Ok...this is LONG and boring. This is more notes for me, so I can somewhat keep track of my random thoughts. So, if anyone else gets through this, without either a) falling asleep or b) getting sick...kuddos to you.
This is a note to myself to try and figure out some of Benjamin's signs and symptoms. Also to 'talk through' some of my frusterations.
Some of the symptoms Ben portrays:
Excesive thirst
Excesive urination
Irritability
Ulcers on tongue
Poor Appetite
Eating problems
Vomiting
Gag reflex
Food texture intolerance
Mood swings
Sweats easily (especially while sleeping)
'Pebble' Poop
'Failure to Thrive'
No teeth until 1 year old
teeth discoloration (extra placque)
There was also a period of time that he had extra dry skin...especially on his legs. For awhile he had fevers, periodically...like every 2 to 3 weeks.
The last 2 visits to the G.I. office, I mentioned to Carol (The physicians assistant) that Benjamin had sores on his tongue...she vaguely looked at them, and said something about that being normal. I mentioned the pebble poops...and though they seem so inclined to 'blanket' diagnois Ben with medications for Reflux (without knowing for sure if he even has it) do they mention anything about a supository? or constipation medication? all they say is give him Benifiber. I would much rather him just be given fiber..and nothing 'synthetic', yet the benifiber hasn't helped with the pebble poops.
the medications that ben is on hasn't helped with his vomiting, and he has been on them for 3 or months. 2 times ago the upped the dosage on the Reglan...and this last visit, when I said that it still wasn't helping...all she had to say was 'hhmm, that dosage should be helping'...as if it was MY fault it wasn't working (maybe she wonders if I am even giving it to him...which we are, but we don't want to) So, anyways...she doesn't change the medication dosage, or tell me that he doesn't need to be on it.
This last visit they said to take Benjamin of all Dairy, and also no Soy milk. They want Neocate, only. To see if he has a protein intolerance. I mentioned that I would like to add the neocate to juice. She said no because juice is just junk...and they want the majority of his calories to be from the Neocate. Well, adding it to juice, and stuff is the only way that he will drink it...do they care? No! They would rather that he digress, and for me to feed the neocate through his tube, instead of figuring out a way for him to drink it. I have been adding it to juice, and mixing in baby food, or frozen bananas, anyways.
Oh...don't get me started on when we were seeing the Kidney Doctor. It was always NO WATER...every time we visit. I mention the few ounces of water that we have given him, and the nutritionist freaks out saying 'if only that had been calorie intake'! He needs water! Of course, the first time I go to see the G.I. doctor and mention his 'pebble poop' the first thing she says is 'he needs more water'. GGrrrr..
Ok...I really wish that I would have kept a medical time line for Benjamin. It would truly help me in pin pointing my frusterations. I just sometimes have a hard time with 'detail' and organization. Always afraid that I won't document it quite right, or remember the correct details. I guess I should be taking notes when he goes to the doctor... it would help to clarify things. And also to organize my thoughts.
Oh....one other challenge I am facing, is they don't seem to want to try and 'diagnois' what might be wrong with him, through easy tests that can be done at the clinic. Such as maybe a poop test, or a urine test. Mores extensive tests done through blood work, etc. Stuff that he doesn't need to go to the hospital for. I am thinking/wondering if maybe I should get him an appointment with our regular doctor, and mention some of my concerns...se if they are willing to do some of the testing.
Heheee...I was just thinking that we need a doctor like 'HOUSE" on the case.
Well, during my research...when I look up some of his symptoms, I have wondered about a couple of different diseases/illnessess:
Diabetes Insipidus:
Diabetes insipidus is a condition that results from insufficient production of the antidiuretic hormone (ADH), a hormone that helps the kidneys and body conserve the correct amount of water.
http://www.cnmc.org/dcchildrens/forparents/GreystoneDisplay.aspx?GreystoneId=P01948
Symptoms:
* excessive thirst
* excessive urine production
* dehydration
Infants with diabetes insipidus may also exhibit the following symptoms:
* irritability
* poor feeding
* failure to grow
* high fevers
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Celiac Disease
Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. Gluten is found mainly in foods, but is also found in products we use every day, such as stamp and envelope adhesive, medicines, and vitamins.
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
Symptoms:
* gas
* recurring abdominal bloating and pain
* chronic diarrhea
* 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
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GERD-Acid Reflux
http://www.webmd.com/content/article/75/89790.htm
Symptoms:
* Frequent or recurrent vomiting.
* Frequent or persistent cough.
* Refusing to eat or difficulty eating (choking or gagging with feeding).
* Crying with feeding.
* Heartburn, gas or abdominal pain.
Malabsorption
http://www.nlm.nih.gov/medlineplus/ency/article/000299.htm
Malabsorption can result from a broad spectrum of diseases. Typically, malabsorption can be the failure to absorb specific sugars, fats, proteins, or vitamins, or it can be a general malabsorption of food. Diarrhea, bloating or cramping, failure to thrive, frequent bulky stools, muscle wasting, and a distended abdomen may accompany malabsorption.
Symptoms:
* Gas, bloating, and vague abdominal discomfort.
* Frequent diarrhea and foul-smelling stools.
* Weakness.
* Weight loss.
* Growth Failure
Causes of Malabsorption:
* Cystic fibrosis (the number one cause in the U.S.)
* Chronic pancreatitis
* Lactose intolerance
* Celiac disease (gluten-induced-enteropathy, sprue)
* Whipple disease
* Shwachman-Diamond syndrome
* Bovine lactalbumin intolerance (cow's milk protein)
* Soy milk protein intolerance
* Acrodermatitis enteropathica causing zinc malabsorption
* Biliary atresia
* Abetalipoproteinemia
* Vitamin B-12 malabsorption may be due to:
o Diphyllobothrium latum infestation
o Juvenile pernicious anemia
* Parasites
o Giardia lamblia
o Strongyloides stercoralis
o Necator americanus (hookworm)
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Protein Intolerance/allergy
protein intolerance, food allergy, food-protein intolerance, food protein intolerance, food-protein allergy, cow's milk intolerance, cow's milk allergy, egg intolerance, egg allergy, soy intolerance, soy allergy, cow's milk protein, food allergens
http://www.emedicine.com/ped/topic1908.htm (**note to self... Study this link more)
A number of different symptoms can be a consequence of food protein intolerance. Gastrointestinal manifestations are the most common clinical presentation, usually without involvement of other organ systems. Most of the cases of food protein intolerance in the pediatric population occur in the first months of life as a consequence of cow's milk protein intolerance. The typical history is that of an infant younger than 6 months who is fed for a few weeks with formula and who then develops diarrhea and eventually vomiting. In the case of the common enterocolitis syndrome, the infant can become dehydrated and lose weight. In the rare instance of cow's milk enteropathy, a malabsorption syndrome develops, with growth failure and hypoalbuminemia. On the other hand, the common food-induced proctocolitis syndrome is characterized by diarrhea in a healthy infant without any weight loss.
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The more I study, and learn about what can effect a child, and what problems/challenges we may face...the more I am in aawww that children survive, and make it through childhood. I am surprised that with so many 'possible' diseases or challenges linked with symptoms that children can portray, that more people aren't freaking out, trying to figure out what disease/illness their child 'might' have. It really affirms to me the cycle of life...and the greatness of who we each are, individually. Life is precious. We must each have dozens of guardian angels to help us to get through the day. Not only physically, but spiritually, mentally, and health wise. (K...enough philosophy.)
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