My first hand personal expeiriences with gastroparesis.
Gastroparieis has been a diagonses for me for the past 5 years. When I started Mommies Quiet Place (This website) I was just diagonsed and bed rested because I would wake up in the middle of the night in major pains under my ribs and I would vomit and puke so badly I would chocke in my sleep. I seem to have mastered the diet plan of gasteroparies suggested by the dr who treated me was to eat soft bland mushy foods basically anything given in a old age home to older people I am okay with digetsting foods. Gasteroparies is an inablity to digest foods properly. I foods stay in my stomach for 3 hours at a time sometimes just sitting there not moving along the digestive track. I have over the years blogged about the treatments and such experiments from smoothies I had a popular smoothie that I posted I dubbed the poop smoothie till this day a lot of people try looking it up I see the search term for it on my website. I took it down because a lot of people like to take off with the topics I write about as ideas for their own and although flattering it sucks becuase I would much rather the post be shared, liked or commented not just talked about among others in a private chat group as I've found. I had a different name and discovered things being said and found out that people were jealous of my illness of how it effects me of how I cope and manage to come across as being together. I really am not put together, things overhwilmed me as much as the next person infact sometimes more so and it's a daily struggle sometimes to force myself out of bed but I do it daily at 6 am and movicate my mini me out the door to the shcool bus. I am loosing my teeth from the acid and it does not matter if I eat how the doctor suggest or not it just is a slow painful natural part of this process because I didn't have the insurance to deal with any of the issues that was minor because I was focued on the major issues that my daughter was having. Now at 36 I am taking care of me fully living life having a social life, doing things for myself and even taking the time to connect with support group out side of the house so I wasn't alone. it's nice to know you are not alone and that is why I keep this blog up not for my glory or to even get credit but it would be nice for others to give credit where it is due. So often clinics start to watch bella and I for years and follow up on us because we are a rare few who have Digeorge and other issues that go alone with things not typical to digeorge. My daughter has a mild form of cp and I have gastroparises. Together that makes life intersting. Today I went to the dentist and I have a tooth infection I am on antibotics and then next friday I will have my tooth pulled out. I have done all that I could but at this point it's a loss cause. I have been working out going to the gym and working on body building repairing my muscles in my legs I can leg press 115 pounds. My arms I can only lift 10 lb. I run 2 miles daily for the past 8 days and I haven't thrown up I also haven't had much time to eat excess foods. I eat dinner with family and then out the door I go to work out. I'm still trying to find that life balance house is falling apart all around me and soon Adam will start his new position and I need to sit and figure things out and how I am going to manage it all. Bella has been a handful she's turned into a teenager she will be 12 April 27 and she is getting rather mouthy some days at bed time and in the am. The trigger times of the day where not to many people see the adhd issues unless they come into the home and see it all in action. To the outside blogging world people become jealous I am married with a kid and have a happy normal existance in their minds. I learned not to explaim mysel fto anyone. People form the foundation assume that I don't have mamy issues and I let them think that if they want to know I have my website where I share about most of the stuff I have gone though. I am done with writing my book. It's in draft form and I'm just not sure if I want a publisher to get credit where it's not due or to sell it as a ebook and others get credit where it's not due by them selling copy's of it marking it up or down. Publishing is challanging and I'm not sure I'm ready to deal with that world. I think I might just stick to publishing on my blog. If I find the right publisher some day I will know if that happens but I never step out to do this blog to earn a dollar off the syndrome. Infact my readers have helped my daughter get to top earner for her school which I am so excitef for her they had her come up during march's reading month and she was so excited and a litle emotional. I love seeing her many emotions I'm reminded to be thankful for her spunk and zest for life and determination. With that she's inspired so many others. I have showned her that along with my husband. 14 years together and bella being 12 now I have been coming into contact with a lot of others from the past often reminded of how far I have come. Thanks so much for reading and the support.
In the 22q community some of our friends mention and talk about Asthma. April is Asthma awareness month Here are some tips if you have asthma if you have 22q and asthma you have to check your oxygen levels more so then the average person but you treat the symptoms just like anyone else with Asthma. With 22q we can't cure the deleteion on the 22q chromosome but we can treat symptoms. Bella and I are okay in this aspect neither of us have ASthma I'm sharing this becasue some of our friends with 22q do have Asthma
Easing the wheezing
child with asthma
Asthma is a lifelong problem, but it doesn’t have to hold you back. If you or your child has asthma, it may seem overwhelming. But some simple steps can help you take control of your asthma. With regular practice, these steps will become a part of your normal routine. Learn how to follow your asthma action plan, check your peak flow, know your asthma zones, and use your asthma diary with this helpful guide.
Active with asthma
If you battle exercise-induced asthma, you know how tough it can be to get regular exercise. But you can manage asthma in different ways so you can be physically active. Exercise-induced asthma is often not diagnosed, especially in children. If you or your child has symptoms, such as shortness of breath when you begin exercising and trouble breathing that goes away 20 to 30 minutes after exercise, be sure to tell your doctor. Using asthma-controlling medicine before your workout may help reduce symptoms, especially in cold, dry weather. Here are more tips that asthma experts recommend for easing your symptoms.
Asthma and your child
Asthma affects children in different ways. Some children have only occasional asthma attacks. Others have many asthma attacks that send them to the doctor often. If your child has asthma, the first thing to know is that treatment can control it. And, as a parent, you can do a lot to help your child learn to live a healthy and active life. Start by understanding the causes, symptoms, and treatments of asthma. Then find out what you can do to prevent your child’s asthma attacks. Here’s more information about asthma in children.
An asthma action plan
If you or your child has asthma, it is important to learn how to take care of yourself. One way to do this is to have a written asthma action plan. The plan usually includes which asthma medicine to take every day and how to treat an asthma attack. You’ll also learn to keep an asthma diary where you record the triggers that cause asthma symptoms. Following your plan can help you live the life you want and stay active with fewer problems from asthma. Start here with tips and strategies to help you develop and follow your action plan and review your plan with your doctor.
My goal is to feel good physically and mentally. The final number on the scale is not the most important to me. I want to lose weight and build muscle so that I'm at my best physical shape. It's more important that I feel good and not necessarily attain a number. Starting my day with gratitude sets me up to have a day filled with joy. Spring is here offically my crack head bird is back I have decided to go and get a gym membership and start working out again. I am at the highest weight I have been in while ever. I become comfy confident metally strong but had let myself go Physcially in the process. The Gasteroparies keeps flairing up and the doctors tell me loosing weight will help. I took my fitbit off for about a month I got so consumed with the numbers on the scale and the calories I was tracking. Now I am going to do it the correct way and move forward learning from mistakes. Get healthier so I can run with Bella. The 5k race this year I'm sitting in the stands because I just can't run like I used to. I want to get back into shape to do so but realistically that's not doubale in a few short months but I will get back to being physically healthy. At 36 I have been though a lot and I've learned life lessons. I have the support of hubby and some great friends who are going to nag me if I don't get out and go to the gym so this time I think with the encouragement I will finally loose the weight.
How Hypocalciuma(Low Calcium)affects us with 22q11.2 DiGeorge
My father has 22q, my 3 siblings have 22q I have 22q and my daughter has 22q all of us the one thing we have in common in our family is hypocalciuma. Seizures and tremmers happen when our calcium drops. When it drops to 3 I can tell and feel legarthic, faint and tremmer with hand cramps. We used to have daily then went to weekly then month now it's yearly for both bella and I. I can't say much about father or siblings as I don't live near by them but the treatment we had was intensse. This is the kind that no amount of foods or drinks will help it's the storage of calcium that drops for us. I hope that explains our issues with it. Hugs it's not easy at all I can't say much about father or siblings as I don't live near by them but the treatment we had was intensse. This is the kind that no amount of foods or drinks will help it's the storage of calcium that drops for us. I hope that explains our issues with it. it's not easy at all watching your little one get pokes from the calcium draws. When Bella was small we had to give her so many in a day then weekly then every other week and so on to now where we are at the get the test 1 time a year. Hypocalcemia (Low Level of Calcium in the Blood)
I did a search to explain it more details for you I know a lot of parents I mentor have asked me about the hypocalciuma as that is what all of us in our family who have 22q deal with
In hypocalcemia, the calcium level in blood is too low.
A low calcium level may result from a problem with the parathyroid glands, as well as from diet, kidney disorders, or certain drugs. Hypocalciuma is not always the case of having a parathroid issue. It is important to have the throid tested but it was not the case in our family ours was from kidney not processing the calcium breaing it down and melabsorbsion
(See also Overview of Electrolytes and Overview of Calcium's Role in the Body.)
Calcium is one of the body's electrolytes, which are minerals that carry an electric charge when dissolved in body fluids such as blood (but most of the body's calcium is uncharged). Although most of the body's calcium is stored in bones, some circulates in the blood. About 40% of the calcium in blood is attached (bound) to proteins in blood, mainly albumin. Protein-bound calcium acts as a reserve source of calcium for the cells but has no active function in the body. Only unbound calcium affects the body’s functions. Thus, hypocalcemia causes problems only when the level of unbound calcium is low. Unbound calcium has an electrical (ionic) charge, so it is also called ionized calcium. Causes
Hypocalcemia most commonly results when too much calcium is lost in urine or when not enough calcium is moved from bones into the blood. Causes of hypocalcemia include the following:
A low level of parathyroid hormone (hypoparathyroidism), as can occur when the parathyroid glands are damaged during thyroid gland surgery Lack of response to a normal level of parathyroid hormone (pseudohypoparathyroidism) No parathyroid glands at birth (for example, in DiGeorge syndrome) A low level of magnesium (hypomagnesemia), which reduces the activity of parathyroid hormone Vitamin D deficiency (due to inadequate consumption or inadequate exposure to sunlight) Kidney dysfunction, which results in more calcium excreted in urine and makes the kidneys less able to activate vitamin D Inadequate consumption of calcium Disorders that decrease calcium absorption Pancreatitis Certain drugs, including rifampin (an antibiotic), anticonvulsants (such as phenytoin and phenobarbital), bisphosphonates (such as alendronate, ibandronate, risedronate, and zoledronic acid), calcitonin, chloroquine, corticosteroids, and plicamycin
The calcium level in blood can be moderately low without causing any symptoms. If levels of calcium are low for long periods, people may develop dry scaly skin, brittle nails, and coarse hair. Muscle cramps involving the back and legs are common. Over time, hypocalcemia can affect the brain and cause neurologic or psychologic symptoms, such as confusion, memory loss, delirium, depression, and hallucinations. These symptoms disappear if the calcium level is restored.
An extremely low calcium level may cause tingling (often in the lips, tongue, fingers, and feet), muscle aches, spasms of the muscles in the throat (leading to difficulty breathing), stiffening and spasms of muscles (tetany), seizures, and abnormal heart rhythms. Diagnosis
Measurement of calcium level in the blood
Hypocalcemia is often detected by routine blood tests before symptoms become obvious. Doctors measure the total calcium level (which includes calcium bound to albumin) and the albumin level in blood to determine whether the level of unbound calcium is low.
Blood tests are done to evaluate kidney function and to measure magnesium, phosphate, parathyroid hormone, and vitamin D levels. Other substances in blood may be measured to help determine the cause. Treatment
Calcium supplements, given by mouth, are often all that is needed to treat hypocalcemia. If a cause is identified, treating the disorder causing hypocalcemia or changing drugs may restore the calcium level.
Once symptoms appear, calcium is usually given intravenously. Taking vitamin D supplements helps increase the absorption of calcium from the digestive tract.