Tomorrow we get the results of my son's spinal MRI and repeat Ultrasound (autoimmune lab results next week). I find myself trying to look up specific things and then coming back to the big picture. I want to ask questions. I know all the symptoms, tests, medications and specialists we've seen. I want to make sure that the big picture is acknowledged and taken into consideration for the diagnosis. The big picture is:
SYMPTOMS:
-Swelling (mostly facial, some foot)
-Hives (non-itchy) / Lumps (belly button, foot) / Bruising (buttocks)
-Incontinence / Frequent constipation / diarrhea
-Recurrent Infections (mostly throat) / Cough / Asthma
-Stomach / Back pain
KNOWNS:
-Duplex Kidney = positive
-Angioedema = suspected
-Tethered Cord = suspected
-Cystic Fibrosis = negative
-Allergies (environmental / food) = negative
MEDICATIONS:
-Flonase (daily)
-Flovent (daily)
-Zyrtec (daily)
-Xopenex (as needed)
DOCTORS:
-Pediatrician (currently)
-Urology (currently)
-Allergy, Asthma, Immunology (currently)
-ENT (as needed)
-Pulmonology (previously)
-Infectious Disease (previously)
QUESTIONS:
-Could Angioedema be the reason for swollen kidney with fluid, bladder wall thickening and incontinence?
-Could a neurological issue be the reason for swelling and incontinence?
-What other possibilities should be considered?
-Should the autoimmune labs be considered?
TIPS:
I believe parents to be the child's biggest advocate and an integral part of the correct diagnosis. Big pictures are important and should be brought up to every doctor you see. Make copies of lab results or summaries from various doctors and share those in your appointments. Listen to your "gut"...don't be afraid to ask questions.
About Me
- Kristi
- I am a very proud mama of two children. I have done a lot of reading over the past 7 years and worked very closely with our wonderful pediatrician and nurse practitioner and have learned some useful medical information that I hope other parents will find helpful. I believe parents to be their child's best advocate. We know their "normal". I believe it is our responsibility to understand their medical conditions, symptoms, lab results and diagnosis so we can ask good questions and ultimately help in the good health of our children. **I am NOT a doctor nor have I had any medical training. I am simply sharing information helpful in my specific situation.** Welcome to "Pediatric Mama"!
Thursday, August 23, 2012
Wednesday, August 22, 2012
MRI
Magnetic resonance imaging (MRI) is a technique that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body.
Most MRI machines are large, tube-shaped magnets. When you lie inside an MRI machine, the magnetic field temporarily aligns the water molecules in your body. Radio waves cause these aligned particles to produce very faint signals, which are used to create cross-sectional MRI images — like slices in a loaf of bread.
The MRI machine can also be used to produce 3-D images that may be viewed from many different angles. (www.mayoclinic.com)
Our urologist ordered a full spinal MRI for my son mostly prompted by the suspicion of a Tethered Cord spine (see my previous post "Duplex Kidney" for more information on Tethered Cord). I always use the pediatric or children's imaging centers versus the general imaging centers. The children's imaging centers specialize in kids so they understand the fears, possible pain and parent concern and can usually do more to accommodate families. Especially if sedation is involved I choose the children's imaging center.
My son was given oral sedation (Vistaril and then Chloral Hydrate) in a private patient room with a bed, chairs and a TV / DVD player. He picked a movie he wanted to watch and fell asleep about 30 minutes after sedation (some kids don't fall asleep but become very sleepy and relaxed). My husband and I got to go in to the MRI room with him. It was a VERY long process. Even with sedation, he moved a few times so some parts had to be re-imaged. The nurse in the room with us figured out he was too hot and was moving in an attempt to get out from under the sheets and blankets. Once those were removed he was still for the remainder of the imaging. His eyes open a few times but he was so groggy the nurse would just tell him to close his eyes and go back to sleep and he would. Sedation is not required for an MRI but I highly recommend it even with the possible risks. I think to be strapped down to a table and rolled in to a tube with extremely loud noises is very scary even for adults. Not to mention the fact that you have to remain completely still or the images get blurred and are useless or have to be repeated. The amount of time the MRI takes depends on the images ordered. My son's MRI took about 1.5 hours but some are as short as 10 minutes.
After the MRI, my son was taken back to the private patient room for recovery. We also had some blood work that another doctor had ordered that I took with me to have done while we were there (I wanted to take advantage of the sedation so he wouldn't feel the worry and pain of a blood draw). After the draw, we waited for him to wake up and eat / drink a little before he could be released. The nurse checked vitals and waited to make sure the food / drink didn't make him nauseous. About 30 minutes later we were released. My son was very wobbly and a little cranky the rest of the evening. That was to be expected due to the sedation. If your child has sedation - do not let him/her walk alone. Either carry them or hold their hand when walking because they definitely have weakness and loss of balance several hours afterward. I made a bed for him on the floor next to my bed that evening so he wouldn't roll out of his bed or try to get up and fall and hurt myself while still under the effect of the sedation. This morning he woke up fine and totally back to normal.
We get the results of our MRI in 3 days and the results of our blood work next week.
TIPS:
1. Use a pediatric imaging center when possible.
2. Consider sedation.
3. If sedation is planned ask your child's other doctors if any labs are needed so the blood draw can be done while sedated - less scary / painful.
Wednesday, July 25, 2012
Lab Panels / Definitions
COMP METABOLIC PANEL
The Comprehensive Metabolic Panel (CMP) is a frequently ordered panel of tests that gives your doctor important information about the current status of your kidneys, liver, and electrolyte and acid/base balance as well as of your blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. The CMP is typically a group of 14 specific tests that have been approved, named, and assigned a CPT code (a Current Procedural Terminology number) as a panel by Medicare, although labs may adjust the number of tests up or down. Since the majority of insurance companies also use these names and CPT codes in their claim processing, this grouping of tests has become standardized throughout the United States.
The CMP includes:
C1 ESTERASE
How the Test is Performed
How to Prepare for the Test
How the Test Will Feel
Why the Test is Performed
Normal Results
What Abnormal Results Mean
Risks
C1 esterase inhibitor (C1-INH) is a protein found in the fluid part of your blood that controls C1, the first component of the complement system. The complement system is a group of proteins that move freely through your bloodstream. The proteins work with your immune system and play a role in the development of inflammation. There are nine major complement proteins. They are labeled C1 through C9.
The Comprehensive Metabolic Panel (CMP) is a frequently ordered panel of tests that gives your doctor important information about the current status of your kidneys, liver, and electrolyte and acid/base balance as well as of your blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. The CMP is typically a group of 14 specific tests that have been approved, named, and assigned a CPT code (a Current Procedural Terminology number) as a panel by Medicare, although labs may adjust the number of tests up or down. Since the majority of insurance companies also use these names and CPT codes in their claim processing, this grouping of tests has become standardized throughout the United States.
The CMP includes:
Both increased and decreased levels can be significant.
Proteins
Albumin, a small protein produced in the liver, is the major protein in serum. Total protein measures albumin as well as all other proteins in serum. Both increases and decreases in these test results can be significant.
Electrolytes
The concentrations of sodium and potassium are tightly regulated by the body as is the balance between the four molecules. Electrolyte (and acid-base) imbalances can be present with a wide variety of acute and chronic illnesses. Chloride and CO2 tests are rarely ordered by themselves.
Kidney Tests
BUN and creatinine are waste products filtered out of the blood by the kidneys. Increased concentrations in the blood may indicate a temporary or chronic decrease in kidney function. When not ordered as part of the CMP, they are still usually ordered together.
Liver Tests
- ALP (alkaline phosphatase)
- ALT (alanine amino transferase, also called SGPT)
- AST (aspartate amino transferase, also called SGOT)
- Bilirubin
ALP, ALT, and AST are enzymes found in the liver and other tissues. Bilirubin is a waste product produced by the liver as it breaks down and recycles aged red blood cells. All can be found in elevated concentrations in the blood with liver disease or dysfunction.
How is the sample collected for testing?
The CMP uses a tube of blood collected by inserting a needle into a vein in your arm. Ask your doctor whether you should be fasting for 10 to 12 hours prior to the blood draw. Depending on the reason for ordering the CMP, it may be drawn after fasting or on a random basis.
The CMP uses a tube of blood collected by inserting a needle into a vein in your arm. Ask your doctor whether you should be fasting for 10 to 12 hours prior to the blood draw. Depending on the reason for ordering the CMP, it may be drawn after fasting or on a random basis.
How is it used?
The CMP is used as a broad screening tool to evaluate organ function and check for conditions such as diabetes, liver disease, and kidney disease. The CMP may also be ordered to monitor known conditions, such as hypertension, and to monitor patients taking specific medications for any kidney- or liver-related side effects. If your doctor is interested in following two or more individual CMP components, he may order the entire CMP because it offers more information.
http://labtestsonline.org/understanding/analytes/cmp/tab/glanceThe CMP is used as a broad screening tool to evaluate organ function and check for conditions such as diabetes, liver disease, and kidney disease. The CMP may also be ordered to monitor known conditions, such as hypertension, and to monitor patients taking specific medications for any kidney- or liver-related side effects. If your doctor is interested in following two or more individual CMP components, he may order the entire CMP because it offers more information.
SED RATE
A sedimentation rate is common blood test that is used to detect and monitor inflammation in the body. The sedimentation rate is also called the erythrocyte sedimentation rate because it is a measure of the red blood cells (erythrocytes) sedimenting in a tube over a given period of time. Sedimentation rate is often abbreviated as sed rate or ESR. http://www.medicinenet.com/sedimentation_rate/article.htm
TSH (THYROID STIMULATING HORMONE)
The TSH test is often the test of choice for evaluating thyroid function and/or symptoms of hyperthyroidism orhypothyroidism. It is frequently ordered along with or preceding a T4 test. Other thyroid tests that may be ordered include aT3 test and thyroid antibodies (if autoimmune-related thyroid disease is suspected).
TSH testing is used to:
- Diagnose a thyroid disorder in a person with symptoms
- Screen newborns for an underactive thyroid
- Monitor thyroid replacement therapy in people with hypothyroidism
- Diagnose and monitor female infertility problems
- Help evaluate the function of the pituitary gland (occasionally)
- Screen adults for thyroid disorders, although expert opinions vary on who can benefit from screening and at what age to begin
When is it ordered?
The doctor may order a TSH test when someone has symptoms of hyperthyroidism or hypothyroidism and/or when a person has an enlarged thyroid gland.
- Increased heart rate
- Anxiety
- Weight loss
- Difficulty sleeping
- Tremors in the hands
- Weakness
- Diarrhea (sometimes)
- Light sensitivity, visual disturbances
- The eyes may be affected: puffiness around the eyes, dryness, irritation, and, in some cases, bulging of the eyes.
Symptoms of hypothyroidism may include:
- Weight gain
- Dry skin
- Constipation
- Cold intolerance
- Puffy skin
- Hair loss
- Fatigue
- Menstrual irregularity in women
It may be ordered at regular intervals to monitor the effectiveness of treatment when someone is being treated for a knownthyroid disorder.
TSH screening is routinely performed in the United States on newborns as part of each state's newborn screening program. The American Thyroid Association recommends that adults older than age 35 be screened for thyroid disease with a TSH test every five years, although other organizations, such as the U.S. Preventive Services Task Force, challenge this recommendation. Several organizations recommend instead screening women over 50 or those at high risk for thyroid disorders, such as pregnant and postpartum women.
What does the test result mean?
A high TSH result often means an underactive thyroid gland that is not responding adequately to the stimulation of TSH due to some type of acute or chronic thyroid dysfunction. Rarely, a high TSH result can indicate a problem with the pituitary gland, such as a tumor producing unregulated levels of TSH. A high TSH value can also occur when someone with a known thyroid disorder or who has had their thyroid gland removed is receiving too little thyroid hormone medication.
A low TSH result can indicate an overactive thyroid gland (hyperthyroidism) or excessive amounts of thyroid hormone medication in those who are being treated for an underactive (or removed) thyroid gland. Rarely, a low TSH result may indicate damage to the pituitary gland that prevents it from producing adequate amounts of TSH.
Whether high or low, an abnormal TSH indicates an excess or deficiency in the amount of thyroid hormone available to the body, but it does not indicate the reason why. An abnormal TSH test result is usually followed by additional testing to investigate the cause of the increase or decrease.
The following table summarizes test results and their potential meaning.
| TSH | T4 | T3 | INTERPRETATION |
|---|---|---|---|
| High | Normal | Normal | Mild (subclinical) hypothyroidism |
| High | Low | Low or normal | Hypothyroidism |
| Low | Normal | Normal | Mild (subclinical) hyperthyroidism |
| Low | High or normal | High or normal | Hyperthyroidism |
| Low | Low or normal | Low or normal | Non-thyroidal illness; rare pituitary (secondary) hypothyroidism |
How the Test is Performed
How to Prepare for the Test
How the Test Will Feel
Why the Test is Performed
Normal Results
What Abnormal Results Mean
Risks
- Excessive bleeding
- Fainting or feeling light-headed
- Hematoma (blood accumulating under the skin)
- Infection (a slight risk any time the skin is broken)
C1 esterase inhibitor (C1-INH) is a protein found in the fluid part of your blood that controls C1, the first component of the complement system. The complement system is a group of proteins that move freely through your bloodstream. The proteins work with your immune system and play a role in the development of inflammation. There are nine major complement proteins. They are labeled C1 through C9.
Complement factors are very important in testing for autoimmune diseases, especially systemic lupus erythematosus. C1-INH is an important marker for hereditary angioedema, and it also plays a role in other diseases.
This article discusses the test that is done to measures the amount of C1-INH in your blood.
No special preparation is needed.
When the needle is inserted to draw blood, some people feel moderate pain, while others feel only a prick or stinging sensation. Afterward, there may be some throbbing.
Your doctor may order this test if you have signs of hereditary angioedema. Hereditary angioedema is caused by low levels of C1-INH.
C1 esterase inhibitor: 16 to 33 milligrams per deciliter (mg/dL).
Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.
The examples above show the common measurements for results for these tests. Some laboratories use different measurements or may test different specimens.
Abnormal results may be due to certain types of angioedema.
Veins and arteries vary in size from one patient to another and from one side of the body to the other. Obtaining blood from some people may be more difficult than from others.
Other risks associated with having blood drawn are slight but may include:
C1 inhibiting factor; C1-INH
C4 LEVEL
Complement component 4 is a blood test that measures the activity of a certain protein that is part of the complement system. The complement system is a group of proteins that move freely through your bloodstream. The proteins work with your immune system and play a role in the development of inflammation.
There are nine major complement proteins. They are labeled C1 through C9. This test measures C4.
See also:
How the Test is Performed
Blood is drawn from a vein, usually from the inside of the elbow or the back of the hand. The site is cleaned with germ-killing medicine (antiseptic). The health care provider wraps an elastic band around the upper arm to apply pressure to the area and make the vein swell with blood.
Next, the health care provider gently inserts a needle into the vein. The blood collects into an airtight vial or tube attached to the needle. The elastic band is removed from your arm.
Once the blood has been collected, the needle is removed, and the puncture site is covered to stop any bleeding.
In infants or young children, a sharp tool called a lancet may be used to puncture the skin and make it bleed. The blood collects into a small glass tube called a pipette, or onto a slide or test strip. A bandage may be placed over the area if there is any bleeding.
The sample is then sent to the laboratory where the amount of C4 is measured.
How to Prepare for the Test
No special preparation is needed.
How the Test Will Feel
When the needle is inserted to draw blood, some people feel moderate pain, while others feel only a prick or stinging sensation. Afterward, there may be some throbbing.
If your child is to have this test performed it may be helpful to explain how the test will feel, and even practice or demonstrate on a doll. The more familiar your child is with what will happen to them, and the purpose for the procedure, the less anxiety he or she will feel.
Why the Test is Performed
C3 and C4 are the most commonly measured complement components. Complement activity may be measured to determine how severe a disease is or if treatment is working.
A complement test may be used to monitor patients with an autoimmune disorder. For example, patients with active lupus erythematosus may have lower-than-normal levels of the complement proteins C3 and C4.
Complement activity varies throughout the body. For example, in patients with rheumatoid arthritis, complement activity may be normal or higher-than-normal in the blood, but much lower-than-normal in the joint fluid.
Normal Results
- Males: 12 to 72 mg/dL
- Females: 13 to 75 mg/dL
Note: mg/dL = milligrams per deciliter
Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.
The examples above show the common measurements for results for these tests. Some laboratories use different measurements or may test different specimens.
What Abnormal Results Mean
Increased complement activity may be seen in:
- Cancer
- Ulcerative colitis
Decreased complement activity may be seen in:
- Bacterial infections (especially Neisseria)
- Cirrhosis
- Glomerulonephritis
- Hepatitis
- Hereditary angioedema
- Kidney transplant rejection
- Lupus nephritis
- Malnutrition
- Systemic lupus erythematosus
Alternative Names
C4
Urticaria related to Angioedema
My son woke up with a large rash on the outside of his right thigh and across his lower back / buttocks. Diagnosis was urticaria (hives) related to Angioedema. Hives can occur when histamine and other inflammatory chemicals are released from white blood cells (mast cells) in the skin. These white blood cells are the same ones involved in allergic reactions in the nose and eyes (hayfever).
Mast cells are a part of the immune system and can be found throughout the body. Inside the mast cell are tiny granules containing different chemicals that cause inflammation. Related to skin diseases, mast cells play an important role in hives and facial flushing caused by mastocytosis. A cause for chronic urticaria is found in less than 5% of cases. Topical therapies for hives are available but generally ineffective. Allergic reactions are not known to cause chronic urticaria and allergy tests are usually not helpful. Hives have various looks. The ones my son has look similar to those in the image found online below. He has been taking 1 tsp (5mL) Zyrtec daily for the past few weeks for the swelling and due to this recent hives breakout we are taking 2 tsp (10mL) daily (1 tsp in the morning, 1 tsp at night).
There are other rashes that may look like hives but the fact that they remain stable and do not resolve within 24 hours is helpful in distinguishing them from hives. Such rashes may need to have a small specimen of skin removed and examined under the microscope (biopsy) to accurately determine the nature of the skin disease.
TIP: Take a picture of the rash to show the doctor. If the appearance changes take multiple pictures. It can help in diagnosis.
Saturday, July 21, 2012
Duplex Kidney
I took my son to the Urologist for daytime and night time wetting concerns only to find out he has Kidney Duplication or "Duplex Kidneys". It looks on the ultrasound like a kidney within a kidney but in reality is just two tubes (ureters - tubes that carry urine from the kidneys to the bladder) instead of just one coming from the kidney. His right kidney is perfect, his left kidney is the Duplex Kidney. (See the right side of the image below). A duplex collecting system can result in frequent urinary tract infections, backflow of urine into the kidney and sometimes kidney damage.
We had an ultrasound done today that detected this as well as bladder wall thickening and a little fluid in the kidney. We are scheduled to have an MRI (magnetic resonance imaging - a non-invasive scan) probably next week. The MRI is to determine if he has "tethered cord" which is a condition where the spinal cord becomes stretched and damaged due to tissue that doesn't belong there. It can cause urination control issues. It can also cause nerve damage if not treated. (See image below.) The doctor suspected this when she noticed a crooked crease at the top of his buttocks.
The fluid in the kidney can be a result of reflux (VUR - vesicoureteral reflux - an abnormal flow of urine from the bladder into the ureters or kidneys) but because he hasn't had urinary tract or kidney infections the doctors aren't worried at this point. If concern develops a VCUG (voiding cystourethrogram - an x-ray examination of the bladder and lower urinary tract that uses a special form of x-ray called fluoroscopy; a catheter is used to fill the bladder with a liquid contrast to see if it flows backwards into the kidneys confirming VUR) would be ordered for further analysis and treatment.
The duplex kidney, thickened bladder wall and possible tethered cord can all contribute to daytime / night time wetting. He can't help the "leaking" or accidents. For now we are using a timer watch set for every 2 hours as a reminder to potty and Miralax to make sure stools can easily move out of the body. If after the watch and Miralax he still has problems there is medication he can take to help relax the bladder wall. We'll wait for the MRI results to decide "next steps". Next steps can be do nothing or do surgery or something in between depending on severity.
TIPS: If you're child can't stay dry try a "potty watch" (recommended reminder set for every 2 hours; www.pottymd.com makes a "potty watch" that looks like a regular watch so it's not embarrassing for an older child to wear) and daily dose (usually 1/4 - 1/2 cap) of Miralax. Sometimes constipation is the cause of leaks and accidents. If there are still concerns see a pediatric urologist.
Angioedema
A couple of weeks ago my 4 year old son woke up with an extremely swollen face. The pediatrician thought it was a bug bite (despite the fact that there was no bite / puncture mark) or an allergy (insect or food). We were given an Epi-Pen in case of breathing emergency, prescribed a daily dose of Zyrtec and told to re-visit our allergist. The allergist did not think allergy testing for insects or food was necessary. His diagnosis was Angioedema.
Angioedema (giant swelling) is large, sometimes distorting, swelling affecting the eyelids, lips, tongue or other parts of the body. Very rarely Angioedema affects the throat, but when it does, it may be life threatening. Giant swelling may occur with or without hives. A very small percentage of these cases have an inherited or acquired deficiency of a blood protein that normally limits swelling. When mast cells are reactive, scratching the skin can result in further release of histamine, making the problem worse. Scratching induced hives (demographism or skin writing) are common. When the precise cause of hives/giant swelling is identified, recurrence can be prevented by avoiding teh stimulus. When no cause is found or avoidance is not effective or feasible, control of hives/giant swelling can often be accomplished with use of medications, even in chronic cases.
My son had 6 episodes in 10 days (2 were extreme facial swelling - the others were single eye, side of lip, side of face / ear and one foot). Since taking Zyrtec daily he hasn't had another extreme swell.
TIP: Keep a log of time of day, frequency / duration of the swelling. Consider food, insect bites, new detergents, materials, etc. Log treatment used (ice pack, antihistamine, creams, etc).
TIP: Keep a log of time of day, frequency / duration of the swelling. Consider food, insect bites, new detergents, materials, etc. Log treatment used (ice pack, antihistamine, creams, etc).
Sunday, May 20, 2012
Tubes Again...Gifted Therapy
On April 30 (2 months after the tonsillectomy and 2nd set of ear tubes) we were back in the hospital for a re-do of the right ear tube. Abby had significant bleeding post surgery in February and the blood had clotted, blocked the ear tube and caused it to slide out and get stuck in the clot. While in there for the re-do per our Pediatrician and ENT had her upper lip frenulum clipped and her tongue frenulum re-clipped. As a newborn her tongue frenulum was so tight that in caused feeding issues and doctors were afraid of speech issues developing. Since she was already going to be under anesthesia we decided to take care of those concerns. Both required dissolvable stitches and she seems to be healing as expected.
The hard part is she is still sick often. We knew that the February and April procedures weren't going to be a "quick fix" but I hate that she hasn't felt any better. We started the immunotherapy in February and she is handling the weekly shots beautifully. The first two visits were difficult for her and she cried hard. She has to get a shot in each arm every week. But from then on she has walked in like a pro and handed over her arms. I feel bad that this is "normal" for her and that she has to be so brave at age 6 but I've realized that there are many kids that this is normal for and many kids who have to go through so much more. We haven't noticed the benefits of the surgeries and shots yet but hope to in the next 6 months.
In addition to my daughters minor immunodeficiency she is also a gifted child...and that can be a bad combo. Her intelligence has developed faster than her emotional control. She feels like she is "sick all the time" and that her "body hates her" as she tells me. Her body has to work so hard to keep her well that it overreacts and fights itself causing her to experience chronic hives. It has also contributed to her sensory hypersensitivity. Things like taking a shower for example sometimes actually hurt her skin. She will step in to the shower and immediately start itching like mad before any soaps / shampoos are used. As a result, she scratches and her skin develops welts.
As a gifted child...her questions are deep and the answers are hard to understand (and hard to come up with). That leads to frustration for her. Frustration leads to emotional meltdowns. We are trying to help her not be so frustrated and learn to control her emotions a little better and learn to be a little more flexible when things don't go as planned. She has started seeing a therapist weekly to help her deal with her chronic illness and her giftedness so she is not so anxious and frustrated. In addition, I am reading "Smart but Scattered" by Dawson Guare and "The Explosive Child" by Ross W. Green. Both have been very helpful...gives me insight to who I am and who she is and how I can better relate to her and support her in a more positive way.
There are things I know that I wish I didn't have to know. I know about immunoglobulin classes....I know the difference between IgG, IgA, IgE and IgM as it relates to the immune system. I know what it's like to get your children tested (twice) for Cystic Fibrosis, Lupus, Rheumatoid Arthritis and Liver Disease (to name a few). I know about Executive Skills and how the brain develops. I am learning how to balance empathy for the illnesses and frustration with individual empowerment to raise responsible and respectful children. That being said...I'm so glad I know about those things. I'm glad I took the time to research and ask questions. I'm glad I interviewed doctors and found the best fit for our situation. I'm glad I got laid off and had the opportunity to focus strictly on my family. And most of all I'm glad I have my daughter...she and my son are the best things that ever happened to me and it's my privilege to be their biggest advocate.
I was born to be their mama!
The hard part is she is still sick often. We knew that the February and April procedures weren't going to be a "quick fix" but I hate that she hasn't felt any better. We started the immunotherapy in February and she is handling the weekly shots beautifully. The first two visits were difficult for her and she cried hard. She has to get a shot in each arm every week. But from then on she has walked in like a pro and handed over her arms. I feel bad that this is "normal" for her and that she has to be so brave at age 6 but I've realized that there are many kids that this is normal for and many kids who have to go through so much more. We haven't noticed the benefits of the surgeries and shots yet but hope to in the next 6 months.
In addition to my daughters minor immunodeficiency she is also a gifted child...and that can be a bad combo. Her intelligence has developed faster than her emotional control. She feels like she is "sick all the time" and that her "body hates her" as she tells me. Her body has to work so hard to keep her well that it overreacts and fights itself causing her to experience chronic hives. It has also contributed to her sensory hypersensitivity. Things like taking a shower for example sometimes actually hurt her skin. She will step in to the shower and immediately start itching like mad before any soaps / shampoos are used. As a result, she scratches and her skin develops welts.
As a gifted child...her questions are deep and the answers are hard to understand (and hard to come up with). That leads to frustration for her. Frustration leads to emotional meltdowns. We are trying to help her not be so frustrated and learn to control her emotions a little better and learn to be a little more flexible when things don't go as planned. She has started seeing a therapist weekly to help her deal with her chronic illness and her giftedness so she is not so anxious and frustrated. In addition, I am reading "Smart but Scattered" by Dawson Guare and "The Explosive Child" by Ross W. Green. Both have been very helpful...gives me insight to who I am and who she is and how I can better relate to her and support her in a more positive way.
There are things I know that I wish I didn't have to know. I know about immunoglobulin classes....I know the difference between IgG, IgA, IgE and IgM as it relates to the immune system. I know what it's like to get your children tested (twice) for Cystic Fibrosis, Lupus, Rheumatoid Arthritis and Liver Disease (to name a few). I know about Executive Skills and how the brain develops. I am learning how to balance empathy for the illnesses and frustration with individual empowerment to raise responsible and respectful children. That being said...I'm so glad I know about those things. I'm glad I took the time to research and ask questions. I'm glad I interviewed doctors and found the best fit for our situation. I'm glad I got laid off and had the opportunity to focus strictly on my family. And most of all I'm glad I have my daughter...she and my son are the best things that ever happened to me and it's my privilege to be their biggest advocate.
I was born to be their mama!
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