Additional medical conditions?

[sbmama]

Does anyone else have other medical conditions on top of spina bifida? My daughter has several chronic health issues on top of spina bifida, and for the most part they seem to be completely unrelated. Between her sb clinic doctors and all the other specialists she needs to see, we are at the Children's hospital all the time. I've gotten the impression that this isn't the norm. Despite everything, she's doing really well, but I was just wondering if anyone else has gone through something similar.

[ibelieve]

Sounds like me. My neurological problems are from a tethered cord and didn't really start until high school/college.

But in addition to the neuro issues (which are increasing) I also have type 1 diabetes, thyroid disease, asthma, allergies, acid reflux, tmj, severe tendonitis in my right hand and a few other issues.

I have a very hard time keeping up with all my doctors appointments, follow-ups, tests, ect. And when new symptoms or problems pop up it takes a while to find a doc who can get to the root of the problem. I almost never see my family doc, I'm too busy going to all the specialists!

But that being said I am fairly active, work full time (teaching 2 year olds) although I still need some financial assitance from my parents due to all the of the medical bills. Some days are harder than others but all in all I am living life and doing well.

[chandrick]

My daughter has some others but they are related to sb. She has sacral agenesis, club feet, hip dislocation, anus deformity and displacement, dysplastic aortic valve,hydro,mylo,chiari malformation,torticolis. So far!

[NerdaliciouS]

I have lots of issues, both related and non. That's just life. You either have something wrong or you don't.
I just hate keeping up with appointments. I miss a lot because there's so much going on... Blehhh, stupid appointments...

[Dodger67]

I had a bicuspid Aorta valve. It was discovered (quite dramatically) about 5 years ago. It was fixed by replacing it with a ceramic valve. According to my cardiologist its one of the most common congenital heart defects and not related to SB or any other condition.

[eng188]

Well, hydro. Pretty common. But also hypertension, which is related to obesity. I used to be an athlete as a teen. I did wc track and field (National WC Athletic Assoc.) and road racing. But come cxollege, I completely lost my compass, and started eating irresponsibly and not exercising like I should.

Probably trusting able-bodied people too much when they'd walk past me while I was walking a short distance and saying "Getting some exercise, I see! God bless you". No indeed, just walking a few feet is not exercise. Gotta work to metabolize.

Other than that, really nothing besides some particulate allergies.

[sbmama]

Sounds like me. My neurological problems are from a tethered cord and didn't really start until high school/college.

But in addition to the neuro issues (which are increasing) I also have type 1 diabetes, thyroid disease, asthma, allergies, acid reflux, tmj, severe tendonitis in my right hand and a few other issues.

I have a very hard time keeping up with all my doctors appointments, follow-ups, tests, ect. And when new symptoms or problems pop up it takes a while to find a doc who can get to the root of the problem. I almost never see my family doc, I'm too busy going to all the specialists!

But that being said I am fairly active, work full time (teaching 2 year olds) although I still need some financial assitance from my parents due to all the of the medical bills. Some days are harder than others but all in all I am living life and doing well.

This sounds a lot like our situation! We don't see her regular ped much, but we go to different specialists several times a month, and she's had to have a lot of testing done.

My daughter has some others but they are related to sb. She has sacral agenesis, club feet, hip dislocation, anus deformity and displacement, dysplastic aortic valve,hydro,mylo,chiari malformation,torticolis. So far!

Related to spina bifida my daughter has tethered cord syndrome, a lipomylemeningocele, and neurogenic bowel and bladder so far. She doesn't actually have hydro or chiari. All the other issues she's had haven't been things that usually go with spina bifida.

I have lots of issues, both related and non. That's just life. You either have something wrong or you don't.
I just hate keeping up with appointments. I miss a lot because there's so much going on... Blehhh, stupid appointments...

Yeah, having so many appointments is rough. We have to take her into the hospital monthly at a minimum and usually we have 2-5 appointments per visit and testing... And then clinic! It's a lot for her to have to go.

I had a bicuspid Aorta valve. It was discovered (quite dramatically) about 5 years ago. It was fixed by replacing it with a ceramic valve. According to my cardiologist its one of the most common congenital heart defects and not related to SB or any other condition.

Wow, it must have been shocking to find out you had a congenital heart defect as an adult!

Well, hydro. Pretty common. But also hypertension, which is related to obesity. I used to be an athlete as a teen. I did wc track and field (National WC Athletic Assoc.) and road racing. But come cxollege, I completely lost my compass, and started eating irresponsibly and not exercising like I should.

Probably trusting able-bodied people too much when they'd walk past me while I was walking a short distance and saying "Getting some exercise, I see! God bless you". No indeed, just walking a few feet is not exercise. Gotta work to metabolize.

Other than that, really nothing besides some particulate allergies.

She actually doesn't have hydro. All the issues she has don't seem to be related to the spina bifida or to each other, but she does get tired really easily. She needs way more sleep than is usual for her age and gets really worn out if she doesn't get enough sleep.

[Nettie]

My daughter has some others but they are related to sb. She has sacral agenesis, club feet, hip dislocation, anus deformity and displacement, dysplastic aortic valve,hydro,mylo,chiari malformation,torticolis. So far!
Have you heard about VACTERL Association or syndrome, Chandrick? I don't want to be an alarmist, but since it's not really a diagnosis, but rather just a term used for several different diagnosis, you can maybe read up on this. I may be wrong, but I think I read somewhere that you mentioned your daughter also had a kidney-problem? This, associated with a heart problem, back deformities and anus deformities, may point to VACTERL or like some call it, VATER syndrome.

[ibelieve]

Related to spina bifida my daughter has tethered cord syndrome, a lipomylemeningocele, and neurogenic bowel and bladder so far.

That's my exact sb diagnosis! I've never heard of anyone else with lipomyelomeningocele!

[LisaJoy]

There are quite a few of us on here with lipomyelomeningocele -- welcome to the club!

[carrieandcam]

My son cameron, now 9, was born with erbs palsy, and then when he was 5 he was diagnosed with lipomyleomeningocele, tethered cord, neurogenic bladder/bowel, and chiari 1 malformation.

[chandrick]

Nettie, no I have never heard of Vacteral bofore. And yes Leah has an underdeveloped kidney. Her left one funny thing is her father has one also. I will definatley look into the info you gave me thanks a million!!

[hope&faith]

Alex has/had two kidneys that appear to be fused together, he has some urology issues (he's fused with extra skin and will be getting surgery next month to correct), he also has respiratory issues but I'm told a lot of these issues are very common with premature babies.
Holli

[dahliafaolan]

That's my exact sb diagnosis! I've never heard of anyone else with lipomyelomeningocele!Hi! I've got it too.

[eng188]

Being on this website, as I have since 2007, has given me my first exposure to lipomyelo. I had never heard of it before then.

[Lifeisgood]

Hi! I've got it too.
I am part of this club as well.

[sbmama]

There are also a handful of moms who have joined recently who have young infants with lypomyelomeningoceles. :)

[n3rdchik]

We are in that club, too. My understanding is that LMMC is not linked to folic acid - that while some spina bifida rates are on the decline, LMMC has been constant even with the supplementation campaign in the US and Canada. (I haven't seen literature on the rest of the world...) I think we will see a higher % of new joinees (or their kids) with LMMC.

[Gymp]

That's my exact sb diagnosis! I've never heard of anyone else with lipomyelomeningocele!

Me three here...

I was also born with 3 holes in my heart (one of the first in Canada to be able to have it repaired through surgery in the early 1960's).My left kidney was a floater (it didn't work at all) as well.

Gymp

[ibelieve]

Wow, never knew there were so many out there like me. I love this forum! If I've got time before I pack my computer (I'm getting ready to move) I'll post some lipomeylomeningocele questions.

[ChrisinGA]

For my part, I have hypertension, frequent urinary tract infections (the frequency seems to have increased lately), acid reflux and lung damage caused partially by Macrobid, an antibiotic I was taking for urinary tract maintenance.

[Alvy]

That's my exact sb diagnosis! I've never heard of anyone else with lipomyelomeningocele!

Hey! I've got that too! Another one to the club! =)

[Dodger67]

http://en.wikipedia.org/wiki/VACTERL_association

[angel]

Have you heard about VACTERL Association or syndrome, Chandrick? I don't want to be an alarmist, but since it's not really a diagnosis, but rather just a term used for several different diagnosis, you can maybe read up on this. I may be wrong, but I think I read somewhere that you mentioned your daughter also had a kidney-problem? This, associated with a heart problem, back deformities and anus deformities, may point to VACTERL or like some call it, VATER syndrome.

My son was misdiagnosed with this. His genetics doctor thought he had it. The more i did my own research it didn't fit my kid. He did have a heart murmer (which is not uncommon in my family) his butt has no muscles or fat (this was the thing that he said proved he had it). I got a second opnion and that doctor said he doesn't have it. A lot of the deformities are more extreme than anything my son had and he wouldn't classify him with Vater syndrome. This is the first place i have ever heard anyone else mention it.

Angel