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#1 of 15 Old 03-02-2014, 04:34 PM - Thread Starter
 
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I have a two and half year old daughter who has had a very bad year and half. It started October 2013, multiple cases of strep, ear infections, pnuemonia, RSP, UTI and sinus infections. In Jan 2014 she became so ill, that her oxygen levels were in the 50's, and her RSV turned into a bacterial infection in her lungs which spread to her blood. She was then life-flighted to Vanderbilt Childrens Hosptial, where at that time the outcome was unknown. She was in the PICU for 7 days on breathing machines, medicines, tubes...the WORKS. They finally got her better after 14 days in hosptial we came home, with a very fragile and anemic little girl. But it didnt end there. Since then, she has had pnuemonia, RSV, Strep, ear infections, rotovirus, UTI with ecoli in her urine, i mean you name it she has had it. She takes several medicines a day. She had surgery in June 2014 to remove tonsils, adenoids, tubes in both ears, scopes and biopies. Found out she has acid reflux disease which we are treating with two seperate meds and not much as changed. Since her sugery in june, she has had 8 cases of Strep (with NO tonsils), 7 Ear infections with tubes still in place, rotovirus, flu (with flu shots), uti's, and the list goes on and on. They have tested her for numerous things, CF neg, Immune disorders all negative, nothing has been linked to as to why my daughter stays sick. She has 8 specialst at Vanderbilt. We are all just stumped as to what to do next. The latest thing we have found out was that her kidneys produce phosphorus crystals, currently waiting on the extended results of those test. We did allergy testing, no enviromental allergies, but she is allergic to Dairy-we cut all the dairy out. I'm just lost. She we goes to Vandy about every 3 weeks for check ups and testing and we are just confused and did not know if there was any other Moms out there with anything similar. Please Help! 

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#2 of 15 Old 03-02-2014, 06:30 PM
 
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I am completely grasping at straws here, but have they looked into organic acidemia? My cousin has a rare form of it and was very sick as an infant until it all got sorted.

Otherwise, my heart just goes out to you and I hope you get some sort of answer soon.
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#3 of 15 Old 03-04-2014, 04:46 PM
 
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I am so sorry you're having to deal with this, it must be very stressful to not have any answers!

I don't have any answers for you except to suggest doing some research on cultures foods, like kifer (which you can make non-dairy.) As long as there is not a medical diagnosis causing such infections it appears her poor immune system needs some help/support!

Look at http://www.culturedfoodlife.com I have seen amazing things happen when the gut is supported and allowed to heal thus providing a stronger immune system.

It may be that for what ever reason her gut couldn't handle the antibiotics/medications and just has no defenses for her (baring no medical diagnosis of course.)

I have a few other contacts that work with gut health I can track down if you're interested. One is a research scientist whose wife is a lactation consultant smile.gif

I'm rarely on here so if you have questions please feel free to email me at rachelle.dcvc at gmail

I hope you find the answers your sweet baby needs!!
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#4 of 15 Old 03-04-2014, 04:47 PM
 
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Have you looked into a mitochondrial disease specialist? I don't know a ton about mito diseases but I know they can cause all kinds of strange symptoms and issues like what your daughter has had. Look up this group called Baby(food) steps on Facebook. It's run by my friend Kristi who has a daughter with a mitochondrial disease and is extremely knowledgeable and sweet. If she can help you in any way I know she will.
Best of luck to you and your baby.
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#5 of 15 Old 03-04-2014, 04:53 PM
 
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I am sorry, it must be very difficult.
Did anyone look into an IgA deficiency? IgA is the immune globulin that protects the mucous membranes from virus, bacteria and other pathogens.
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#6 of 15 Old 03-04-2014, 06:12 PM
 
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Im so sorry, poor little button greensad.gif It sounds to me like a full blown autoimmune reaction. I know this is a hot button issue but I speak from experience. Is she vaccinated? I joined a really helpful group on FB to gather info and treatment tips. Let me know if you want the info.
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#7 of 15 Old 03-04-2014, 09:00 PM
 
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I am so sorry  -- how perplexing.  The only thing I can think of off the top of my head is....gluten.  If she cannot handle dairy then there is a strong chance that gluten is also the enemy.  They often go hand in hand -- regardless of whether or not you have had allergy tests done, I would remove all of it and see what happens.  I have also heard that going paleo has been tremendous for one's health....esp. if MDs are stumped.  It's worth a try to remove all gluten and see what happens...but, you will need to be persistent and keep at it.  Lots of hugs to you and your family.

 

PS eggs....?

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#8 of 15 Old 03-05-2014, 08:20 AM
 
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I also wanted to add that if you haven't gone the naturopath route....now might be a good time.

 

After years of feeling awful, I finally sought the help of a naturopath.  I learned so much and it was the best gift I could have given myself.  Currently I am working with a holistic MD since my beloved naturopath moved out of state.  She taught me enough that I could finally take care of myself. 

 

I used to have throat infections like crazy.  I do have my tonsils but I did have surgery for my adenoids and I did have tubes in my ears.  Before going gluten and dairy free I was also very anemic.  My ferritin was under 10.  No MD could have gotten me to where I am today.  They helped, but the naturopath really filled in everything the MDs over the years missed or did not understand.

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#9 of 15 Old 03-07-2014, 12:33 AM
 
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My recommendation is similar to Pepin's: find your daughter a holistic healthcare expert. I personally recommend an Ayurvedic physician. Ayurveda had thousands of years of track record behind it and can work hand-in-hand with Western medicine. It is very individualized, holistic (whole body, whole lifestyle, not just symptoms), and finds root causes, in a different context than western medicine. I can recommend two pediatric Ayurvedic physicians if you PM me, both of whom have MD degrees as well.
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#10 of 15 Old 03-07-2014, 11:49 AM
 
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I can't give any advice as to what it could be, but it sounds like she could use a good immune boost and healing/resting time for her body.  There are lots of things I could recommend you do from a natural/holistic perspective, but you should really take here to a local naturopath, chiropractor, and herbalist.  Together as a team they can evaluate what her body is doing and then begin a protocol specifically for her bodies needs.  Noone in my family was sick once this winter, even though everyone around us was sick numerous times.  And I can't say that lightly because I have always had a horrendous immune system and always had regular bouts with strep throat, thyroid, and digestive disorders.  But I began my healing with herbs, now weekly see a chiropractor, and am friends with holistic health practitioners that have helped me realize what was breaking my body down.  Removing gluten and dairy can be a gigantic start towards healthy living, so I would start there while you are looking for your holistic health providers.

We will be praying for strength and wisdom for everyone involved in your situation. 

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#11 of 15 Old 03-08-2014, 05:48 PM
 
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I am so, so sorry that your family and daughter are having such an extremely difficult time.  This seems to me to be far, far out of the bounds of a less-than-optimal immune system, food allergy, run of the mill autoimmune disorder, or anything else along those lines. 

I highly doubt that there is a magic bullet in any alternative medicine - and before any other responders jump down my throat, let me just say that I have a number of autoimmune problems (Crohn's, and a host of satellite disorders) and allergies AND I have truly been helped by a naturopathic practitioner.  Helped, not cured.   But my issues, even at their worst, were no where near what your little one is suffering.  I should also say that the results of the (controversial) IgG test I was given by a naturopathic dr. yielded very uncommon food intolerances - beans, oats, among others, which, when removed from my diet, helped enormously (again, helped, not cured)  --- but my issues were NOT gluten, etc.  (The usual suspects.  In fact, I fared much worse when I attempted gluten and dairy free diets, as well as vegetarian diet, than otherwise.)  Don't assume anything, and I wouldn't restrict a diet for a child who's already so fragile without some clear evidence for doing so.

I have a 7 mo. old (you can read my previous posts) who, as of 2 mo. ago, was allergic to every food - she also gets sick/ infections pretty frequently, as do I; (again, no where near what your sweet one is dealing with) so, at least in our case, there does seem to be some link to allergies - immune fighting ability, but again, please be leery of magic bullets.  (E.g., "just use this probiotic," "just take this out of her diet," "just have an adjustment done," "just use this homeopathic remedy," etc.)  It can sound so good when you're desperate, but when you're child is ill, and especially when so very ill, you need a very well-rounded approach, which it sounds like you have and are consulting everyone in your power, so good for you - know that you're doing the right thing.

Have you posted your question on other, specifically health-related boards?  Pediatric health boards? (Worth a shot, if you haven't.  That was more helpful for me for my daughter than any kind of health care I sought for her - no dr., etc., had ever seen the same problem to the extreme that we were dealing with.  But other parents online DID have the same experience, and were able to point me in the right directions.)

 

More importantly, what I wanted to say was this: I have an in-law, who, as a child, was almost constantly ill, particularly with pneumonia and ear infections; living in and out of the hospital. Eventually, somehow it was discovered that he's somehow lacking part of his immune system (this is the layman's explanation I was given,) and so now he regularly receives "infusions" of antibodies and does much better.  Still prone to pneumonia, etc., but a much better quality of life.  I will be emailing his mother in the next few minutes, and see if I can get any more details - more scientific/medical terminology so you can phrase it more intelligently (!) to your doctors, or know whether it's something they've already looked into.  I'll get back to you as soon as I get a reply.   Hang in there.  Thoughts and prayers. 

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#12 of 15 Old 03-10-2014, 08:02 AM
 
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Here's the reply I got back:  I would assume your little girl has seen/ is currently working with immunologists, and that this sort of scenario has already been looked into, but if it's worth anything, here's the story:

 

 "After birth and despite the fact that I was nursing him he continually developed colds which would lead to bronchitis  or pneumonia.  He seemed unable to fight off upper respiratory infections.  It was frustrating.  We were referred to a physician at Stony Brook University Hospital where a new area of study in the field of immunology was beginning.  It was then that he was diagnosed with IgA deficiency.  You are born with five immunoglobulins.   IgA is responsible for protecting the upper respiratory system.  In some cases the deficiency can  also cause diarrhea but not so in his case.  So...whenever he began to show signs of infection he was put on an antibiotic.  

 
There have been many advances in the field since the 1970s.  You can check out IgA information on the internet.  It can be diagnosed through a blood test.  Best to see an immunologist familiar with these problems.
 
It is thought that sometimes with the onset of puberty or later some people begin to  produce the IgA.  Unfortunately, it was not the case.
When he was in college in North Carolina he was referred to a Dr. Rebecca Buckley at Duke University who was well-known in the field at the time.  He began to receive  monthly infusions of IgG to help compensate for the lack of IgA.  It was considered "experimental" at the time and I had to fight the insurance companies tooth and nail for over a year but finally won. It now is a recognized treatment for those with severe cases.
 
He has no known allergies."
 
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#13 of 15 Old 03-10-2014, 12:30 PM
 
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That is interesting Ionicera. I had a dog with infection after infection and finally diagnosed with a hormonal imbalance that cased her IgA, IgG and IgM production to be low. Once we corrected the hormonal imbalance her immune globulins, all of them, rose back to normal level. It took a year but once they were stabilized at normal level, they remained that way for ten years. She was very healthy during that time, except as she became geriatric she did begin acquire some infections. All in all, her dysfunctional immune system was due to a thyroid and adrenal imbalance which was easy enough to correct.

The low IgA really took a toll on immune function though. It protects everything from eyes, respiratory system, gastrointestinal system, down to the urinary tract. Once it rose to normal level she was like a new dog.
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#14 of 15 Old 03-10-2014, 04:39 PM
 
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That is really interesting.  Maybe this will also be a lead for the OP. 

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#15 of 15 Old 03-22-2014, 06:46 AM
 
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My heart goes out to you and yours in this time of finding solutions for your little one, I know it can be a bit overwhelming sorting through the information out there. It looks like you have come to the right place for support:)

Have you looked into Homeopathy? It's gentle, highly effective, safe for any age, doesn't interfere with conventional medicine and has been around for 200 years. It works beautifully in triggering the body's natural healing response. My suggestion would be to find a Classical Homeopath to help restore her overall health. The following is a link to the National center for homeopathy, they are a great resource for those who are new to Homeopathy. www.nationalcenterforhomeopathy.org

If you would like to pm me with any questions about it or finding a qualified homeopath, I'd be happy to chat with you about it:).

I hope this helps in finding the best fit for her.

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