Mother of a 22 month old with Myelomeningocele Spina Bifida

[monica]

Hello, I am a Mother of a 22 month old boy with Myelomeningocele Spina Bifida and I am looking for other Mothers of children around my sons age with spina bifida. I live in Oregon and would like to connect with others that really know what I am talking about. I hope to hear from others. Thank you. :*)

[Dodger67]

Hello Monica
Welcome!
I'm not one of the mothers you seek but I can offer you the experience of having lived with SB for 41 years and counting...
One of the real strengths of this forum is precisely that we are not only mothers.

[Sheena51985]

Hi and welcome! I'm Sheena. I'm not a mother, but I, myself, have Myelo SB and Hydrocephalus as well. I'm 23 years old. Glad you joined us!!

~Sheena

[monica]

Thank you so much. I also am looking for just friends with SB so that I can learn more from someone who has lived it. What kind of SB do you have?

[monica]

Thank you for replying to my post. It is always great to meet new people. I also am looking to meet people who themselves have SB because I think that I can learn a lot from them for my sons sake. I know that he is only 22 months right now... but I think that it is never to earlier to start learning more things about sb and how people have personally delt with it.

[Spiffynikki]

Hi Monica! I am pretty new here as well. I have a five year old daughter with Myelomeningocele and hydrocephalus. Welcome to the board. I have already found a ton of useful information here!

[monica]

Thank you. I am learning really fast that there are wonderful people on this site and I am very excited and happy to have joined it.

[smoop]

Hi Monica. My name is Renee and I have a 3.5 year old daughter w/MM level L3-4ish, VP shunt, Chiari II. Analise is cathed 6x/day, takes ditropan & miralax, wears KAFOs, and walks with crutches. She has a 5 year old brother named Colin. Welcome to our group!!

[angel]

Thank you so much. I also am looking for just friends with SB so that I can learn more from someone who has lived it. What kind of SB do you have?

Oh Monica you name it and at least one person on this board has lived it. You are absolutly in the right place. My name is Angel I am 31 years old, married, with a 12 year old son with SBO and a 12 year old step son. I have SB Myleo level L4/L5.
It is really more like a family here so jump right in there is always room for more!

Angel

[Summer25]

Welcome Monica! My name is Summer. I am 25 and live in Florida. I have Myelo at T10 level when I was born. I am now paralyzed from the chest down though. I am in a wheelchair. I have had about 50 surgeries and facing the possibility of either a shunt revision or an Arnold Chiari decompression depending on what the MRI says. I am in college. I also work at a wheelchair company. Just wanted to say hi!

[docshoney]

Welcome,
My daughter Jenna is 8.5 months with a lipomeningocele. We are currently awaiting a third opinion to find out how we are going to procced. I live in the Seattle area.

It was suggested that we might go OHSU to visit with the docs there. How do you like them?

Erin

[monica]

Hello Renee, like your daughter... my son is also cathed 5 to 6 times/day. He also has a VP shunt, Chiari II, takes ditropan and miralax. He was diagnosed when I was 18 weeks pregnant. He has a L5-S1 lession. It feels so good to finally connect with people who know exactly what you are talking about and can totally follow along with what you are saying. I am still learning this site and I am not so computer smart so if I post things in the wrong spots... please excuse me.

[monica]

Thank you. Knock on wood we have not had to see the Dr.s that much, but we did have our son up at OHSU and I do see there group here in Eugene at the Spina Bifida Clinic. They seem to be very good Dr.s and stay on top of things well. My son has Myelomeningocele... what is the difference between that and what your daughter has?

[LisaJoy]

Hi, Monica! Welcome aboard. I also have lipomyelomeningocele -- it is a closed form of sb. It involves the same kind of bony defect as myelomeningocele, but instead of the spinal cord being exposed or in a sac, it is tethered in a lipoma (a benign fatty tumor) and covered with skin. It involves a lot of the same problems as MMC, except that it is not as often accompanied by hydrocephalus. Like with MMC, though, there is a lot of variation from case to case.

I'm 44 and a college history professor; I walk with an AFO on the right and one crutch & have neurogenic bladder (cath, ditropan).

Lisa

[bcain]

Hi, my name is Beth, my dd is 16mos old. She just started walking this week.
Any more than 4 steps, she's gets so excited and falls down. She's very smart, and active to a fault. She won't sit to play with toys. She's trying to get into everything, climb everything. Her physical ability limits were accurately predicted so far. She will not be able to stand on her tip toes.
She will have bladder and bowel issues., Hydro is unlikely after 18mos. We are blessed she is so healthy, and vigorously active. Our doctors have given us good news. It didn't seem like it at first, but now I notice every little achievement and feel blessed and joyful by it.

Welcome here, love to share parenting tips of cathing in public, constant diaper changes in public with others.

Beth

[monica]

Wow sounds like your daughter is doing great... that is wonderful. My son is 22 months and he can take about 10 steps between me and his dad, but only when he wants to. I think that he could do a lot more... but I do not want to push him to much and turn his progress around so we just keep at it but do not over due it. He also climbs on everything, his latest was last night he climbed onto the kitchen chair and then onto the table... I was absolutely shocked. When it comes to cathing in public, we try not to have to... but when it it necessary I try to just put the diaper bag or myself in a possition that can some what hide him and make it a little more descrete, or private for his sake. I have had some looks but no one has ever said anything. I have always said that if anyone ever says anything then I will just simply explain to them what I am doing and why... and if they have a problem with it then I will tell them well if it was your child I am sure that you would do the same thing at least I sure do hope so. So that is how I deal with public cathings. It was so good talking to you and I hope to hear from you again. :*)

[monica]

Thank you for letting me know what your type of SB is... I get confused with all of the different types.

[bcain]

Monica, thanks for your reply. I haven't had anyone ask me what I was doing yet,(while cathing her) but I do get nervous thinking that they'll think I'm doing something wrong. Guess I'll cross that when and if that occurs.

My dd has myleomeningocele, S1-3. Your little guy sounds like a climber too. Boy it sure scares me when they climb and have no fear. That's so exciting that your son is taking steps too. I'm still trying to get my dd to talk.

Beth

[rachiebaby]

Wow sounds like your daughter is doing great... that is wonderful. My son is 22 months and he can take about 10 steps between me and his dad, but only when he wants to. I think that he could do a lot more... but I do not want to push him to much and turn his progress around so we just keep at it but do not over due it. He also climbs on everything, his latest was last night he climbed onto the kitchen chair and then onto the table... I was absolutely shocked. When it comes to cathing in public, we try not to have to... but when it it necessary I try to just put the diaper bag or myself in a possition that can some what hide him and make it a little more descrete, or private for his sake. I have had some looks but no one has ever said anything. I have always said that if anyone ever says anything then I will just simply explain to them what I am doing and why... and if they have a problem with it then I will tell them well if it was your child I am sure that you would do the same thing at least I sure do hope so. So that is how I deal with public cathings. It was so good talking to you and I hope to hear from you again. :*)

That is great to hear that he is a mover, I have the same exact form as your son, same exact area and all and I can walk with or without braces but I do get tired pretty easily but I think it's just because I'm not active and not really in great shape

[usolyfan]

Hi Monica,

I am new to this board but am also from Oregon. Our daughter is three and has mylo (L3-L4), shunted hydro, neurogenic bladder (cathed 5x). She wheels and walks with RGOS. We are in Salem. Where do you live?

Jill

[simmy]

I have just registered here. I have a 3 month old baby boy born with sb. I am still trying to come to terms with it as noone diagnosed his condition during pregnancy. In fact I was always told that all was well and on one occasion my doctor told me the baby's spine is fine there is no sb case. i still wonder how they could miss it. I love my baby and i want to do the best for him. I am really happy to find a place like this where you can open your heart and find people who understand you.

[janjanwhit]

Hello. I also have a 3 month old baby boy with sb. He was diagnosed at my 20 week scan. He is myleo L3-L5 with non shunted hydro. I have no idea what it would be like to find out at his birth about his sb. I suppose at least you enjoyed your pregnancy. I think everything happens for a reason. I dont know why sb happened to my baby yet, but I am coming to terms with it.

[valerie]

Welcome Monica i have a 10 month old baby boy Cian with Myelo L1/L2. He had a shunt inserted at 7months. Doing very well at the moment, i only joined here last week too but so good to talk to other people who are feeling the same things as us. x

[Theresa]

Simmy - my daughter is 2 years and 1 month, she was not diagnosed prior to birth either, it's a huge shock...but it does get better. Each child is different and you will be happy you found this site. I think it took about a year for me to find it. Flynn has SB at L4-L5, shunted, and is just now beginning to walk between my husband and I when she is in the right mood. We just had our yearly SB clinic in Detroit, and they don't want to do any surgery or bracing right now. So I guess we will just continue with physical therapy and go from there. Good luck and hang in there.

[tanya]

simmy and janjanwhit--just hang in there and take it one day at a time our son is now 9 years old and is doing good; each day has its ups and downs but you just venture through them if any questions just ask

[Barb]

I have just registered here. I have a 3 month old baby boy born with sb. I am still trying to come to terms with it as noone diagnosed his condition during pregnancy. In fact I was always told that all was well and on one occasion my doctor told me the baby's spine is fine there is no sb case. i still wonder how they could miss it. I love my baby and i want to do the best for him. I am really happy to find a place like this where you can open your heart and find people who understand you.

Not sure if you have read my story or not but I had normal AFP, 6 ultrasounds (because I was sure something was wrong) and even had my appendix removed at 22 weeks (in which he was monitored whole time). They kept telling me I was a nut case, everything was fine. LOL! :fyi:

[valerie]

Cant believe that, its so unreal to know that it was happening the whole time & you were monitored. i had several scans also & i remember in one the spine was pointed out to us & still nothing came up. It is a complete shock and still 10 months on, i keep asking questions but am learning to try & not focus on this all the time because Cian is great & is doing well at the moment....

[simmy]

I am so happy to find this site and to read all posts. It makes me feel better to read and realize that I am not alone. When my son was born I felt really guilty. I blamed myself for what he has. I knew I had taken folic acid but I was sick all the time so I do not know how much of it was absorbed. I still wonder what had gone wrong with this pregnancy as I already have two kids who have no problems at all.
His doctor tells me that for 3 and a half months he is doing fine as he is already turning face down when he is lying down. He started teething already.
I just pray that he does not have too many problems and challenges.

[bea22]

yes that's true, as we all passed through this experiences, we are very lucky to have them in our life, we love our kids so much no matter what happends to them. just don't blame yourself from what happend to him, it's all God's will and he has plan for us to do, just hold on tight and never ever lose hope. hi, i am a mother of a 3 years old with sb myelo L1-L5, she has no sensation on her legs and cannot walk yet and also has vp shunt. I am a mother full of strength for my only girl and for now we always go to the hospital for regular therapies and follow ups. Welcome to our site and God bless always..

[valerie]

Hi Bea,

i'm valerie, i have a 10month son with SB Myelo L/L2, Cian too has no sensation in his legs unfortunatley, can i ask you does your little girl crawl with her hands, if she does at what age did she start, Cian is getting very restless up the arms lately but when he goes on the floor, he does a few press ups with his hands & then down again.