6mo old niece diagnosed with S.O.D. syndrome

[weHEARTmickey]

I posted this on the Family thread also...

My 6 month old niece was born about 1 month premature. She is not able to hold up her head, roll over, or make eye contact...things that a normal 6 month old (even preemie) should be able to do. Thankfully, her pediatrician referred her to Children's Hospital, where an MRI & check-up confirmed she has S.O.D. syndrome, fluid on the brain, and a malfunctioning pituitary gland.

They were told she would be "slow" or possibly mentally retarded, have poor eyesight & possibly go blind, and have stunted growth. Are any of you personally dealing with this syndrome, or know anyone who is? They are a young couple I want to be there for them in any way I can. Please pray for my precious niece & her parents.

 

[SueM in MN]

It is a rare disorder, so there does not appear to be a specific support group.
This website is helpful.
http://www.ninds.nih.gov/disorders/septo_optic_dysplasia/septo_optic_dysplasia.htm

That website has a link for a support group for people with growth disorders, which is one of the issues for people with septo optic dysphasia.

http://www.magicfoundation.org/www

From the 2 links, it appears that the visual problems are usually substantial, but the developmental disability can range from none to severe.
No one has posted before about this disorder as far as I can remember.

Hope the little one ends up on the mild end of the syndrome.

 

[weHEARTmickey]

It is a rare disorder, so there does not appear to be a specific support group.
This website is helpful.
http://www.ninds.nih.gov/disorders/septo_optic_dysplasia/septo_optic_dysplasia.htm

That website has a link for a support group for people with growth disorders, which is one of the issues for people with septo optic dysphasia.

http://www.magicfoundation.org/www

From the 2 links, it appears that the visual problems are usually substantial, but the developmental disability can range from none to severe.
No one has posted before about this disorder as far as I can remember.

Hope the little one ends up on the mild end of the syndrome.

Thank you, Sue! I have researched both of those websites. Because the disorder/disease (?) is so rare, I guess that's why I'm having a hard time finding much information on it. One website I went to had all these "memorial pages" for children lost to SOD. I DEFINITELY don't want to try to comfort them with that sort of website. (No dishonor to those poor families...I just want them to have hope, and they would be discouraged seeing that.) We lost my Mom almost 2 yrs ago to breast cancer, and death is not something they want to think about right now.

 

[mistysue]

I don't know anything about S.O.D., but how geographically close to them are you? If you aren't terribly far, they would probably appreciate somebody who could offer support with all of the appointments and therapies they are going to have to schedule. For example, if they have other children they may appreciate a babysitter, or maybe even taking the baby to a physical therapy appointment sometimes if they both have to work.

Once they get into the system, they will probably get referred for PT/OT and some sort of class with other babies through the schools, which will help them a little with meeting some other parents and possibly help them feel more "normal" too. IME, half the kids in those classes either have something rare or no diagnosis because they can't figure out what's going on.

My youngest has a rather mild hypotonia (head lag at 12 months, at 13 months is barely sitting, rolled ~9 months, still no crawling or standing) and we have a minimum of 2 appointments/week- before we see any doctors or get tests done. Of course, all of it is during the regular work day. Even if somebody stopped by with dinner once a week it would just help with the stress of the little extra things to do.

 

[BeveMom]

Speaking from experience, I think your best bet is to just give them support, and not worry about what the syndrome may or may not bring for their precious girl. When our son was diagnosed with his syndrome at 17 months, my father in law made me frustrated and sad whenever he would talk about what would be "expected" out of my child. What WE needed was for him to love and play with our son, and not say, "Hey, he's this age, he should be doing this..." or blah blah blah... does this make sense?

Just help them by offering to make meals, or help clean house, or even let them go out after the baby is asleep. (I'm assuming you live nearby) This is a stressful time for them, and they need time for themselves too.

 

[SueM in MN]

Speaking from experience, I think your best bet is to just give them support, and not worry about what the syndrome may or may not bring for their precious girl. When our son was diagnosed with his syndrome at 17 months, my father in law made me frustrated and sad whenever he would talk about what would be "expected" out of my child. What WE needed was for him to love and play with our son, and not say, "Hey, he's this age, he should be doing this..." or blah blah blah... does this make sense?

Just help them by offering to make meals, or help clean house, or even let them go out after the baby is asleep. (I'm assuming you live nearby) This is a stressful time for them, and they need time for themselves too.

Very good advice.

My youngest DD was diagnosed with Cerebral Palsy at 19 months.
The most helpful people were the ones who treated us the same as they did before the diagnosis. Our DD was the same person the day after the diagnosis as she was the day before.

The worst were those who acted as if DD had become radioactive or something.

 

[lanejudy]

I agree with other posters about not focusing on the diagnosis - other than to encourage them to contact their local Early Intervention and get an evaluation and services started as soon as possible. They will "grieve" the "loss" of what they once expected for their child, however she is the same child they have loved from birth and nothing - no diagnosis - will ever change that. Our DD was 16 months when diagnosed with a rare syndrome that includes developmental delays, so I can empathize.

As far as what you can do as support -- like others mentioned, if you are geographically close enough to drop by with dinners, stock the freezer, help with grocery shopping, do the laundry or some housework that likely is getting ignored, babysit other children - or babysit the baby to give them 1-on-1 time with other children who likely are/will feel "forgotten" at times, join them at appointments to be an extra listening ear. Most important - offer something specific, not a general "let me know what I can do" and wait for a response. Offer dinner, offer babysitting, offer to do the shopping. If they are like we were, we were lost in the moment and it was hard to know what I needed for help; but when someone offered to do something specific, it was always welcome.

Prayers for the child and all of your family and you begin life's journey down a different path than expected (and "Welcome to Holland" http://www.our-kids.org/Archives/Holland.html)!

 

[weHEARTmickey]

Thanks for all the great advice! I am close enough to help, and have babysat for them when needed. I'm definitely not one to focus on the negatives of a diagnosis, you won't have to worry about that! THEY have just asked ME questions, because I am the "big sister" who took care of our dying Mom. I guess I'm supposed to know a little bit about everything, KWIM Many times I'm a sounding board and I'm just hoping to get some background info on the illness. I don't pretend to know more than I do, I just know that they aren't the type to seek out support, such as the MAGIC Foundation. As I mentioned before, they are fairly young. Thanks again, for all the prayers & advice! It's all greatly appreciated

 

[ShockMonkey3]

Hello

My friends daughter was given this diagnosis as an infant. She is 12 now and greatly loved by her family.

I know only bits of their journey but I know it was very involved. Lots of specialists and definately early intervention services through the school. I remember she was small for her age at 6 months and was facing a lifetime of growth hormones injections(due to pituatory gland issue) They did not have a clear idea of what the future would hold. Last I knew of her school diagnosis was severe physical and cognitive impairments. For the longest time she did not walk but that little girl eventually passed that milestone and made her momma proud by learning to walk.

What I believed brought my friend through this hardship was the remarkable support from her immediate and extended family. I would visit at birthday parties and other gatherings and the love all her family showed this little girl was apparent.

Support the heck out of her and keep supporting her. Your neice will have a tough time for a long time. I grieved when my son was diagnosed with autism at age 2. Ironically it was this same friend I went to for support through the grief. She amazes me with the strength she found. Your neice will amaze you too, but now she needs your love.

 

[ShockMonkey3]

And

I will contact my friend and ask about support groups. We are quite a ways away from you though in Michigan. But maybe it will be a start.