Sunday, May 20, 2012

Rescuing my son: Finding answers

After confirming with the blood work, my son has food sentitivy due to the gut (Intestine) is not working properly, I had a lot of questions about this issue. How did this happen? What cause his gut not working properly? What happened to the good bacteria? What can cause gut inflammation?To find answer to my questions, we searched for possible medical causes by going through our son's medical history.


Finding answers

Was Tommy previously tested for food sensitivity or intolerance?
Yes, he was tested in March 2010 because we are very proactive in monitoring Tommy's health. He was tested for gluten sensitivity and the test came back NEGATIVE and his levels were perfectly normal. We wanted to make sure everything was alright because some family members have Celiac and kids with T21 are at a higher risk for Celiac. Tommy's gut was working propertly previous to the hospitalization (January 2011). 


What can cause gut inflammation?
Some of the common causes are:

  • Drugs: Antibiotics, Steroid drugs, Birth control pills, Chemotherapeutic agents, etc.
  • Diet: refined sugar and flour, processed foods, chemical food additives such as artificial colours and flavours, alcohol (including, beer and wine), soda pop and caffeine act on the body like toxins. 
  • Nutrient deficiency: If your body doesn't absorb the  nutrients properly, it creates a nutrient deficiency. So absorbing Zinc, Vitamin B6, Vitamin A, and glutamine is important because they are essential nutrients for maintaining the intestinal wall integrity.
  • Microorganisms and Free Radicals: parasites, bacteria, mold, mycotoxins.
  • Various Diseases and Disorders: Inflammatory conditions of the intestines such as Crohn's Disease, colitis, celiac, and pancreatitis. Other diseases such as:  HIV/AIDS, Candidiasis, Cancers of the gastro-intestinal tract, Food Allergies, ect.
  • Lifestyle: A high-stress lifestyle and smoking (nicotine).


What medications were giving to Tommy while in the hospital?
When I made this question to my self, I went to Tommy's medical binder and I read everything about the medications were given to him, including the smallest printed letters. Two medications called my attention Azithromycin (antibiotic and Prednisolone (steroid), they are commonly used for treating upper airway infections. Both medications have the following side effects in common:


Muscle Weakness. The lost of muscle strength was very evident at the hospital and I even asked for physical therapy while he was at the hospital, we all thought it was due to the lack of physical activity that usually happen after being in bed for many days. Tommy couldn't sit for days, after he could sit on his own, he couldn't walk. So his muscle weakness was shown right at the hospital. But we realized how bad it was when we came home that he couldn't go up the stairs holding the real. Tommy's motor regressions were very evident the day he came back from the hospital on February 2, 2011. We kept giving his the same medications for about 2 more weeks by the doctors recommendation.


Gut issues, other side effect that pop up to my eyes. Which is what we have seen progressly happening after the hospitalization. According to the document given to us about the medications, symtoms of gut issues can appear even months later after being on the medication. 


Remember, Tommy never had antibiotics before until he was hospitalized. Because of the high risk of him getting pneumonia; Doctors did what they have to do, no question about it. But  there is not doubt that the antibiotics killed any bacteria in his body, including the good bacteria that support the gut to work properly. This is becoming an issues in the medical community and Dr. Michael in the video below explains this issue.


The same information is ratified by the Pharmacist Sherry Torkos

The poor guy was on these medications for a long period of time. So the possibilities he has a reaction to these medications are high. In the other hand, according to scientist research, people with Trisomy 21 don't absorb nutrients properly —this is the reason the are two labs creating special vitamins for kids with T21 to address thier nutritional needs. So Tommy gut inflammation, in my opinion, probably it may be a combination of a reaction to the medications and the extra genetic material.


Why did my son's gut get so much affected?
There are two reasons why his gut could go so affected. The first reason is that my son's wasn't eating or drinking while he was hospitalized, he was getting intravenous therapy (IV); so, he wasn't getting any type of food that could coat the stomach and intestines walls, while he was getting the antibiotics through the IV. The second reason is that he was in an antibiotic for a long period of time. He was getting the antibiotic and steroid at the hospital and for about two more weeks after he left the hospital. Tommy never before had any type of antibiotics, so the possibilities he has a reaction to the medication is high.


Did Tommy has some symptoms his gut wasn't properly working after the hospitalization?
Yes, he had loose bowl a few weeks and months after the hospitalization, and this has been one on and off until recently when we started a nutritional intervention. A rash (eczema) also appeared on his face around October 2011. A week after we started the nutritional intervention, the rash began to improve. Currently, it is almost gone.



Why gut issues can affect the brain or vice versa?
I think before understanding how gut issues can lead to sensory issues, we should understand when the gut doesn't process the food properly affects the brain functionality. I am not a Dr., so I am not an expert on these matter, but I found a good explanation in the article "The Gut-brain connection" in the Harvard Health Publication, which is published by Harvard Medical School:
"The brain has a direct effect on the stomach. For example, the very thought of eating can release the stomach’s juices before food gets there. This connection goes both ways. A troubled intestine can send signals to the brain, just as a troubled brain can send signals to the gut. Therefore, a person’s stomach or intestinal distress can be the causeor the product of anxiety, stress, or depression. That’s because the brain and the gastrointestinal (GI) system are intimately connected — so intimately that they should be viewed as one system..."
Why gut issues are linked to sensory issues?
Because of the Brain-Gut Connection. According to Timothy Buie, MD - pediatric gastroenterologist: 
  • Every known neurotransmitter present in the brain is present in the gut. 
  • The gut has independent mechanisms from the brain to regulate actions [enteric nervous system ENS]
Neurotransmitters are biochemicals that transmit signals from one neuron to the other, and then, to the rest of the Central Nervous System and the body. If the gut (intestines) doesn't work properly due to inflammation, this cause a biochemical unbalance because the inability of the gut to absorb all the nutrients that the body and brain need to function properly. According to Nutratest Lab, neurotransmitters are major players in brain chemistry. Neurotransmitters help us think and process the world around us. They can make us depressed, anxious or angry if they are unbalanced. They are critical to our emotional and mental well being.

We know Tommy had some type of sensory issues previous to the hospitalization, but they were not affecting him so much. Unfortunatley, the whole hospitalization experience affected him more than we imagined. I also think there is high possibility that him loosing the cervical curve happened at the hospital, which made the whole situation worse. What happen to Tommy was like a chain reactionso his entire sensory system got disorganized.

How do I feel after founding answers?
"I feel a relief and a guilt." I feel a relief because everything about what I was observing on my son's muscle weakness and worsen of his sensory issues and regressions make senses to me now. I wasn't crazy! I am glad I don't believe in stereotypes, instead I believe in my son, so I can be a good advocate for him. I am glad my mother instinct didn't fail. In the other hand, I feel a guilt for not reading the notes that came with the prescription drugs when my son was relief from the hospital. This notes inform about the medications side effects. If I would know about it right after Tommy was realized from the hospital, we would immediately have him in the right treatment rather than waiting almost a year. Unfortunately, the cure affected him more than what the doctors and we expected.


At some point Doctors, Scientist, pharmacist and Parents will have to sit and talk about antibiotics. It should be medical preventive guidance for patients about what to do after a person is treated with antibiotic for a long period of time. Doctors are busy, so I think not everything should be let on their side; therefore, as petients, we should ask for more information about drugs that are prescribed and their side effects; then, we can have more control over our own health. I learned a lesson!


What will we do if Tommy have to be hospitalized again?
I pray for this doesn't happen again. It is hard to think about it because the time he was there, it was a torture for us. After a year, we still struggle remembering the 13 days he was there.  And after the hospitalization, it has taken time for Tommy to be the child he was. 


If this happens again, I will request Physical therapy, Occupational therapy and Music Therapy. As well as, checking any medication side effect previous to give it to him. 


As prevention, I am looking into getting a DNA testing because this have made me realized Tommy and Francis can have sensitivity to certain medicines like me. Since I was a child, I have had reactions to medications. Talking to other parents with kids with T21, it seems reactions to medications are more common in our kids. I know allergy or sensitivity to drugs can be life threatening, so I feel a relief I found a DNA test that will find the medications that can be dangerous for me, as well as, checking for Tommy's high risk to drug sensitivity. I will also test Francis for my piece of mind.


Meanwhile, we are following the recommendations by the Down Syndrome Center. They suggested we report these two medications as allergy, so he won't get them again. 


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Resource for parents:
One of my favorite well known nutritionist is Kelly Dorfman. She wrote the article "Preventing Sensory Processing Disorders." Click here to read the article.

Sunday, May 6, 2012

Annual Check-up

On May 2, Tommy went to our local Down Syndrome Center for his annual check up. His first appointment was at 10:00 am with a Genetics-Pediatric Doctor and a nurse practitioner. They checked Tommy's overall health and they concluded he is a healthy boy. After this, he had an appointment around 11:30 am with his the eye doctor. After the vision test, the Dr. concluded that Tommy's vision is perfect. At 2:00 pm he has his hearing test. Tommy did excellent, he followed directions and his test result has been the best he has ever had. He has a great hearing! The last visit was at 2:40 pm. He visited an ENT Dr. who checked Tommy's ears, nose and throat. The ENT was impressed of Tommy's overall health. So this make me feel good! He revised all internal structures of Tommy's ears, nose and throat. the ENT Dr. asked my husband if Tommy gets sick and common colds often, my husband said "No", he just get sick with cold during the cold/flu season. The doctor said this makes sense because Tommy is the first child he has seen with his diagnosis with the ENT well structured. The ducts are a little narrower than a typical person, but no as narrow as it is expected for child with his diagnosis. Tommy doesn't have fluids. I am glad the ENT Doctor found the reason why Tommy doesn't get common colds. When I said it to the doctors last year when he was hospitalized, they were skeptical. I think we all have to learn our kids are unique and different like everybody else. they share the same diagnosis, but the way the the extra genetic material affect them is different because it is a genetic disorder and not a disease. 


A month ago, Tommy also had his check-up with Dr. Davis, who checks Tommy's growth due to the hypothyroidism. She also noticed the grow spurt Tommy had since the last time she saw him. He is taller and heavier. The Dr. also commented that Tommy's grows is very consistent, which is very hard to accomplish with his diagnosis, but some how he is accomplishing it. It may be due to early detection and treatment. I will be calling Dr. Davis because I will like to switch to a natural hormone because the body absorb it better.


There is one more appointment we will schedule as part of his annual check up. He will see the pulmonary doctor and we are very optimistic. I took Tommy out of the medication because there is not  difference on having him on the medicine or not. He doesn't show any symptom of asthma, even he got a few colds during winter and he got two times a virus that make him to throw up. After a good nap, he was perfectly fine, like he never got sick. The symptoms never got worse as we told it would be because of the viral asthma and he never showed any asthma symptom (he was already out of the medication). I called to the Down Syndrome Center and I told them I have him out of the medication and why. They agree if there is not a difference is not worthed keeping him on the mediation, so they advise us to make a test to check how his lungs are working and get a clearance.   


Tommy is one of the most healthy kids they have seen at the center. His good health gives me hope because I just have to focused on helping him to overcome his developmental and neurological challenges.