an adult dosage. Her development is skyrocketing. The day care had even made a comment about how much more active and interactive she is. That mother's feeling of "We are where we need to be" has returned.
Any kind of syndrome has a different metabolism and different overall needs. Hone in to what makes a difference for your son's body and mind and go with it. I do believe God has given us everything we need for good physical and mental health through diet and exercise. It's just finding exactly what it is we need.
Have they tested his thyroid? If not, get it checked.
God bless you and your life and your family. You've done a remarkable job for God taking charge of two of His most prized creations. He will guide you as He's guided us. And even with Down's, I count my blessings every day because we have so much to be encouraged by and aside from more than usual appointments, our lives are "normal." I pray for the same for you.
don't know much about this but all I can say in nutrition nutrition nutrition .... feed the babies brain eat healthy and give supplements stay aways from so many sweets. trry to go as natural as possible.....
Be Blessed
www.shaklee.net/healthydesire
My little boy is still seeing a genetecist... he also has a heterotopia, no labels for any of it yet... Just curious... have gotten a formal diagnosis yet? or do you still just have the PDD-NOS? Our Boys are about the same age. Mine is also Adopted. His Heterotopia is on his L- Lateral Ventricle and has a mosaic pattern. Now we are just waiting to see... if it has any implications to his other issues. Good luck... I will let you know If I find out anything. :o)
