Gastroparesis

My first hand personal expeiriences with gastroparesis.

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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.

Asthma

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.

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Weight loss journey

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.

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hypocalciuma and DiGeorge 22q11.2 deletion syndrome

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

Symptoms

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

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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

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.

My why on why I blog

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A lot of fears come to a parent when they hear the words there is something wrong with your child and it’s a genetic piece of dna that is missing on the 22 chromosome.

An estimated 180,000 people are born each year with 22q11.2-deletion syndrome and 120,000 of them are never diagnosed.

This is a genetic condition" (second common to Downs) "with over 180 possible symptoms which could include heart, lungs, kidney, failure to thrive, failure to grow, feeding issues, nasal reflex, VPI insufficiency, speech or lack thereof, developmental issues, many issues that are misdiagnosed as Autism, ADHD, behavior, significant motor and learning delays, apraxia, GI issues, orthopedic issues, VCFS, folded ears, low set ears, small mouth and jaw, to name just a FEW. My daughter has many of these symptoms. They are however mild. I also have many of these symptoms I’m 36 and appear much younger looking. I suppose the fountain youth can be found in the 22q deletion gene"It is as common as Down Syndrome, so why have you never heard of it?! Google it! Let's change this by spreading awareness!" (Wikipedia): "Velopharyngeal insufficiency (VPI) is a failure of the body's ability to temporarily close the communication between the nasal cavity and the mouth, because of an anatomic dysfunction of the soft palate or of the lateral or posterior wall of the pharynx.The effect of such a dysfunction leads to functional problems with speech (hypernasality), eating (chewing and swallowing), and breathing.[1] This gap can be treated surgically, although the choice of operational technique is still controversial." VPI surgery is a common issue among those with 22q I take Bella to U of M here in Michigan at the Mott’s Children hospital since she was in kindergarten we see a team of specialist and doctors we have to travel for our specialist Ann Arbor, Grand Rapids (Mary Free Bed) and Kalamazoo, Michigan what dose not help is the doctors up and leaving changing positions, Insurance coverage issues and the fight to keep my daughter school grade up while she misses school because of these doctor visits. Yet even the school professionals do not under stand what 22q is because while medicated Bella looks and appears like all of the other kids. Bella even sounds like them as well. The school does not understand why we can’t book an appointment for after 5pm while it’s because your family doctor down the street probably has yet to hear about what Di George syndrome or 22q is and spreading awareness outside of the 22q community is my passion.

If you have a doctor who does not understand what digeorge syndrome 22q is wouldn’t you travel to get the best care for your child?

My daughter is main streem with an Iep and is going into middle school next year we moved her from a level 1 to a level 2 and that took a while to get the school to finally understand all that Bella has going on. Bella school journey and doctors visits were all on a blog I used to run with this same domain but I am taking those and creating a book to help other’s cope with the complex nature of all that is 22q Di-George. Not only does my daughter have 22q but I do as well. My family is one of the rare family’s where all of us were tested for Digeorge. My father has 22q, my 3 siblings have 22q. One of my siblings passed from complications. I grew up in Toronto, Ontario where tests were not as costly so it was easier for us to get tests results there vs having to pay the nearly 5000 for a test here thankfully Bella insurance covered it.

Knowledge is hope awareness is key

I decided to create a safe place back before I got married with a few friends I connected with who also have 22q and children with 22q we wanted a place where others can connect and find each other it first started out as a social group on Facebook for support. I then had Bella my life turned into something more. I knew my purpose was to be an advocate for the unborn to get newborn screenings in place. I discovered that after I had my daughter in Grand Rapids Michigan and the medical team and their students were asking me questions observing me like I was this genetic freak of nature. I was born with this yet it’s almost invisible you would just think I look very young for my age.

I took a break off and on breaks from social media because moms of 22q were spending time bickering over a name over the terms that people could and could not share their story and who and who wasn’t in the in crowd. I got tired of the drama and wanted a place of my own on the internet but then so did so many others.

As an adult with Digeorge and as a Mom who has a child with Digeorge I also needed a place where I felt like I could get that support which is vital really. However it wasn’t out there for a women with 22q and a child with 22q as well.

I created this website out of passion love and the strong will determination that has kept me going all these years I am in my late 30’s and put that towards helping just one other person know they too are not alone be it adult, mom, adoptive mom, foster mom or dads.

There needed to be an all inclusive place that just isn’t out there for those of us who have 22q.

I started writing out of fear hopelessness and on bed rest while I recovered from a Mallory wise tear and bouts of gasteroparises flair ups that I didn’t know how to manage at the time.

I also had a place to brain dump about the multiple doctor visits my daughter was having and continues to have.

I wanted to share her journey in-case one day I forget how for our family has come.

I had high risk pregnancy and complications at Bella’s birth that led her to have mild form of cerebral palsy.

I am a rare family in terms that the uncommon genetic disorder we have my father and 3 other siblings have as well as Bella and I so 5 of us with 22q. One sibling past away when he was very young. I have seen the good bad and ulgly. It’s shaken my faith. I’ve been to the bottom and back to the top only to back to the bottom and some place in between.

One day I decided to journal out my feelings thoughts and experiences I just never stopped.

I spend a lot of my free time working on my website from scratch, particularly photography/videography, social media, and blog posts.

I do have my husband help with the securing of my website after the word press hack I had.

I am building my platform from scratch as well this year (2019) I started blogging back in 2013 but I was blogging for the wrong reasons and my message was getting jumbled.

So in 2014 I decided to launch Mommies Quiet Place I spend a lot of time effort and money into my domain and I hope to one day publish a book with my story

My story is about how one family copes with 22q11.2 deletion syndrome (DiGeorge) or 22q for short and multiple health issues that came with the genetic disorder.

I love connecting with other family's to share—the good, the bad and the unbelievably messy. My husband says” Your the cross between the artsy high tech mom and the hot mess mom you meet next door.” remind me to thank him. We are celebrating our 14 year anniversary together.

Read about:

Why are the kids and hubby's are so messy? how I manage my home. Life skills tips and tricks.

What is 22q?

A common comment I often get is that I look much younger then my real age.

Spoiler: My answer is “That’s because it’s in my genes. I have 22q deletion syndrome.”

My first hand personal experience of having 22q myself as I raised the child my hubby and I created.

Read on for insight and advice from my personal first-hand experience and connect with other moms who've been in the trenches.

Here are some of my passions:

chocolate, coffee☕ and Books 📚

enter contest/ giveaways

hunt for freebies

working on writing and someday publishing a book or two

attending conferences and workshops

Worshiping our creator.

I won’t preach at you though ever. I do write devotionals, if you are interested. I write for parents of kids with special needs.

This blog has been up since 2013 and I have helped many other people who have children with 22q.

I have also help guide young 22q adults start their blogs to help encourage them to share their stories.

Knowledge is hope awareness is ke