Sunday, March 6, 2011

Confessions of a Mom with Children who aren't "Fine"


This mama is in need of support and ideas. I have sent her the link to this post so she can anonymously become informed. PLEASE take a moment to leave a comment for this mama.

"I watched the video you had posted on your wall about Autism, by Dr. David Davis, and a few others posted by the same man who posted that video on Youtube. I have talked with Jennifer about some of my concerns; she did suggest I add you as a friend because of your knowledge. I feel like no pediatrician has ever listened to my concerns with my children and I am constantly being blown off and have been accused of being depressed.

I would like to give you a summary of my children’s health. I have two chronically ill children that have developmental delays and emotional disorders. I would like to hear what you think I should do. E is 6 years old and he first showed signs of asthma at 5 months and has been on daily medication since then, but was first diagnosed with asthma, eczema, and allergies. He spent years in and out of doctors’ offices and is on adult doses of an asthma medication that is not approved for children under 12 (Symbicort). This comes after the failure of all other asthma medications. He takes 3 different allergy medications daily with Albuterol.

He has been diagnosed with ADHD, ODD and has a questionable “spectrum disorder.” His behavior has improved over the years, with positive reinforcement, but he still has issues on a daily basis. E has received all of his vaccinations, has ear tubes, and has had surgery to remove his tonsils and adenoids all on doctor’s recommendations. E never learned to latch on to breastfeed. E’s IgE levels are above 1200. I can explain what that is if you do not know. He now suffers with headaches that have not been diagnosed. I even had a former pediatrician say they were the cause of my “undiagnosed depression”.

My younger son O is 3 years old. He was premature, (both of the boys were). Owen’s medical history is a bit more extensive; I will try to give an overview with detail. Owen first showed signs of sickness as a newborn. He had a cold at 2 weeks, at 9 months was diagnosed with RSV, at 10 months an undiagnosed “viral infection” in his lungs almost killed him, they then diagnosed him with allergies and asthma. He started having chronic diarrhea around 6 months of age, not to be funny here but it was the most awful smelling stuff imaginable.

This is the age where his health deteriorated; the next two years of our lives were utter hell. He had chronic infections, pharyngitis, strep throat, ear infections, thrush, conjunctivitis, pneumonia, bronchitis, chronic diarrhea, MRSA, eczema, yeast infections and he was failure to thrive at 2 years old, with no weight or height growth in over a year. After his tonsils were removed he started growing again. He has had 2 sets of ear tubes and is in the 10% of children who still get ear infections (both of my children do). His diarrhea was diagnosed as Toddler’s diarrhea, which is IBS in children under 4. He had surgery at 2 to determine the causation of the diarrhea; it was found his pancreas creates low levels of amalayse, which is the enzyme that breaks down carbohydrates.

At 15 months his pediatrician stopped all vaccinations, because he was “high risk for autism.” He entered first steps for developmental delays and worked with a PT, OT and Speech therapist. His final diagnoses were medical issues and Sensory disorder and developmental coordination delay, which will probably end him up on the spectrum as well. He still today sees an OT for these delays; he is better but not 100 percent.

 His last doctor had me investigated for Munchausen’s by proxy after I refused his shots and asked to have him tested for food allergies. He still has chronic sinus infections and it is passed off as allergies. Even though he has tested negative for all environmental allergies, they still refuse to test him for food allergies. I was forced into giving O a flu vaccination in January under threats of child neglect. After almost one year of me fighting to get him off of his daily asthma medication, because he had only had one episode in that time, the doctors finally complied. His diarrhea has improved, and I monitor his diet, but am told by his GI doctors to only restrict high fructose corn syrup and that if I do more than that it may cause issues in the family.

O had a few situations with shots where he had trouble breathing and vomited and had a fever above 102. He was rushed to the ER both times, with doctors saying it was just a coincidence. After I brought those up to the Allergist and Pediatrician, that’s when they started saying there was no documentation and started their "investigation" even though there was ER reports from both occurrences. In January after receiving his flu vaccination he had a fever of 101 for 13 hours. I was instructed to from now on give him Tylenol. His Allergist is saying that I have to get his 4 year old vaccinations, and that he will do what is called a differential testing to make sure he has no allergic reactions.

I am at a loss at what to do here as a parent. We are on state funded insurance; I have very little money and am a single parent. In Indiana it is mandatory for us to get our children vaccinated or they can kick them off of their insurance, unless a doctor will sign off on it. I have no idea where to go from here, I have switched pediatricians and am wary of giving the new doctor my children’s medical reports because accusations of psychosocial issues in the family, especially with the M√ľnchhausen accusations. I should say they never proceeded past talking amongst themselves with the accusation, but it is documented in O’s medical files. If you have some knowledge or thoughts on my situation I would appreciate feedback."

8 comments:

  1. My herat breaks for this family. We have always opted out of vaccines and I am thankful that I never had to put up a fight to do so. The nurses were normally pushy about them, but our doctors were always good.
    Family doctors are generally better than pediatricians concerning this.
    Concerning food alergies, elimination diets are better than tests. They hurt less and give better (more accurate results.) Take out the suspected offending foods for a month or two and add them back one at a time all the while observing carefully the results / reactions.

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  2. First of all, (((hugs))) mama. My heart breaks just reading about your children's struggles. I wish I knew how to go about not vaccinating your children any further. I'd keep looking into every possibility to NOT give your kids any more vaccines, flu shots especially. Is there anyone you can ask for legal advice? I know some states allow you to sign a paper stating that you won't vaccinate your children due to philosophical or personal beliefs, not just because of health issues (which your children have plenty anyway). Are there any natural parenting groups in your area? Talking to moms who don't vaccinate in your area might give you some helpful info...

    Also, as a family who recently switched to gluten-free diet, with weeks spent reading and researching on the subject, my first thought was gluten intolerance/celiac disease. But my guess is that you already investigated that, because I can't imagine that none of the Drs. you came in contact with suspected these obvious reasons for many of the health issues you listed before (ADD/ADHD, diarrhea, infections, etc.) And if you looked into gluten intolerance before, have you looked into GAPS diet as well?

    http://www.gaps.me/preview/?page_id=28

    http://www.gutandpsychologysyndrome.com/gaps-diet/

    I know changing to gluten-free eating can be quite overwhelming at first, but the benefits can be amazing. We didn't have the need to go all the way to GAPS diet, which can be even harder, but it's the ultimate way to see which foods affect your children's health.

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  3. Indiana also has a religious exemption. It is often a common misconception that in order to receive public assistance of any kind (WIC, health care, food stamps, financial assistance) a person gives up their right to vaccine exemptions. Has this mom tried getting a religious exemption affidavit?

    Here are some links:
    http://www.unhinderedliving.com/statevaccexemp.html

    http://www.exemptmychild.com/10752/22701.html

    http://www.vaclib.org/exempt/indiana.htm

    http://www.nvic.org/Vaccine-Laws/state-vaccine-requirements/indiana.aspx

    Even with the exemption though it may be hard to find a doctor who will take both your state health insurance and also support your choice to no longer vaccinate. Totally worth trying though. I have actually had to sit and call every doctor in my area who accepts our insurance and ask if they are accepting new patients, and if they accept non-vaccinating patients.

    I would opt for an elimination diet ASAP. Sounds like dairy and gluten may be adding to some of the issues. Also, eliminate all artificial dyes & MSG as they can cause trouble too and are often over looked. Be strict when doing this and give it at least 30 days (longer is best), since allergens can stay in the system for longer then most people realize.

    Supplements! At the very least get them on a children's probiotic and omegas. You can order online to save money, and even find one you like and check amazon.com because if you may find it there for less with free shipping if it ships from amazon directly.

    I said at the very least...if your budget can handle it start there and add things that help with the immune system and are anti-inflammatory and loaded with anti-oxidants. If you cannot afford supplements that offer this be sure your diet is loaded with foods that offer these things.

    Oh, I almost forgot Vitamin D!!! This has helped our daughter a lot too.
    http://drtenpenny.com/Documents/Vitamin%20D%20and%20You.pdf

    Again, give these things a good trial run. I say at least 6-8 weeks. It takes time to really see the benefits and repair issues happening within the body.

    Give this blog a look because some of the things listed here may work. Our daughter is not autistic, but does have a neurological disorder, and the things this mom has shared have helped us with her sensitivities as well. She talks about treatments, supplements, eliminating toxins, allergies, etc.
    http://crystalchild.wordpress.com/about/

    Eliminating toxins is a big one! Throw out the fluoride toothpaste for example.

    Find a good chiropractor or Touch for Health (acupressure) practitioner. They can do amazing things to heal the body. Try to find one that will treat for as low as $20 or even free...ask around, even online, for referrals.

    Good luck and if you need more help let me know.

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  4. I am on state assistance and do not vax in Indiana. I wonder who told her she had to vax to remain on assistance? My big problem with being on assistance and not vaxxing is like above stated, I only know of a few Dr.s who take the unvaxxed, and they werent accepting my insurance at the time, or werent accepting new patients if they do. My sons haven't seen a doctor in 9 months because we still havent picked a new doctor. I have heard, though, the idea of signing in for a family doctor instead of a ped, as they arent nearly as vax happy, and I'm currently on the lookout for a good one in central Indiana. I haven't searched too hard though, because my kids don't go to the doctor on a regular basis, as is your case. But you may try that idea? And you can definitely opt out for religious reasons in Indiana, regardless of your insurance status.

    ((hugs)) to you momma

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  5. Thanks to all to have given advice, I am working on cutting dairy and gluten out of the diet, I would much rather wean the boys from something rather than take it away, they are restricted from a lot in life anyway. Like I had said earlier in my message was that I allowed Owen to get a flu shot in January, he has had 2 sinus infections since having the vax, I am finally starting to realize these things are most likely tied together at least for him. To answer a question about the requirements of indiana medicaid, my case worker sent me the information stating now that the state requires all children to get vax to recieve insurance. Medicaid however does pay for chiropractors in full, this is a route I am investigating. I hope to become independant of the states insurance within the next year. I have reviewed some of the legality of our situaion, and because the Peditrician did not make a full diagnosis but only an observation of her thoughts of me it is within the law. What a crock of **** I really believe that people even doctors should be held accountable of what they put into medical files, without a loophole. I am not religious at least not in the way with that I feel justified in refusing shots because of I will look into the other options. Thank you for all of the links it will take some time, but I promise to read them all.

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  6. Try searching for a DAN doctor or holistic nurse. My son had classic symptoms you describe and found out from another form of allergy testing he was allergic to MANY foods. (unlike the testing done at a reg allergist's office) That cut a lot of the problems- his immune system is still very fragile but over the years it has improved. Diet played a huge part of the sickness and dev. delays. He has reg. testing done every 6 months because the foods allergies go up and down. Crazy! I almost want to say that if he eats the same thing too long, he becomes allergic to for awhile. We pay for everything- nothing is covered by insurance except for prescribed medicines (copay).

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  7. My children both were on Indiana medicaid and unvaccinated. My youngest never had a Dr say it was ok. My oldest didn't for 3 years of the time he was on it, but eventually did. I wouldn't be afraid. I simply wrote a personal religious exemption and that was the end of the issue. I wish you the best.

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  8. if Dr Donald Baird still accepts medicaid he is AWESOME! he is a DO. and is somewhere in the Indy area. he moved from where we used to see him at but we had moved as well. I would search him out.

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