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All About My Family

Oct 19, 2009 - 2 comments

I don't know much about my dad or his family because of his increasing mental disabilities and drinking. He has been pretty much out of my life (his choice) since I was little. Him and every one of his family members have anger management issues. I was told that his family has had numerous mental problems that increase with age and numerous immune disorders. He was diagnosed with heart disease, schizophrenia, PTSD, and increasing dementia in his 50's at a VA hospital. My grandma died in her 50's from uterine cancer. His youngest sister died in her late 20's from some sort of fast moving MS. I don't know about any of the rest of his family.

My mom has sarcoidosis and is on medication for depression. My grandma had several strokes in her 60's that left her permanently disabled. She could no longer feel her body and was wheelchair bound, then bedridden with the mentality of a 5 year old. She had chronic bladder and kidney infections throughout her life and died from septicemia. My grandpa died this past year from Alzheimer's. All of my aunts are on antidepressants and thyroid medication.

One of my sisters has bipolar disorder and is actually allergic to the cold. She is suffering from symptoms that I believe are endometrisosis, but she has no insurance and will not go to have the laparoscopy done and will not take the medication. The other sister has been on antidepressants for years for severe mood swings and depression and just had her entire thyroid removed at age 35 due to hyperthyroidism and multiple nodules that were increasing rapidly in number and size.

My husband has high blood pressure that is managed with two meds. Heart disease runs in his family. He's had a few surgeries over the years, beginning at 14 after an accident left him without a spleen. Afterwards he had more surgeries for adhesions due to that surgery. He's had kidney stones and a rotator cuff surgery. He is very healthy otherwise and never gets colds or flu. He has a very positive outlook and is always the family cheerleader. He's the positive force that keeps our family going! He's a very avid outdoors man and loves archery. He coaches 4-H and JOAD archery each week. He's still my sweetheart. He asks me out on dates all the time.

My increasing health issues have put a bit of a slow-down on our going though. Just today when he called to check on me, I began crying and asking him how he could put up with me being sick and irritable all the time and his reply was, "I know who you really are deep down inside, even when that person is masked by the flares of fatigue, pain, and angry outbursts. There are still sunny days when she comes out and shines, and I always remember those days and not the bad ones. You hang in there and we will beat this sweety!" Yeah...wiping away the tears again...

My husband's mother has heart disease, has had a heart attack, and has fibromyalgia. His father has always been very healthy. His oldest sister was born with cerebral palsy. She didn't walk until she was 3 and had very weak muscles. As she grew, her mentality never caught up with her age. She remained a toddler in her mind even though her body grew. At 15 she could no longer walk and became wheelchair bound. She died in her 30's after a long battle with pneumonia. His younger sister is dyslexic, but otherwise healthy.

My 21 year-old son is borderline ADHD and is currently being tested for narcolepsy. He wet the bed until he was 12 and sometimes still has issues with increased urgency. Otherwise he is very healthy and very active. He was very active in archery for years, won a spot on the US Archery team, traveled to Denmark, Mexico, and all over the US competing with them, and lived at the Olympic Training Center in Chula Vista CA from age 16-18. He lived with his personal coach to train for the Olympics for about a year until he nearly severed his thumb in a construction accident. I homeschooled him from 9th grade through graduation, sometimes by computer and sometimes by phone over great distances. He came home and started college, but has great difficulty staying awake for classes.

My 16 year-old daughter has several neurological issues that she's had since birth. She couldn't stand to be touched and we had to feed her from a car seat. She still to this day hates for people to hug her or touch her. When we picked her up she was like a noodle. She didn't seem to have strong muscles. The doctor said she was fine and that it would go away over time. Growing up, she fell often and broke her arm twice before she was 5. She tripped over everything, rode her bike into mailboxes and cars, and choked on her food and even her own saliva at times. She has had numerous bladder infections and always seems to have accidents, so she wears pads constantly. She has slow reflexes. She had a very odd way of running that everyone mentioned was weird and she fell nearly every time she ran. When she went through puberty, her legs hurt so bad she couldn't walk and she developed weird scaly patches on her scalp. They diagnosed her with psoriatic arthritis. It went away after a few months and she's never had it since. She developed s multinodular goiter and had a radioactive scan (hot nodules) and FNAB, which was negative. Her thyroid labs are always all negative, and her goiter shrinks and enlarges. Last year she stepped wrong serving a volleyball and dislocated her knee. She was in PT for months. Over the past two years, she has been dealing with increasingly bad cramping and long, heavy periods just like I did. Her cramping was so bad that her gynocologist (whom I love to death!) said she might be showing early signs of endo and put her on medication to keep it at bay.

All of her neurological issues were shrugged off by doctors over the years who acted as if I was trying to make a mountain out of a molehill. Even though she has had all these issues, she is extremely smart and active. She's attending college for dual credit at 16 and is helping the older college students with their English. She was an avid archer for years placing first in the nation a few years ago, received her coaching certificate and coaches 4-H archery. She has been homeschooled since 4th grade, but also attends a class at a local school that I can't teach her (along with her two college classes). She works part time at a sporting goods store as well.

My 14 year old was a very healthy baby until I started feeding her solid foods. She began having tummy issues around 12 months that the doctor said was just gas. Over the years she seemed to be sick quite a bit, especially after meals. Her pediatrician said he didn't think it was a big deal, and the fact that she was tiny and not growing like the other kids didn't seem to alarm him either. When my kids were all small, I started them all on phonics and reading programs. My two older children were reading and doing easy math at 3. My little girl didn't seem to be able to remember letters and numbers like her siblings and began writing letters backwards. She was diagnosed with dyslexia when she was 6.

She was my little tomboy and was always a little go-getter until about age 7. She started to become pale, lethargic, whiny and stayed on the couch instead of going out to play. She was only 37 pounds and tiny, but the doctor said even though she was well underneath the normal growth chart lines, she was ok and I worried too much. He said she was tiny because she was a preemie and just stressed from 1st grade and her trouble keeping up due to her dyslexia. One year later when she was 8 and only 39 pounds, I received a frantic call from the school nurse saying she collapsed on the playground, had fever, and was rolled up in a ball holding her lower tummy. The nurse wanted to call 911, believing she was having an appendicitis attack. We asked her not to because we lived right around the corner and could be there faster. At the ER, they ruled out appendicitis, but the little foreign doctor said she believed my daughter might have celiac sprue.

That week we had her in to see a pediatric gastroenterologist who looked her over and ran blood work. She had a lower GI, a lactose tolerance test, and blood work. The lactose intolerance test was positive, the lower GI and bloodwork were negative for any disease, including celiac. He told us she definitely did not have celiac! He told us to take her home and keep a diary of what she ate and how she felt. over the next several months, her symptoms got increasingly worse.

She was seeing the PG every month and he would order more tests, but never looked at her food diary. It got to the point that she was rolled up in a ball on her chair at the dining room table in tears. She would run to the bathroom a little while later with horrible diarrhea. It seemed to me like she had all the symptoms of celiac, so I began investigating it myself on the internet and found a forum with wonderful people who were suffering from or had children suffering from the condition. One woman who has celiac is also a pediatrician. She told me that I could figure out if she had it or not by putting her on a gluten-free diet. My daughter was better within days and gained 8 lbs in one month!

When we went to the PG I was so excited! I told him what I had figured out and he was very mad at me. He said people should not be going on the internet looking up things to pick and choose their own diagnosis. The blood work was negative, so she did NOT have it. When I asked him how she could have gained weight and now feels so much better on the diet. His answer was that whatever she had had resolved itself on it own. I said I didn't believe that. He decided, after months of my daughter being in horrific pain and wasting away under his care, that she needed a small bowel biopsy to show us she did not have celiac. The only way to do this was for us to put her back on a gluten diet for one month, called a gluten challenge, and then she would be scheduled for a biopsy.

The gluten challenge only lasted 3 days before we decided to save our daughter the extreme torment she was immediately in. The wonderful lady on the forum said it was bull and not to torment her like that. She said that doctor was a donkey (but not that nicely if you get my meaning) and that she was sick and tired of doctors giving people the run-around. Our daughter has been gluten-free ever since and has only had gluten accidentally twice in the past 5 years. One time she ate sour punch straws (candy) and rolled up in a ball on the floor for hours crying and had diarrhea. The other time we couldn't figure out where she got it from. She is still small for her age but she's very active and healthy. She will be 15 next month and is 5' and weighs 90 lbs. Her doctor said she is probably done growing. She is an amazing singer (big pipes for such a tiny girl), figure skater, and is a very tough little cookie!

Our youngest little guy we adopted from China in 2007. We learned he would probably never be adopted due to his being deaf and older. He would be forced out onto the streets in China when he was 14. We were not looking to adopt a child at all when we found out about him, but couldn't let the poor little guy waste away in an orphanage unloved. he had our hearts the minute we saw his picture and learned about his sad story. I set about getting our home study, wading through red-tape, paperwork, embassy visits, background checks, etc... for our dossier. A year later I flew to China to get our little guy. He was ten at the time and tiny for a ten year-old at that. He was so skinny! He was only 4'7" and weighed 70 lbs.

While in China I noticed that he squinted and tripped quite a bit. He failed his eye exam at the US Embassy in Guangzhou. When we got home I took him to the eye doctor and found out he has Retinitis Pigmentosa and Usher's Syndrome. The eye doctor said he was beginning to lose his vision. This was so sad to learn, that this little boy would grow up to be deaf AND blind! But we are a family that doesn't give in to adversity and health issues and sit on the sidelines. We try to go on as if nothing is wrong and do our very best, so this little guy will also learn to have a normal life and do all the things he is interested in.

He gained weight quickly and has grown like a weed. He attends our local public school and is in mainstream classes for math, science, art and P.E. and attends deaf-ed classes for reading and language arts, and gets straight A's! He loves to cook, play basketball, loves to ride his brother's 4-wheeler, and is a great archer. He won 1st at JOAD state last year and traveled to Oklahoma with his dad for JOAD nationals (archery). He's won 1st place at nearly every archery tournament he's been to. He is now 12 and is 5'9 and weighs 130 lbs. and is the healthiest person in our house. He was sick his first Christmas here for two days only, and he got the flu this past September but was only sick two days.

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by TamraW, Oct 21, 2009
My Celiac tests came back negative, yet I feel horrible when I eat gluten. It sounds to me like your family suffers from auto-immune diseases. They can be hereditary. Your sister and daughter have thyroid disease. That puts you at high risk.  I do not understand how your daughter can have a goiter that comes and goes without antibodies attacking it. I hope you and her both get your TGab and Anti-TPO tests for Hashimoto's.

Also, I have spoken to a few women with Hashi, and one thing we are finding in common (strange) is that our babies came out with a disorder called Sensory Integration Disorder. I don't know yet if this disorder is linked to Hashi, or if it's just a HUGE coincidence, but I noticed that your daughter had issues with chewing foods, touch, and coordination, all signs of SIDS. My daughter went to occupational therapy at age three, and the aggressive treatment has helped her tremendously. We still can't get her to put on jeans, but she's getting better at riding a bike, and she can now feed herself and she doesn't freak when she spills a few drops of juice on her legs. She's six now. SIDS can be confused with Autism or ADHD.

:) Tamra

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by TinaMarieTX, Oct 22, 2009
I'm writing all these tests down so I can ask my doctor for them for me! I had a very awful night last night, and I'm going to post a new question on the forum about it in a few. When I start feeling better, I don't want to go. When I feel like I did last night I change my mind and want to go again because I get so tired of feeling bad. Just so tired of being told every test is normal and it must be stress related :(

Charly has been seen by several doctors and an endocrinologist. Her Hashimoto's test was negative, as were all her labs, but she has a multi-nodular goiter that doesn't ever go away, but increases and decreases in size. She also has mood swings, loses and gains weight, has constipation or diahhrea, and has other weird symptoms when her thyroid goes up or down in size. She had a radioactive scan of her thyroid and a biopsy on two of the bigger nodules, all neg. Her endo wanted to remove that half of her thyroid, but our family doc said that's ridiculous at her age because her labs are always ok. We just got a new endo at the local Scott & White clinic, so I'm taking all her labs and scans to him for another opinion.

You know, we really thought Charly might have a very mild form of Autism when she was little because she didn't want to be held or touched and she didn't play like other kids. She would line things up and freak out if someone got something out of order. She was a neat freak and lined things up and counted her steps, but now she's a slob and doesn't have the same compulsion to have order. Come to think of it now, she would also freak out as a toddler if any of her different foods were touching on her plate. She also had such horrible constipation and huge BM's starting when she was a toddler. I will have to go back and add that into my journal. We used to have to give her these tiny little enemas for little ones or she would go 5 days or more without a BM, even with stool softeners. Poor baby had anal fissures for forever. But, of course my doctor at that time thought I was looking for something to be wrong with her. She doesn"t seem to have all the same sensory issues as she did< but she still has slow reflexes< is uncoordinated

My sister had negative labs for immune disorders that would attack her thyroid, but she was positive for hperthyroid and had so many nodules that were increasing in size. Two different endocriniologists told her she needed to have it removed, so she did a year ago. She now wishes she had not gotten it removed because they can't get her meds right and she's miserable.

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