I'm a mother of twins, RDA accredited Cloth Diaper Circle Leader, and an RN discussing parenting tips, green living, and products I love!
Yesterday we had a followup appointment at children’s hospital and we got good news! It looks like DS will not need surgery to correct his eye crossing! That is the good news. The bad news is that we had to see 3 doctors to get to where we are. That is why I feel so strongly about sharing our experience with other parents (through this blog and by word of mouth). I can’t stress enough how important it is to remember that WE ARE ALL HUMAN. Doctors are human too. Some doctors have more information than others. Some may have read a study that another missed. Go with your gut as a parent. If something concerns you, ask questions about it and get second (and third) opinions if necessary.
When I first took DS to the eye doctor about a year ago, I had noticed that his eye seemed to cross in when he was tired. When I took him to the local eye doctor he suggested that nothing was wrong with DS and that he “just had that kind of face” where it appeared that his eye crossed. (Its called pseudo strabismus.) This immediately felt wrong to me because I had never before thought his eye looked crossed and it was only at certain times. This led me to find another specialist an hour further south of our home. After she examined DS, (a much more thorough exam) she found crossing and prescribed him a mild prescription for glasses. After further exams, she determined that DS needed surgery to correct the muscles in his eyes. Because I was concerned about him having surgery, I wanted to make sure this was needed and got a third opinion at Children’s Hospital LA. After several exams, (one where we put Atropine drops in DS’ eyes for three days prior to his appointment) his doctor at CHLA wrote for an increase in his glasses prescription. This increase in prescription has corrected his crossing and he will not need surgery. It really does pay to be a worry wart momma sometimes!
I’m so happy that we have been able to spare DS from surgery. He has had enough hospital experience. He fell and broke his arm last summer (probably due to the crossing of his eyes and not having correct depth perception), has had SO MANY visits to eye doctors, and with this recent week of high fever and urinary tract infection, had to be catheterized twice for urine. He’s pretty much over doctor visits. (So am I!)
My point to this post is not for you to loose faith in doctors. We NEED doctors. We also need to trust ourselves because we are with our children more than they are. I should have immediately followed up that first eye doctor’s visit with a second opinion instead of waiting 6 months to “see if it goes away” like he suggested.
P.S. I mentioned to the eye Dr. at CHLA that I was very grateful and wrote a blog about our experience. She was very interested because she has had many parents get very nervous about using the Atropine drops in their child’s eyes. This is where you need to ask lots of questions. Don’t assume that because you went on the internet and looked up Atropine that you know what your doctor is talking about. There are different forms of medications and medicine in general can be very confusing because many things have similar names. (For example: The Mastoid Process is a bone at the base of the skull behind your ear and is named such because it is shaped like a breast. The Mastoid is a honeycomb of air cells in the ear. Mastitis is clogging of the milk ducts in the breast. There are many examples like this in anatomy/physiology.) So voice your concerns with your doctor and ask lots of questions. And, no, the Atropine eye drops are not the same form as the life saving Atropine used in resuscitation. Although Atropine is described as a poison, there are many definitions of what a poison is. In chemistry it means “a substance that retards a chemical reaction or destroys or inhibits the activity of a catalyst.” It’s derived from the belladonna plant and you will find belladonna in many children’s remedies for colic, teething, etc.
So if you are find yourself in a similar situation, ask your doctor about rechecking your child’s vision after Atropine drops before going in for surgery. Atropine drops are pretty “old school” so many doctors have gotten out of the habit of using them. 
I dealt with a mysterious fever once before, back with the kids got Roseola. That fever only lasted a few days before the slight Roseola rash appeared. THIS mysterious fever kept rearing it’s ugly head for 7 days. This may not seem like too much of a big deal right? Well this fever was most comfortable hanging out at 102 and liked to spike to 104.4. DS was not happy for the week and, because I wanted the fever to do it’s job and kill the infection it was fighting, I tried not to treat it until it was above 103 for the first several days and then pushed my limit up to 104 for the last few days. The problem with this method, was that when the fever was above 102, DS did not want to eat – AT ALL. It sucked. I tried to force oral Tylenol a couple times and he just wound up throwing it up. I wound up talking him into taking his Ibuprofen or Tylenol (and eventually antibiotics) by letting him know all the things he could do when he felt better. I talked to him about how he could go to Preschool and cooking class if he took his medicine and felt better. Find whatever it is that you kid lives for (tricycle etc.) and remind him/her about the fun things they are missing out on when they are sick. It really makes medication taking time much more peaceful.
Anyways, my husband and I were sick with worry over this fever. It started on a Sunday afternoon when DS woke from nap early crying (which is unusual for him). He was burning up with fever but had no other symptoms other than not wanting to eat. We cooled him off with washcloths, tepid baths (tepid because if the water is too cold it makes baby shiver causing an increase in temperature), and made sure to keep him supplied with any fluids he wanted to drink (water, milk or apple juice diluted in water).
We got into the doctor on Tuesday after the fever continued through Monday. It was unclear at that point, what was going on so the doc took a throat culture to make sure it wasn’t strep throat (it wasn’t) and asked that we come back if it continued. We returned to the office on Friday and DS seemed to be perking up slightly. (His feeling better was all a big hoax FYI) We worked really hard to collect two separate urine samples that Friday to come up with inconclusive results as to if it was a urinary tract infection. We were told that if the fever persisted on Saturday we should bring him into the office where they would catheterize DS for another urine sample and start antibiotics. Their office closes at noon on Saturday, and wouldn’t you know that his fever didn’t spike up again until 11:30 (while I was out of the house?). So we didn’t make it into the doctor’s office but I was sick of all this mystery illness stuff and took DS to the ER.
After a 5 hour visit that included a blood draw, two catheterizations, a chest X-ray, and multiple rectal temperatures, they determined that DS did in fact have a urinary tract infection (UTI), and prescribed antibiotics. After one dose of antibiotics he is SO MUCH perkier! The only problem is that UTIs for boys are VERY uncommon. Now, we are off to our doctor’s office for a follow up. It looks like he may have to have some further testing done to see why he got this infection in the first place – testing that is no fun testing. We shall see…. I’ll keep you updated!
Although I am knee deep in another toddler illness (DS has had a fever from 100-103.4 for the last 24 hours) and a migraine, I just can’t quite bring myself to feel sorry for myself. This weekend, while at my Southern California Mother of Twins Club convention, I met one of the many AMAZING and STRONG couples struggling daily with a child burdened with a terminal illness. At each convention and workshop the hosting club chooses a charity to raise funds or materials for. At this convention we raised money for the Peace, Love & Trevor Foundation. This foundation was started by Steve and Nicole Aldrian (parents of twins and member of SCMOTC) after they learned that the disease that will eventually take the life of their son Trevor, Krabbe Disease, is not only detectable with proper newborn screening, but it is preventable!
Per the Peace, Love & Trevor website: “Krabbe disease is a rare, inherited degenerative disorder of the central and peripheral nervous systems. It is characterized by the presence of globoid cells (cells that have more than one nucleus), the breakdown of the nerve’s protective myelin coating, and destruction of brain cells. Krabbe disease is one of a group of genetic disorders called the leukodystrophies. These disorders impair the growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers, and cause severe degeneration of mental and motor skills. Myelin, which lends its color to the “white matter” of the brain, is a complex substance made up of at least 10 different enzymes. Each of the leukodystrophies affects one (and only one) of these substances. Krabbe disease is caused by a deficiency of galactocerebrosidase, an essential enzyme for myelin metabolism. The disease most often affects infants, with onset before age six months, but can occur in adolescence or adulthood. Symptoms include irritability, unexplained fever, limb stiffness, seizures, feeding difficulties, vomiting, and slowing of mental and motor development. Other symptoms include muscle weakness, spasticity, deafness, and blindness.”
This illness is one of the most tragic illnesses I have learned about. Not only because it is fatal, but because, while the disease is robbing the child it has affected of their mobility, it causes excruciating pain. The Aldrian family had to endure Trevor screaming inconsolably for 5 months for 15 hours a day while Krabbe stole his body from him. I didn’t even know a body could endure that kind of constant pain. (You see now why I can’t feel bad about having a migraine and a 3 year old with a 103 temp, right?) I NEEDED to get this story out to all of you. I NEED for you to share this with others. We can do something about this!
As of right now New York is the ONLY state in the US that tests for Krabbe with newborn screening. This test costs $1-2 dollars. (It’s debatable). I find it hard to believe that there are rare diseases like this today that are NOT being screened for when they already have a screening test as well as treatments available! It makes no sense! If we want to talk strictly cold dollar facts it still doesn’t make sense not to test. Though there aren’t many cases, those few cases can cost millions of dollars in medical treatments, equipment, and resources. Prevention. Prevention is key in ALL disease. If we have the tools to prevent disease then we need to grab them up and put them to use.
Please join me in supporting the efforts of the Aldrian family. The funds they raise through the Peace, Love and Trevor Foundation go towards helping families in need with children suffering from this disease. These funds help make children suffering from this disease comfortable in their hours of need. Nicole shared that it takes 6 months to get a wheelchair. If we can help these children get a wheelchair before 1/4 of their life is over, we have made a huge impact. Keep up with the Peace, Love and Trevor Foundation to hear updates about progress the Aldrain family is making in their fight to get the Krabbe newborn screening test added in more states. They currently have a Bill in legislation! You can also show your support on their Facebook page HERE. Let’s help prevent the unnecessary suffering of any more “Trevors”!
This weekend I have been lucky enough to get away for a little momma recuperation. I am at the Southern California Mother of Twins Convention which meets up twice a year. At these events I am surrounded by gaggles of beautiful, inspiring moms who have had the experience of mothering more than one baby at a time. There is something satisfying and comforting about being around these women. We have all had similar experiences. I found it quite fateful that two of the moms sitting next to each other at my lunch table (coincidentally, as we are assigned to tables but not specific seats) introduced themselves and had a shared history of struggles with infertility and fertility treatments. This is what these clubs do for us. They sit you right next to the people who can guide you through your struggles and inspire you to not only make it through your children’s current STAGE OF TERROR, but they inspire you to be the best parent you can be. It’s more than a sisterhood. It’s a sisterhood of mothers.
This weekend we will enjoy meals together, fundraising “opportunity drawings” (legal raffles), libations, meetings and workshops. Our club gets quite a few mommas to go and we wind up having a grown up sleepover. (Chillax husbands, we only have one pillow fight…)
I was surprised to learn that, despite the rise of multiples joining our world, there has been a decline in club membership. I get it. It took me an entire year of struggle and tears to join my local club. I just couldn’t gather the energy to leave the house after putting the kids to bed, to attend a meeting. Looking back at that year, I WISH I had pushed myself that extra little bit and joined my club earlier. My fellow club members have become sisters, counselors, and sounding boards. Not to mention, they have included me on many a play date and the much needed mom’s night outs.
If you are a mother of multiples, I BEG you, reach out and find your local club. If there isn’t a local club, contact your national club (National Organization of Mothers of Twins Club) and ask them how to start a local chapter. Our club has moms with children ranging in age from their 30′s to newborns. I am so lucky and grateful to be a part of such a wonderful organization. I hope you find comfort in an organization like I have. Even if you don’t have twins, triplets, etc. check out your local mom’s club, it helps drive the “crazies” away!
If you are looking to save money and increase your health through eating better, I suggest you look into a local farming cooperative or Community Supported Agriculture program (CSA). Programs like these offer you a box (size varies) of fruits and vegetables on a regular schedule for you to either pick up or have delivered to your home. We have been using a service called Abundant Harvest Organics for several months now and are loving it. We decided to order a large box (which is about enough to fill 2 grocery bags) every week and split the order with my sister-in-law and her fiance.
I have learned SO much from our co-op. Not only do they send a newsletter with recipes, but they send veggies I would never have thought to buy at the store. This has forced me to learn how to use these veggies and has greatly increased our vegetable intake. At first I worried that I wouldn’t use all of our veggies and that they would go to waste. I have found that this is not something that occurs very often at all. If we get too many of one kind of veggie for us to use right away, I prep the veggie for cooking and then freeze it. Sometimes I’ll shred a bunch of carrot or parsnip and have it ready to add to any casserole or sauce for added nutrition. I have a stir fry mix in the freezer that is ready to go whenever we need a quick meal. I have used all of the large leafy veggies like kale, collard greens, and chard to make “kale chips”. I sliced up potatoes and froze them a while ago and made a wonderful casserole with these potato slices as the bottom layer just the other night. I freeze the spinach we get and use it for smoothies. The possibilities are endless.
Just last night DD & DS declared that snap peas are their favorite food in the world! While I was prepping them, I gave DD a couple to snack on. DS tried one raw and was not pleased. I decided to saute them in coconut oil and garlic. When we sat down to eat them with dinner, DS did not want to try them again. I showed him how you could open them to get the peas out just like edamame, and he was intrigued. When I asked him if he wanted one of my peas (just the inner pea) he said yes and then grinned and said “yummy!”. It was all over after that. He started by shucking the peas of their shells but then quickly decided that eating the entire pea was just as good. The loved the crunch of the peas and sautéing mellowed the flavor of the snap peas a bit. I love that a slight change in presentation of food can turn kids from refusing to digging in elbow deep.
I find myself going to the store with much less frequency since using the cooperative. I also find that getting a box of veggies inspires me to cook. It’s like a mini Christmas! Cooking used to feel like quite a chore (it still does occasionally) but having all these inspiring foods to pick up weekly makes me want to find recipes to use them. It’s fun exploring the world of cooking! Do a quick search to find a Co-op or CSA near you!
