Tethered Spinal Cord & Helping with Understanding Blood Draws

We're always amazed to see support and stories for other mamas about their experiences with difficult medical situations.  Cindy recently emailed us about her child's diagnosis of Tethered Spinal Cord.  Have you experienced this? And can you give her some advice?

I am seeking information from your wonderful community.  I have a wonderful six year old boy (almost seven!) who has been struggling with potty training for most of his life.  We were finally referred to a Pediatric Gastroentologist about six weeks ago and found out yesterday that he likely has a Tethered Spinal Cord.  We have to confirm with a Neurosurgeon and discuss treatment options.  However, our doctor and apparently all of the information available on the internet, says that surgery is the only effective option.

I would love support on a couple of fronts.  First, has anyone gone through this surgery with their child?  We had to use General Anesthesia to do the MRI this week so I know he tolerates that anesthesia well.  The anesthesia for the surgery may be different.  I am also finding information on-line that says once nerves are damaged, there is no repairing them.  Does anyone out there know if he may, someday, have control over his bowels and bladder?

The other element I’m interested in is how to help my four year old through this chapter of our lives.  We had to have blood drawn on my six year old several weeks ago for this issue.  My four year old and I had to take him and I think the little guy was the most upset out of all of us.  He somehow has associated blood with dying and so any quantity greater than just a scratch really scares him.

Are there grants available for housing?

It absolutely takes a village, and part of our goal in building the urbanMamas community is to offer resources and guidance to all.  We received a recent email from a mama just outside Salem requesting help accessing grants or other financial assistance to buy a home:

My name is Starla I live in Stayton, OR.  I am 37 years old, single for 9 years. I have 3 kids each with a different type of mental disorder. My daughter is 14 with OCD, Trichotillomania, OCD Hoarder and ADD. One son is 12 with Autism/Asperger’s, PDD and ADHD.  Last but not least my 10 year old son with Bi-Polar and ADHD. My children are my world.  We moved to OR from CA so I can get my children more help through the school and Therapist, things are doing so much better here. I have a Home Day Care, that is so I can be more convenient when I have to drive my children to all of their appointments (therapist, Med Prescribers, a Home Skill Worker, or school teachers or counselors). I just went back to college in Oct. 2007, this is the start for me to a whole new career; my goal is to be a family Therapist for children with mental disorders.

Being a single parent with children with mental disorders, my job options are limited and the so are my finances. I would love to be able to buy a home for us.  I am renting a duplex so the maximum number of children that I can have in my Daycare is limited to 5 children.  If I had a home I would be able to have 10, and that would double my income.  Also my children are loud and they bother the neighbors on the other side of the wall (the neighbors know about my children and their mental disorders).  It is hard enough to try to control the children, and - when a neighbor comes over and gets in the middle of it - that makes it much harder.  My son (the one who has Autism) thinks that the neighbors want to kill him and I can’t get him to play outside, and he thinks that the owner want to kick us out (they don’t).  He lives in fear all the time. My daycare children are wonderful, and my children love them.  They all get along with the great.

If there is a grant that can help my buy a home for us that would help us out so much.

What are resources statewide (or even in Portland that could potentially have similar programs in other cities) that you could suggest? 

The Asthmatic Child

Do you have an asthmatic child?  Have you been able to help your child better manage the condition?  Elizabeth would love to hear from you.  She emails:

I am looking to connect with other folks that have kids with chronic respiratory challenges. My son has been identified as opportunistic asthmatic. It is not allergen-based but more when his immune system is lowered or when he has some other virus, cold etc. I am trying to manage this condition and would love to hear how others deal with the challenges with medicine, inhalers, reactions to medications, hyper-activity etc. It seems like a constant cycle and I would love some perspective.

Baby's got the bug

In our household, it felt like a little kid infirmary over the weekend.  Both of our children fought fevers and pretty much stuck to sleeping all day long on the couch, sick ask can be.  Fevers have been running between 102 and 104, for which we have been giving chewable Tylenol (since we have no Motrin in the house).  I regretted not giving them some immunity boosters or even a flu shot earlier in the season.  Not too many other symptoms, other than the lethargy and fever.  One daughter has been fighting the fever for almost 6 days now, and the other is on her second day of fever.  On this Monday morning, I expect the trend to continue.

We received an email from Virginia last night, and we're all wondering, is it happening to you, too?

I'm checking in to see if any of your little ones have been really sick over the past couple of weeks.  My two year old woke up from his nap last Tuesday hot as a  lit match. I gave him Motrin.  The second it wore off, his fever went through the roof again and he had a febrile seizure and we ended up in the emergency room with nearly a 104 degree fever out of nowhere.  It was horrible.  He seems to be feeling much better but he's been complaining that his stomach hurts and today he seems to have a little nagging cough.  I've taken him to his doctor too.  On top of it, he's not congested at all.   What's going around???  I'm not one to worry over getting sick but this is a weird bug.  Have any of your kids had similar symptoms and how has
this one played out?  Thanks!

Put the thermometer where?

Fall is a lovely season, with the cooler weather and the falling leaves.  But as we roll through the change of seasons and back to school, no matter how much hand washing we do, there's bound to be a little sick going around.  Right now, my one year old has an ear infection.  In addition, I'm fairly certain that he's teething, too.  Add to that sleepless nights and I had one fussy bub on my hands this morning.  Halfway through the morning I thought he felt warm, so I headed upstairs to my "getbetter" arsenal to see if I could actually locate a thermometer.  I'll be frank and say that I've never owned a rectal thermometer for the babes.  I feel like it might be dangerous to try to wrestle them to stay still while somehow involving glass (and mercury?, surely not...).  Instead I stock three different type of thermometers for the little ones.  First, the ear scan thermometer, which is useless if you don't have the little covers, or if the battery runs out, or if the child is less than 2 (or3)?  Chuck that one out.  On to the next one, the flimsy digital read out kind that also needs a cover, but I don't use the covers when I put them under the arm.  I push the button and then try to wrangle my moody fussy baby to stay still while I pin his arm down long enough to register some kind of reading.  Result?  95.4°F.  Nope, don't think so...  even when I add a degree it's not even reasonable.  Last, and most desperate, attempt was made with the "binky" thermometer.  Apparently my child doesn't use a binky right because it decided his temp was 95°F.

I gave up.  I have many unreliable ways to guess whether he has a fever or not.  No good ones.  How do you check if your babe has a fever?  I usually end up going with my gut (and feeling their hands -- if their hands are warm it's unusual and means there is a fever).

Seeking support for Sensory Integration/Processing Disorder

"Sensory Processing Disorder (SPD) is a complex disorder of the brain that affects developing children and adults."  There have been suggestions on preschools for children with sensory integration disorder and there was previous discussion on finding a support group for parents and children with sensory integration disorder.  But, did a group ever form and gather?  Beren is seeking support and would like to get convene families:

I’m looking for a support/social group for Portland mamas with Preschool aged kids with sensory processing disorder that impedes their ability to attend or succeed in preschool or Pre-K. I’m feeling a little alone and would love to share stories, offer support, and cry together over administrators who just don’t get it. Are there any other stay-at-home moms or dads who meet up during the weekday?—Mom of 3 in NE Portland

In sickness at the daycare?

Every child will get some kinda sick in their childhood.  If your child is in daycare, what are the rules - the hard and fast rules, the "it'd be nice..." rules?  How about when your daycare provider is sick?  An urbanMama emails:

I was wondering if you could post a question concerning daycare etiquette.  What kinds of rules do people follow with regard to sending their kids to daycare when they have colds/flus/fevers/ear infections?  What do folks do when their daycare provider is sick?

Treating Asthma/Allergies through Nutrition

Diana is looking for guidance and advice for a diet/nutrition makeover to help alleviate symptoms of asthma and allergies.  Can you help?

Hi, I'm the mom of a 3 year old boy and 20 month old girl.  Last spring, my 3 year old started to show signs of asthma and some allergies.  It seemed to last all spring, summer and unitl the end of fall.  We did the doctor/inhaler thing, but - when the doctor reccomended steroids - I decided to do some research before we went any further. 

In doing so I've come to learn about the use of diet to control the immune's system reaction to allergens.  I' ve read lots of good books on natural remedies and they suggest tayloring the child's diets of wheat, gluten, dairy and other trigger foods.  I've decided this spring before his allergies and asthma start again, I'm going to make a "big" switch in our diet to see if this helps.  It's also used in treating Autism and ADHD (part of the 4 A's including Asthma and Allergies). 

Are there any other Mamas out there who are using this nutritional technique?  This is going to be a huge change and I could use some tips and support on the subject.  I'd love someone who wouldn't mind showing me around the grocery store at some good choices.  We eat healthy now, but we will miss the milk and cheeses!  Is there a support group out there?  Any information would be a big help.  Thanks so much!

Seeking Parent of Hard of Hearing Children

Meg is seeking other parents in a similar situation:

Hi everyone!  After months of testing, we now know that our 10 month old son is hard of hearing and will require the use of hearing aides.  He has moderate hearing loss and should develop normal communication skills with the use of the aides and early intervention services.  We know there must be other urbanMamas and papas out there who also have a child with hearing aides (whether profoundly deaf or mildly hard of hearing) who would benefit from networking with other parents. Maybe these groups already exist, but we have struggled to find other parents in this situation.  We hope to have a group that would meet regularly to play, discuss childcare, practice sign language, discuss the IFSP process, and have a good time. 

Ear Infections and Tubes

A single ear infection can be a horrible experience, but imagine if it was recurring.  Martha writes:

My two year old has had six ear infections since Thanksgiving and my six month old has had four. We've tried a variety of things and we can't seem to get their ears to clear.  Our MD said one next possible step is tubes in their ears.  I hate the idea of surgery for my kids, but I also hate them always being sick. I'm wondering if other readers have had experiences with tubes that they would share.