She's going to check him again in 3 months to decide if she should officially diagnose him. She says nothing can be done and I don't like what I've been reading about it.
Update: At Jett's last visit, the cardiologist was relieved to see that Jett's lungs are healing and his PH is correcting itself. I have added Vitamin C (he's up to 4,000 mg a day) and magnesium to his daily supplements.
Anyone dealing with this? Can anything be done to strengthen the small arteries of the lung so they aren't so narrow? Jett has no symptoms: no snoring, never been sick, no shortness of breath, not turning blue, full of energy, not particularly weak (and don't know if he is light headed).
These are the responses I got as well as research I've collected so far:
- CoQ10 Coenzyme Q10 at a dose of 200 - 600 mg per day showed benefits to those with PAH. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4143816/ for details.
-chembalance.com helps improve circulation based on individual biochemistry. Need those good minerals and electrolytes in place to help the body heal. Fundamental!
Mom, Ali's experience
My son was diagnosed at birth and still has it. Some of our kids grow out of it. Not my little guy, but he is riding steady with it. He is on oxygen at night. He never turns blue even though his sats SAY he is below 90%. He is on revacio (viagra). Some kids go on traclear, but it is damaging to the liver.
I used to let PH rule my fears. Now, I just let it go because no matter how much I worry, it will run its course. After 9 years....I had to stop worrying. Easy for me to say though.
The cardiologist says it isn't a cardiac problem. The pulmonologist says it isn't a lung issue. Go figure...
I do have to say this - my son does tire easily. He has to use a wheel chair when we go places. IDN if it has anything to do with his PH. He can't tolerate heat. BUT, he was on a vent and had a trach from birth because of the PH. So, we are sooo far from that - we are grateful.
I don't know if I helped you in any way. I know when I asked folks...about PH, nothing ANYONE said calmed my fears. Only time did.
If it were me.... along with monitoring things with the cardiologist and a good preferably naturopathic MD.... I'd be using CO Q10 in a hefty dose and also some policosanol. Garlic is good too and there is probably a host of other supports in certain foods and supps. Jack has had CO Q10 daily for years. I'd try to consult with someone well-versed in supplement support... perhaps a TCM (Traditional Chinese Medicine) practitioner?
What is pulmonary hypertension?
Also Called 'Secondary Pulmonary Hypertension', 'Secondary Pulmonary Hypertension'
Pulmonary hypertension is a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.
Why do the pulmonary arteries narrow?
Scientists believe that the process starts with injury to the layer of cells that line the small blood vessels of the lungs. This injury, which occurs for unknown reasons, may cause changes in the way these cells interact with the smooth muscle cells in the vessel wall. As a result, the smooth muscle contracts more than normal and narrows the vessel.
What are the symptoms of pulmonary hypertension?
Symptoms of pulmonary hypertension do not usually occur until the condition has progressed. The first symptom of pulmonary hypertension is usually shortness of breath with everyday activities, such as climbing stairs. Fatigue, dizziness, and fainting spells also can be symptoms. Swelling in the ankles, abdomen or legs; bluish lips and skin, and chest pain may occur as strain on the heart increases. Symptoms range in severity and a given patient may not have all of the symptoms.
In more advanced stages of the disease, even minimal activity will produce some of the symptoms. Additional symptoms include irregular heart beat (palpitations or strong, throbbing sensation), racing pulse, passing out or dizziness, progressive shortness of breath during exercise or activity, and difficulty breathing at rest. Eventually, it may become difficult to carry out any activities as the disease worsens.
In addition to the heart defects associated with Down Syndrome, isolated elevated blood pressure in the lungs (pulmonary hypertension) is seen with higher frequency in patients with Down syndrome. This high pressure may be related to malformation of the lung tissue, although the exact cause is not known.
The higher pressures may limit the amount of blood flow to the lungs and therefore decrease the likelihood of symptoms of congestive heart failure seen in babies with complete AV canals or large ventricular septal defects.
However, since the pulmonary hypertension can become irreversible, particularly if these large holes are not surgically corrected by a year of age, children with Down syndrome and AV canals or large ventricular septal defects are often referred for surgery earlier than a non-Down syndrome child with the same heart defect.
If the baby does have evidence of high pressures in the lungs, it may complicate postoperative management and hence prolong the recovery time.
Children with Down syndrome (DS) are at an increased risk of developing pulmonary arterial hypertension (PAH) due to multiple factors: congenital heart disease (CHD) with persistent left-to-right shunts, chronic upper airway obstruction, abnormal pulmonary vasculature growth, alveolar hypoventilation, and recurrent pulmonary infections. Congenital cardiac defects are reported in 19-43% of cases. With the common lesion is an endocardial cushion defect in 43%. DS and CHD seem to develop PAH at a faster rate and have persistent disease after cardiac surgery compared to non-DS patients with similar defects. The upper airway obstruction is common in DS due to midfacial hypoplasia, macroglossia, narrowing of the nasopharynx, tonsillar and adenoidal enlargement, laryngomalacia, tracheomalacia, and congenital malformations of the larynx and trachea. The incidence of OSA was reported to be in a range of 30-50%. Exacerbating factors including obesity and gastroesophageal reflux may contribute to the occurrence of sleep apnea. In this report, I review the causes of pulmonary hypertension in this population, and its management.
Certain mineral supplements are helpful that will protect against lipid peroxidation, which means fats becomes oxidizes and hardens such as selenium yeast supplements, usually 200 mcg a day, certain supplements added such as granulated lecithin 1 tablespoon a day to 3 tablespoons a day. The fat emulsifiers such as sunflower lecithin will further help dissolve the fat increasing circulation, but at the same time lecithin will help normalize the cellular makeup of the veins to become more elastic also.
Another remedy that help is to remove heavy metals, which is responsible for lipid peroxidation of the fats, leading to plaques, clogged veins, arteries, and capillaries. Therefore cilantro, or chlorella, may be helpful, but it's usually taken once every two days, so that the body would not be overloaded with heavy metals and allow the gatekeeper, the kidneys to slowly remove out of the system, as the metal chelators line up to get out from the system via the kidney or sometimes the intestines. To further increase circulation certain herbs such as gingko and asia pennyworth is taken. These help rebuild the capillaries and damaged systems. For the body to regenerate itself some aloe vera juice is occasionally taken, such as twice or three times a week.
Primarily raw vegetables are preferred, either in the form of salads, soups, but vegetables should not be overcooked to preserve the enzymes and vitamins. In this instances some fruits, followed by a mild exercise to burn off the sugar is possible, but I think 30 minutes is the bare minimum after meals, but ideally 1 hour. A slow walk or other mild form of exercise can be done also. I believe some vitamin C is important in protecting pulmonary problems too but I prefer sodium ascorbate 1000 mg, usually once every other day day should be a reasonable dose.
The cirrhosis of liver that is one of the effects of pulmonary hypertension will also be reduced with the granulated lecithin, as well as the selenium which prevents further lipid peroxidation too. [Andi's note: be sure to get selenium levels checked before supplementing.] Magnesium supplements (without the calcium) such as magnesium glycinate, should tip over the excessive calcium found in the tissue.
Furthermore, the use of 2 tablespoon of apple cider vinegar with 1/4 teaspoon of baking soda in 1 glass of water, or a stronger alkalizing baking soda of 1/2 teaspoon twice a day will also help remove some excessive fats, as vinegar has a component which dissolves the fat, but the baking soda, because of its alkalinity, acts as a very weak soap also to remove the excessive fat buildup which may lead to pulmonary hypertension just the same.
Magnesium is also needed, and is a common deficiency will offset the excessive calcium deposits which might cause either arterial or venous inflexibility due to calcium deposits, leading to hypertension also. If calcium buildup did cause this kind of hypertension, then adding disodium EDTA for example, instead of calcium EDTA, of 1/8 teaspoon in one liter of drinking water should also remove excessive calcium buildup this way. This might be taken once every two days, for example. Magnesium will lead to reduce muscle pain as it relaxes both the muscles, but also the arterial blood flows. If these are more relaxed, then pulmonary hypertension are reduced.
However, in my opinion disodium EDTA is a bit too acid for it to work effectively so I might add 1/8 teaspoon of baking soda also, plus 1/8 teaspoon of potassium bicarbonate to the solution. Potassium is often low in a pulmonary hypertension so the ratio of sodium: potassium is just 1: 1, with baking soda at 1/8 teaspoon and potassium bicarbonate at 1/8 teaspoon also. It should be noted that free metal iron accumulates in the heart which may lead to heart disease, and it is some small amount of EDTA which will reduce this iron buildup protecting the heart against free radicals of free metal iron too.
It should be noted that whenever a vegetarian diets is used, that common table salt be avoided and replaced with unbleached sea salt instead, and some sea salt 1/4 teaspoon is added in one liter of drinking water, as vegetarian diets are generally potassium rich anyway and many people I have found may not adapt very well to high potassium diets and hence some sea salt is added just enough that the body doesn't end up with the lack of sodium, which can lead to another problem altogether, such as weaknesses. [Andi's note: Many heart medications interact with potassium rich foods. I know either Enalapril or Digoxin does interact. Be sure to check the labels and ask your pharmacist.]
Bill from San Fernando, Luzon, Philippines replies: "Hi Ivette...Here is another suggestion that may well help your condition. It is based on the Linus Pauling Heart Therapy. It is a very cheap and easy approach to getting rid of arterial plaque which was proved by the research from Linus Pauling. Here is the protocol:
6 GRAMS of Vitamin C (as sodium ascorbate) per day
6 GRAMS of Lysine (an amino acid) per day
This is a daily protocol.
Best to split these large doses into 3 or 6 doses a day. You can purchase Vitamin C and Lysine at any health shop fairly cheaply. Put simply and without going into detail, the way this remedy works is that the Vitamin C helps to scrape off and get rid of the arterial plaque -- called or referred to as "Arterial Scurvy" by Pauling -- and the lysine just stops it forming again.
The reason you probably haven't heard of this heart therapy protocol is that it has been widely ignored and suppressed for the last 20 years by the drugs companies. They don't like the fact that people can cure heart disease so easily and cheaply, this robs the medical fraternity of the tremendous profits made from both their heart drugs and bypass surgery.
But now, through independent researchers testing the validity and efficacy of Linus Pauling's research conclusions and therapy, more peer reviewed research are confirming Pauling's conclusions and therapy as a truly successful way to treat heart disease and arteriosclerosis. Here is an article that explains this well:
Vitamin C, Linus Pauling was right all along. A doctor's opinion
And here, in his own words, is an audio recording by Linus Pauling describing testimonials and results that he himself has obtained using his simple Vitaminc/Lysine therapy against heart disease and arterial plaque:
The Pauling Therapy with Testimonials -- by Linus Pauling (Audio recording)
(Taken from The Pauling-Therapy Website )
Pauling himself took between 10 - 12 GRAMS of Vitamin C and Lysine daily, and he lived into his nineties without heart problems.
From my own research of the testimonials, using this Pauling Therapy should give beneficial and noticeable results within 2 weeks to a month."
Krista from Lachine, Michigan writes: "I'm reading these posts and would like to know if this mullen, lobelia and hyssop tea would help someone with primary pulmonary hypertension? My mom has had it for about 6 years and has trouble breathing when she exerts herself, sometimes just making the bed is difficult for her. Or maybe someone has some other ideas? Krista"
EC: Krista is referring to Jack's Emphysema remedies.
10/16/2010: Mrs from Washington, Dc replies: "No, your mother should be on a regimen of PDE-5 inhibitors, endothelin antagonists and prostinoids, the only demonstrated treatment for pulmonary hypertension."
If you want to find out more about PPH check out this wonderful, supportive website. www.phassocition.org"
03/30/2011: Kc from Ny, Ny/usa replies: "J in San Diego: as bad as it seems there is reason for hope. There are some very exciting research results coming from labs that study rats and mice with PH created in the lab. These animals show the same cellular changes and heart and lung changes as patients. A research team in Quebec found a specific protein that is only found in pulmonary artery of rats and people with PH. The protein was shown to cause cells in blood vessel walls to grow out of control and block blood flow into lung. They used drugs that block the protein and found them to reverse PH in lab animals. The drugs are soon being tested for safety and it is predicted trials will start in human PH patients in less than two years."
The Heart & Down Syndrome
Preparing for Heart Surgery/Hospital Stay
Gingko: The Hows and Whys for Down Syndrome
Alzheimer's Disease & DS: Connection and Treatment...
Thyroid & DS Go Hand in Hand
Celiac Disease & Down Syndrome
Anemia Causes & Cures
Fermented Cod Liver Oil
Coconut Oil Info and Recipes
Fats & Oils
Cystic Fibrosis of Pancreas and Down's Syndrome
My son had pulmonary hypertension at birth. According to the doctors, his pulmonary hypertension wasn't related to the syndrome. There are even typical babies that get it at birth. In my son case he had respiratory distress syndrome due to some complications during labor. His pulmonary hypertension was result of the respiratory distress syndrome. The doctors told us after he grew out of that, it won't happen again. He spent 13 days in the NICU, but after that we haven't had problem with it.
Wow, can't believe I haven't red this earlier. My daughter was diagnosed with PHT at 5 months of age, due to an undiagnosed diaphragmatic hernia. She has needed to have it repaired twice. Since then she has come off the sildenifil and her cardiologist said as she grows, so will her lungs and vessels and it will more likely not be a problem. He said the real test will come in a few more months when she is 2.
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