New Things I'm Looking At

Since David started eating baby food, he's had trouble with his tummy. We've had him tested for Cystic Fibrosis and numerous other things, but never Celiac Disease. I have heard of it and looked into it a while back, but David's Immunoglobin results came back good, so I blew it off. Now, when I look back, some of the symptoms mirror the troubles has and had in the past. i called the endocrinologist and they said they did not test for this. So, I guess this is my next test to push for. We're still waiting to hear back from the neurologist to get the spinal mri scheduled. The neurologist didn't see anything wrong with David from a reflex our neuromuscular standpoint. He could see the scoliosis through David's back. He said that if the spinal mri came out okay, then we would not need to come back to see him unless there were problems. Here are some things that I found on celiacs that has me interested in in having him tested:
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What happens to people with celiac disease?

Celiac disease can cause different problems at different times:

• An infant with celiac disease may have abdominal pain and diarrhea (even bloody diarrhea), and may fail to grow and gain weight.
• A young child may have abdominal pain with nausea and lack of appetite, anemia (not enough iron in the blood), mouth sores and allergic dermatitis (skin rash).
• A child could be irritable, fretful, emotionally withdrawn or excessively dependent.
• In later stages, a child may become malnourished, with or without vomiting and diarrhea. This would cause the child to have a large tummy, thin thigh muscles and flat buttocks.
• Teenagers may hit puberty late and be short. Celiac disease might cause some hair loss (a condition called alopecia areata).
• Lactose intolerance (problem with foods like milk) is common in patients of all ages with celiac disease.
• Dermatitis herpetiformis (an itchy, blistery skin problem) is also common problem in people who have celiac disease.

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What happens in adults with celiac disease?

Adults who begin to be ill with celiac disease might have a general feeling of poor health, with fatigue, irritability and depression, even if they have few intestinal problems. One serious illness that often occurs is osteoporosis (loss of calcium from the bones). A symptom of osteoporosis may be nighttime bone pain. Also, about 5% of adults with celiac disease have anemia.

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Celiac disease sounds really serious! How can I control it?

Celiac disease is serious. Fortunately you can control celiac disease just by not eating any gluten. By following the right diet, you can reverse the damage caused by celiac disease and you'll feel better. But if you "cheat" on your diet, the damage will come back, even if you don't feel sick right away.

You'll have to explain your problem and the gluten-free diet to your family members and ask for their support and help. It will take time for you and your family to learn how to avoid gluten in your diet. You can contact one of the celiac support groups listed in the right column of this handout. These groups are excellent sources of information and advice. They'll help you find gluten-free foods and good recipes, and give you tips for successfully living with celiac disease.

Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

What are the symptoms of celiac disease?

Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.

Symptoms of celiac disease may include one or more of the following:

• gas
• recurring abdominal bloating and pain
• chronic diarrhea
• constipation
• pale, foul-smelling, or fatty stool
• weight loss/weight gain
• fatigue
• unexplained anemia (a low count of red blood cells causing fatigue)
• bone or joint pain
• osteoporosis, osteopenia
• behavioral changes
• tingling numbness in the legs (from nerve damage)
• muscle cramps
• seizures
• missed menstrual periods (often because of excessive weight loss)
• infertility, recurrent miscarriage
• delayed growth
• failure to thrive in infants
• pale sores inside the mouth, called aphthous ulcers
• tooth discoloration or loss of enamel
• itchy skin rash called dermatitis herpetiformis

A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. Anemia, delayed growth, and weight loss are signs of malnutrition: The body is just not getting enough nutrients. Malnutrition is a serious problem for children because they need adequate nutrition to develop properly. (See Complications.)

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Why are celiac disease symptoms so varied?

Researchers are studying the reasons celiac disease affects people differently. Some people develop symptoms as children, others as adults. Some people with celiac disease may not have symptoms, while others may not know their symptoms are from celiac disease. The undamaged part of their small intestine may not be able to absorb enough nutrients to prevent symptoms.

The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac disease appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.

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How is celiac disease diagnosed?

Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly underdiagnosed or misdiagnosed.

Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Autoantibodies are proteins that react against the body’s own molecules or tissues. To diagnose celiac disease, physicians will usually test blood to measure levels of

• Immunoglobulin A (IgA)
• anti-tissue transglutaminase (tTGA)
• IgA anti-endomysium antibodies (AEA)

Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.

If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine. Using instruments passed through the endoscope, the doctor then takes the sample.

Screening

Screening for celiac disease involves testing for the presence of antibodies in the blood in people without symptoms. Americans are not routinely screened for celiac disease. Testing for celiac-related antibodies in children less than 5 years old may not be reliable. However, since celiac disease is hereditary, family members, particularly first-degree relatives—meaning parents, siblings, or children of people who have been diagnosed—may wish to be tested for the disease. About 5 to 15 percent of an affected person’s first-degree relatives will also have the disease. About 3 to 8 percent of people with type 1 diabetes will have biopsy-confirmed celiac disease, and 5 to 10 percent of people with Down syndrome will be diagnosed with celiac disease.

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What is the treatment?

The only treatment for celiac disease is to follow a gluten-free diet. When a person is first diagnosed with celiac disease, the doctor usually will ask the person to work with a dietitian on a gluten-free diet plan. A dietitian is a health care professional who specializes in food and nutrition. Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means a person now has villi that can absorb nutrients from food into the bloodstream.

In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person’s age at diagnosis, some problems will not improve, such as delayed growth and tooth discoloration.

Some people with celiac disease show no improvement on the gluten-free diet. This condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve the best results.

Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to receive nutrients directly into their bloodstream through a vein, or intravenously. People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac disease.

The Gluten-free Diet

A gluten-free diet means not eating foods that contain wheat (including spelt, triticale, and kamut), rye, and barley. The foods and products made from these grains are also not allowed. In other words, a person with celiac disease should not eat most grain, pasta, cereal, and many processed foods. Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including gluten-free bread and pasta. For example, people with celiac disease can use potato, rice, soy, amaranth, quinoa, buckwheat, or bean flour instead of wheat flour. They can buy gluten-free bread, pasta, and other products from stores that carry organic foods, or order products from special food companies. Gluten-free products are increasingly available from regular stores.

Checking labels for “gluten free” is important since many corn and rice products are produced in factories that also manufacture wheat products. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers. Wheat and wheat products are often used as thickeners, stabilizers, and texture enhancers in foods.

“Plain” meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like. Recommending that people with celiac disease avoid oats is controversial because some people have been able to eat oats without having symptoms. Scientists are currently studying whether people with celiac disease can tolerate oats. Until the studies are complete, people with celiac disease should follow their physician’s or dietitian’s advice about eating oats. Examples of foods that are safe to eat and those that are not are provided in the table below.

The gluten-free diet is challenging. It requires a completely new approach to eating that affects a person’s entire life. Newly diagnosed people and their families may find support groups to be particularly helpful as they learn to adjust to a new way of life. People with celiac disease have to be extremely careful about what they buy for lunch at school or work, what they purchase at the grocery store, what they eat at restaurants or parties, or what they grab for a snack. Eating out can be a challenge. If a person with celiac disease is in doubt about a menu item, ask the waiter or chef about ingredients and preparation, or if a gluten-free menu is available.

Gluten is also used in some medications. One should check with the pharmacist to learn whether medications used contain gluten. Since gluten is also sometimes used as an additive in unexpected products, it is important to read all labels. If the ingredients are not listed on the product label, the manufacturer of the product should provide the list upon request. With practice, screening for gluten becomes second nature.

The Gluten-free Diet: Some Examples

In 2006, the American Dietetic Association updated its recommendations for a gluten-free diet. The following chart is based on the 2006 recommendations. This list is not complete, so people with celiac disease should discuss gluten-free food choices with a dietitian or physician who specializes in celiac disease. People with celiac disease should always read food ingredient lists carefully to make sure that the food does not contain gluten.

Allowed Foods
Amaranth Arrowroot Buckwheat Cassava Corn Flax Indian rice grass	Job’s tears Legumes Millet Nuts Potatoes Quinoa Rice	Sago Seeds Soy Sorghum Tapioca Wild Rice Yucca
Foods To Avoid
Wheat Including einkorn, emmer, spelt, kamut Wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein		Barley Rye Triticale (a cross between wheat and rye)
Other Wheat Products
Bromated flour Durum flour Enriched flour Farina	Graham flour Phosphated flour Plain flour	Self-rising flour Semolina White flour
Processed Foods That May Contain Wheat, Barley, or Rye*
Bouillon cubes Brown rice syrup Chips/potato chips Candy Cold cuts, hot dogs, salami, sausage Communion wafer	French fries Gravy Imitation fish Matzo Rice mixes Sauces	Seasoned tortilla chips Self-basting turkey Soups Soy sauce Vegetables in sauce
* Most of these foods can be found gluten-free. When in doubt, check with the food manufacturer.

Symptoms

Celiac disease was once thought of a disease with only GI symptoms. It is now recognized that the disease is a multi-symptom, multi-system (organ) disease. Celiac disease also does not routinely present with the 'textbook' symptoms that physicians learn. More often it presents with symptoms that can mimic other problems.
Most physicians recognize the classic symptoms of celiac disease : diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine. More often, symptoms can include constipation, constipation alternating with diarrhea, or premature osteoporosis. Overweight persons may also have undiagnosed celiac disease. Children may exhibit behavioral, learning or concentration problems, irritability, diarrhea, bloated abdomen, growth failure, dental enamel defects, or projectile vomiting. Others will have symptoms such as rheumatoid conditions, chronic anemia, chronic fatigue, weakness, migraine headaches, nerve problems such as tingling of hands or difficulty walking, or other conditions that are unexplained and/or do not respond to usual treatment. People may have one or more of the above symptoms. Patients are frequently misdiagnosed as having 'irritable bowel syndrome', 'spastic colon/bowel', or Crohn's disease'.

Diagnosis

Initial screening for CD is a blood test taken by your physician. The test can be referred to as a Celiac Panel or by the names of the individual tests. To provide the most accurate information,the blood test should include the following tests: anti-endomysial antibody (lgA EMA) and anti-gliadin antibody (lgA & IgG), and tissue transglutaminase (tTG IgA). These tests are very sensitive and specific for celiac disease. A gastroenterologist takes small intestine tissue biopsies if the results of the antibody test(s) are positive or he/she has a strong suspicion of CD. A biopsy showing damaged villi in the small intestine is the first half of the 'Gold Standard' to diagnosing CD. The second half of the 'Gold Standard' is improvement of health with the gluten-free diet.
It is possible, in some situations, to have normal blood tests and still have celiac disease.

Treatment

Strict adherence to a gluten-free diet for life is the only treatment currently available. This involves the elimination of wheat, rye, barley, and derivatives of these grains from your diet. Medication is not normally required, unless there is an accompanying condition, e.g. osteoporosis, dermatitis herpetiformis, etc. Thriving, showing improvement and return of health on the gluten-free diet is the second half of the 'gold standard' of being diagnosed with CD.

Questions to Ask Your Doctor:

• Should I take nutritional supplements?
• Could I have associated food intolerances?
• Where can I have a bone density study?
• What other concerns should I have?
• How can I find out about the diet?

Prognosis

Excellent, if you stay on the gluten-free diet. The small intestine will steadily heal and start absorbing the needed nutrients. You should start feeling better almost immediately; however, complete recovery may take several months to years.

Related Disorders

Dermatitis herpetiformis is also present in some people with celiac disease. Other autoimmune disorders that people with CD are at greater risk to develop include Addison' s disease, autoimmune chronic active hepatitis, Alopecia Areata, Graves' disease, insulin-dependent diabetes mellitus (type 1), myasthenia gravis, scleroderma, Sjogren's syndrome, lupus, and thyroid disease. Thyroid diseases and diabetes are the two most commonly associated diseases found with celiac disease. Thyroid disease is most commonly associated with DH.

Other conditions frequently seen in persons with gluten intolerance include anemia, early bone disease, Downs Syndrome, and fertility problems. Some persons with DH also have a higher incidence of other skin conditions, such as eczema.

While other connections have been suggested - such as with autism, MS, and mycosis fungoides, the research is either inconclusive, suggests a weak connection or offers no substantial connection.

As knowledge of gluten intolerance diseases expands and new findings become available, you can expect that the list of associated health problems and conditions will also change.

David's Black Eye

Yep, today's been another busy day. Every time Jason goes out of town, we seem to have some type of adventure, or misadventure. Today at nap time was the first time that I have been by myself to put David in his new bed for nap. He was asleep in the car after school when I put him to bed. He kicked and screamed and fussed. Finally, he just gave in and I was patting myself on the back at how easy the transition was going to be. Next, I heard his door opening and closing. I went in there and put him back to bed, kicking and screaming. I promised I would bring him 2 pretzels to keep him in bed and go to sleep. So, I did that and thought I was in the clear. I heard closet doors opening, drawers opening and toys being played with, but I didn't worry. I thought if I could get 30 minutes with him behind closed doors, I would make it through the day. Then I heard, crash...crash...crash....So, I ran into his room. He was on the floor with his legs up in the air and seemed to have the wind knocked out of him. He never cried. His toy organizer buckets were tumped in the floor with toys everywhere and his "work car" up against the toy organizer. He must have been climbing up there with his "car" and fell off and dropped all of the toys. He said he was fine, but wouldn't go back to bed. So, I negotiated with him and he got to lay on the couch. When he was dancing around and not resting, I got the spoon after him and it was then I noticed that his whole right eye from his eyebrow to his cheekbone was red. I asked him if it hurt and he said it did a little. He said he didn't fall on anything and hit his eye, but the toys hit him (I'm sure he was minding his own business when the toys flew out of the closet and knocked him out of his bed). Here is a picture of David right after the incident and his room afterwards.

Daniel's Report Card

Daniel got his report card yesterday. He made all A's and all 100% on the numeric grades. He even received comments that he was a good role model for others and that he was motivated to succeed and had a really good attitude. We are really proud of him. When I told him that I looked at his report card, he got upset. He thought only kids who got in trouble got a report card and he didn't know what he was getting in trouble about.

New Beds for the Boys

Daniel got his new bed Saturday and David got upgraded to Daniel's daybed. Daniel's new dresser just arrived today (in a box-we have to assemble it), so when Jason gets back into town, he'll have a fun project waiting for him. ;-)

Here are some pictures of their rooms.

Jake's Adoption Party

We had a fun Friday. The boys and I delivered dinner to Tom and Cindy and then came home and picked up Jason and we went over to Jake's house for a celebration party. Jake's adoption was official Friday. He was 2 in September. They've had him since birth, so they are so happy and relieved. Here are some pictures from Jake's house and then the boys at home later....

This is some of the information that I found on tethered cord syndrome:

Tethered cord

The symptoms of tethered cord can vary. One common problem is difficulty walking or weakness in the legs or feet which may cause the leg to drag or the feet to turn in or out. Pain in the back or legs is also common. Other changes include numbness or tingling, a change in bladder or bowel function such as wetness between catheterizations, scoliosis (curved spine), "tight" or stiff legs, tenderness over the spine or previous scar, and a decrease in activity. If your child develops symptoms such as these, they should be evaluated for the possibility of a tethered cord.

If a tethered cord is suspected, one or more tests may be necessary to confirm the diagnosis. An MRI scan is usually the first test to be ordered, because this is not invasive and can make the diagnosis. Other tests may be performed as well. If the MRI scan does not confirm the tethered cord for certain, a myelogram may be necessary. This is a special test that involves a spinal tap to put dye into the thecal sac. Plain x-rays and a CAT scan of the spine are taken after the myelogram to see how the dye flows around the spinal cord and nerves. Most children need general anesthesia for this test. Sonography is another test that is sometimes useful. It is a sound wave test that helps the doctors see how the spinal cord moves in the thecal sac.

If a tethered cord is present, surgery is then recommended. The operation involves removing some bone to get to the thecal sac and then separating the connection between the spinal cord and the thecal sac. After the operation, there is about a 15-20% chance that the tethered cord could develop again sometime in the future. This is why it is important to follow-up with your neurosurgeon. She or he may notice something while examining your child that you don''t see at home. Since the operation can only stop the progression of symptoms and not repair any damage that has occurred from the tethered cord, it is important that it be diagnosed and treated as early as possible.

Frequently asked questions

Why is a tethered cord a problem?

When the spinal cord is tethered it can cause damage to the spinal cord as the child moves or grows. Over time, blood vessels become stretched and the blood flow to the spinal cord decreases. If the spinal cord doesn''t receive enough blood, it can be permanently damaged. Over time, damage to the spinal cord can result in permanent weakness in the legs, problems with bowel and bladder function, changes in the ability to feel things in the legs (which may result in the development of pressure ulcers) and curvature of the spine. Children who are still growing are especially at risk of developing increased problems because of a tethered cord. That is why it is important to know what problems your child might develop that suggest a tethered cord.

Who gets tethered cords and why?

Tethered cord is most often found in children with spina bifida, myelomeningocele and lipomyelomeningocele. This is because these children have often had surgery in the past. In children with spina bifida, the spine, spinal cord and thecal sac did not develop normally. Even with surgery, the doctor cannot make it completely normal. Also, surgery causes some scarring which can make the spinal cord stick to the thecal sac over time. Other children can have a tethered spinal cord, but this is much less common.

The doctor said I have a tumor in my spine causing the tethered coral What does that mean?

Sometimes when the spinal cord does not develop normally, a piece of skin gets inside the spinal cord. Over time, the piece of skin can grow in size (it ''"sheds" just like skin outside does) and forms a dermoid or an epidermoid. Sometimes fat in the spinal cord is also called a tumor. These "tumors" are not cancer, but because it is tissue that does not belong in the spinal cord, it is called a tumor. These can often be removed at surgery, but they can recur.

Glossary

CAT scan: A special type of x-ray that shows the spinal column very well. When dye has been placed in the thecal sac with a myelogram, the two tests together help show a tethered cord.

Cauda equina: The collection of nerves below the end of the spinal cord which travel down the thecal sac to leave through the foremen to go to the muscles and skin.

Conus: The tip of the spinal cord. This part of the spinal cord supplies nerves to the bowel and bladder primarily.

Dermoid/Epidermoid: A piece of skin that gets caught below the skin and enlarges to form a tumor. This is not cancer, but tissue located in a place where it doesn''t belong, such as in the spinal cord.

Filum: This is a thin piece of tissue that comes from the end of the spinal cord and goes to the tail bone. Sometimes there is too much fat in the filum,or the filum is too tight. Both of these things can cause a tethered cord.

Hemangioma: A collection of small blood vesselsthat can appear like a red spot in the skin.

Lipomyelomeningocele: A special type of spine bifida where the conus is filled with fat and the fat goes outside the thecal sac to connect to fat below the skin.

MRI: A special type of study that uses a strong magnet to show doctors details about the spinal cord or other parts of the body.

Myelogram: A special type of x-ray study that involves a spinal tap to inject dye into the thecal sac. X-rays and CAT scans are usually taken after thespinal tap to better show the spinal cord and the nerve roots.

Myelomeningocele: A congenital abnormality where the spinal cord does not roll up into a tube the way that it normally does. The spinal cordstays on the surface of the skin. The nerves that are below the level where the spinal cord stopped rolling up do not work properly.

Sonogram: A sound wave study that helps show ifthe spinal cord1T`oves normally. This is like the sonogram or ultrasound that pregnant women have done.

Spina bifida: This literally means "open spine." It can be a mild form, where only the bones are open and the spinal cord is normal, or the spine can be open on the top of the skin.

Thecal sac (dural tube): This is the tube which holds the spinal cord and the spinal fluid.

Another article:

David's Doctor Visit

We went to see a Pediatric Orthopedic Specialist from Tulane yesterday. Jody let us know about him a while back and set us up an appointment through Dr. Bruni. His name is Dr. James Bennett and here is his website: http://orthodoc.aaos.org/bennett.

I also went to see David's regular Orthopedic Dr. on Monday so that I would have a point of comparison during the exact same time period. When David and I went on Monday, our doctor said that his spine had curved 3 more degrees, up to 28 degrees and that he didn't believe the pain David was having would get any worse and he hoped the spine curvature didn't get any worse and to come back in one year. I knew right then and there that I was done with him. I had hoped that when we saw Dr. Bennett that he would just confirm what our other dr. was saying and we would just stay where we were, but after he didn't want to see us back for a year, I figured we were done.

Dr. Bennett travels to Gulfport two days a month to take pediatric orthopedic appointments. We went to Gulfport Memorial Hospital to see him. Jason and I liked him immediately. He was so good with David. David never cried or fussed at all. David is usually good for doctors (he has seen enough of them), but he is always bad for our regular orthopedic doctor. We had x-rays done and Dr. Bennett, checked his toes, feet, legs, reflexes, pelvis...all kinds of things to check for tell-tale problems. Our other dr. never even touched David. He also felt his spine and looked at it and said that he couldn't even see scoliosis. Then he laid him across his knee and traced his spine. There was a section of his spine (where the scoliosis is) that was sunken in. He said that was not normal and was not good...that we would need to look at the x-rays to see what was going on.

We went into his office and he pulled David's x-rays up on the screen and looked at them. He said that he definitely has scoliosis. He compared the current ones to the records that I brought and said that the curvature was consistent in all of the pictures. The curve on the lower spine he said was just due to posture and him wiggling. He said that the differences in degrees of the x-rays in the same week were probably due to wiggling (he fought the x-ray technicians at the other dr.) and were statistically insignificant.

From his x-rays and calculations, David has a 25 degree curve to his spine. He definitely has scoliosis. From the research that I've done, he has moved from mild to moderate scoliosis. This degree curve in itself is not a huge deal, but because it was found when he was not even 2, it is significant and a "red flag" he said. From the things I told him about our other orthopedic dr., he defended him and said that he was probably just not used to treating pediatric patients. Our prior pediatrician referred us to him for pediatric care, so that is why we went there. Dr. Bennett had never even heard of him and he said that he knows all of the pediatric orthopedic doctors in the area. There is only one in Mobile at USA. Dr. Bennett though, said that it was a mistake for him to want to see us back in a year or even six months. The fact that the curve keeps progressing warrants visits earlier. He said waiting a year could cause maybe 24 more degrees in curve and could take us from being able to put him in a brace to definite surgery. I/we are so glad we went to see him. I just never had peace that we were doing the right thing by just waiting to see what happens. I just hate it took me so long to get his records together and go forward with this. :-(

We told Dr. Bennett that David's scoliosis was determined to be idiopathic, meaning that there was no known cause. He said that definitely could be the case and sometimes these cases of scoliosis will get better on their own, but we need to monitor it more closely than 6 months or longer. David has been complaining about pain in his lower back also. Dr. Bennett said that scoliosis does not cause pain. This being said, we needed to dig deeper to find a possible underlying cause. He said that infantile scoliosis is actually pretty rare, but one of the more common causes, especially children with pain is something called tethered cord syndrome. I am going to post some information on this syndrome in a separate post so this one won't be quite as long. A regular spinal cord floats in the spinal fluid. A tethered cord is attached to one area and does not float freely, causing problems and pain. This syndrome can cause scoliosis. It is treatable through surgery and a lot of times this "solves" the problem. It is important to correct this early before more damage is done. The damage typically is not reversable, but if it is corrected while the child is still young, it will save the child from more damage and pain. So, this is something for us to look into. You can diagnose this by a spinal mri. We have the orders to get this done and are visiting a neurologist here in town today in just a little while to get it scheduled in town. My aunt Ginny was able to call a pediatric neurologist last night and get us worked in for today. It usually takes 6 months to get an appointment, but thankfully he is willing to see us now. We saw another neurologist last year, that I can't bear to take David back to....all of the doctors that have been disappointments were referred by the pediatrician that we left. It's been wild.

So, basically, we're looking at idiopathic scoliosis with no known cause that may or may not progress that we have to watch and deal with if it gets much worse, or tethered cord syndrome, or other neurological diseases that could still be in play. We were tested for the most common form of muscular dystrophy last year and everything came back okay, but apparently there are other forms and diseases that we may need to test for by surgical nerve biopsy and EMG and muscle biopsy. That is why we are going through the neurologist to go further with the testing, so if anything needs to be done neurologically, we will be able to go forward with it. Dr. Bennett has agreed to have David as a patient and we will do all of our follow up orthopedic care with him, but he said that if we had the tests done (mri) through him, he would have to refer us to a New Orleans neurologist to proceed and that for this portion, we should stay local.

He gave us this site to look up: http://www.orthodoc.aaos.org/bennett He said to look for infantile idiopathic scoliosis mehta criteria non progressive. POSNA SRS.

So, that's what we know. I'm leaving in a few minutes to take David to the neurologist and see how we can get moving on all of this.

I'm sure this is rambled, but so am I, so this is what I could crank out quickly.

Keep little man in your prayers, please.

Big Boy Bed

Saturday, we went shopping for Daniel a new bed and dresser. I had pre-shopped and found a couple of things, but nothing that I was really in love with. We all went out Saturday and shopped all around town. Kids furniture is soo expensive. It is surprising that such small pieces of furniture cost so much. And then you can even get designer furniture, like Cinderella princess beds and Pirates of the Carribean bedroom sets. It's crazy. Our last stop was Home Place. We didn't go there at first, because I had looked online at their bedroom furniture and it was all so expensive. We went right before we went home and found what we hope is the perfect bed for Daniel. It is so cool! I think I am more excited about it than him. It is a loft bunk bed. It only has one bed, but it is up high and then built in, underneath, is a desk that is set up for a computer, and a bookcase comes with it. There is open area underneath too, where we can put some storage containers, or he can play. I am so excited! His room is so small and this helps solve the dilemma of how to fit a desk later and I was going to move out his bookcase too since it didn't match the new bed. This works out perfectly. It is made out of metal, which is not what we were looking for, but I think it will be fun for him. We found a dresser online that we think will work and that is on order too. The bed will be delivered Saturday. We are so excited!

Cookie

I forgot to mention that Cookie seems to be doing better. She definitely has glaucoma and has lost a good bit of vision in her left eye. The special drops that he gave us seem to be helping her. Her eye isn't protruding quite as much and she seems to be adjusting to not being able to see as well. She seems happy and not in pain, so we are relieved. She has to stay on the drops, but she is doing well. She's always been a tough little Cookie.

Lots going on

I haven't done well updating this blog. I had high hopes...but have gotten way behind. I still haven't unloaded the Christmas pictures from my camera card or even scanned our Santa pictures.

We had a wonderful holiday. Both of the boys had such a great time. They are both at such fun ages. They went to see Santa and David asked Santa for candy and Daniel asked for a Leapster and a digital camera. They both got tons of cool things. Daniel said that he didn't realize he had been so good.

We had lots of fun and are finally done getting the house back in shape after Christmas. We were sick at new years but everybody's doing better now. Now, we are getting ready for a big yard sale and then DISNEY WORLD the first week of February. It will be here before you know it. I will try to get Christmas pictures loaded and some other items up soon. ;0)