Discussions By Condition: I cannot get a diagnosis.

still searching for answers...

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: haysmama
  • September 4, 2007
  • 06:44 PM

I have five children, four boys and one girl. All of our boys started out normal in size, however they soon drop in the charts. We have experienced weight loss, slow gain, no change for the first 18 months to 30 months in their growth. Developmentally, they are usually up to par in all areas, except some had speech delays. We had ear infections, bronchial infections, asthma, and reflux in all of them. We discovered in son 3 that he had velar movement issues. More info on that, he was the slowest in language development, although ahead in every other area. We qualified for speech therapy, due to almost apraxic conditions, and during this time we notcied when he said "ahhh" there was no movement in the back of his throat. This improved with time and therapy. We never had to actually go to an ENT, although this was set up. Before therapy, he could make no guttural sounds at all. He is still a little nasal and breathy when he talks, but is now ahead in his overall speech. As a matter of fact, he taught himself how to identify the alphabet by 2.5 yrs! He is now trying to read at 3.5!
However, now our 2 yr son is showing some of the same signs. He is now gaining better, but still small for his age. We get minimal weight gain, if any at each visit, and he still has some reflux problems, but most of all, there is almost no movement in his throat when he says "ahhh". :eek: :confused: And he always yells instead of talking!!!:)
The speech therapist feels, as do we, that if two in a row have had this problem, then it is a possibility that there was some of it in each child, with differing degrees in each one. The oldest three boys did outgrow these symptoms, at different times, when they started chewing and swallowing whole foods all the time and speech really began to develop. (0ur last ped did not even know this was an issue they could have!!!)

We recently changed peds, since our last ped said this was due to not feeding our children properly or enough. She labeled them organic FTT, and then told me to have no more children, since I was already in over my head! :mad: We even went into the hospital to let her see. We were right, she was wrong, and she still had her opinions. I kept charts, journals, diapers, and I really got nowhere, and now have a somewhat jaded view of the medical community.

Can anyone here identify with the symptoms and any answers....Sorry for the super long post, venting.... The only thing I found is pharangealpalatino something or other and the symptoms seem to fit. We have ruled out CF, malabsorption issues, and the basic genetic disorders tested for at birth. Please help if you have ideas!!

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8 Replies:

  • I have an idea...let me know where you live and I will help you find NAET/Bioset therapy for you and your children. What are mom and dad's symptoms? I know there are some. This therapy is non-invasive and works. I have had 6 treatments and I'm heading back to work after being told I would never work again. I am a nurse and I was very skeptical but desperate. Please find a practicioner of either and take your whole family beginning with the illest child. I am very disheartened with western med. After all, a nurse for 15 years and no doc could figure me out? Ridiculous!! www.naet.com www.bioset.net read the testimonial pages...I just wrote mine the other day. I had many of the same symptoms as your children. Now I don't. it's that simple. wishing you well...mommy cat:)
    mommy cat 1654 Replies
    • September 4, 2007
    • 08:07 PM
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  • We live in MS, and we even have an allergist that we saw with some of the children. What we discovered is a rice "sensitivity" in one of the boys, and at the time we first had him tested, there was also peanuts, soy, and dairy. We are now able to give him all but rice. He also has reactions to some types of fireants. Another child has the dairy issues, but no other specifically noted. Sensitivity is used as no skin reaction happened at the allergists office, but our observations are that he develops cold like symptoms, ear irritation, eczema, stomach problems, and then a very strange "bite" looking blister on his shoulder/back area. It looks initially like a spiderbite, but then it pops and it appears the tissue is being eaten. EEEEWWWWW If he even sits on a grain of rice, he gets what looks like a burn surrounding the area he sat on it. We have tried to expose him to rice on a very short term basis a few times, and the reaction is less now, but still there. I have skin sensitivity to strange things. Soap, other people's sweat, certain spices, foods, even shampoos. These are fairly mild, mostly, but some soaps cause eczema to form from the top of my feet all the way up to my hips that itches and if scratched, can lead to bleeding. All this from one or two exposures. I also have asthma, and daddy did when he was a child. We tried to rule out allergies, and mostly have on some things, but even when seeing the allergist and avoiding the causes, we still had weight loss or slow gain in the same children. I think I heard of NAET from a digest I was on, but more about a diet change type of NAET. Is there a diet change that you use to control and eliminate the allergens involved in NAET? haysmama
    haysmama 4 Replies
    • September 4, 2007
    • 08:36 PM
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  • forgot to mention, this starts at about 4 weeks old, not specifically at birth. they are all nursed exclusively for the first several months, but had to add formula to see if this affected weight gain. it did, some months. sometimes there would be an ounce of growth instead of none or weight loss. however, the oldest was nursed solely, until we added foods, with the same growth pattern. haysmama
    haysmama 4 Replies
    • September 4, 2007
    • 09:06 PM
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  • yes, this is a pattern and patterns happen for a reason. What are your symptoms? What are your husband's symptoms? Did you have all of the children vaccinated? was it done at a very early age?
    mommy cat 1654 Replies
    • September 4, 2007
    • 11:01 PM
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  • we do have them vaccinated, and at the recommended times. I have ibs symptoms and hormone deficiencies, but they come and go. as long as i maintain a healthy diet, instead of grazing and junk food continuously, they stay at bay. this is why they feel it is feeding related. however, our new ped feels that she will have a better grasp of what is causing the problem if we have a new baby, lol, so she can see first hand what is going on. it does appear that the muscle issue has played into this, as there is really little to no movement in that muscle at appropriate times, and the only reason that makes less sense is that this usually is a sign of something such as cystic fibrosis or cerebral palsy, or even a cleft palate. cleft palate was the biggest concern when we discovered this during therapy, however, since the youngest one is developing ahead of his peers in speech, his volume levels and muscular issues do not qualify us enough for therapy. we had a brain stem auditory response test done when he was 5 months old, since he was not responding to sound at all. he passed the test, but not at 100% of where he should be at that time. he does hear, but he does not always respond. it is random when he does. however, his speech development points to him hearing very well. he is between 2.5 and 3 yrs in his speech, and he only turned 2 last month. he would have to be at least 3-6 months behind to qualify. they tested him for excessive iron, low iron, and a few other things that currently i do not remember. all the results were negative.
    haysmama 4 Replies
    • September 5, 2007
    • 04:11 PM
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  • haysmomma, here is a link for the NAET map. I believe there are practicioners in AR,TN,LA and AL Please read the NAET testimonials page, if you haven't already. This therapy is helping people around the globe. I am but one story...but it is a miraculous one!! Best to all of you, mommy cat
    mommy cat 1654 Replies
    • September 6, 2007
    • 00:00 AM
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  • I feel so bad for what you must be going through. I have a daughter who just turned 6 last week. She had severe, chronic consitpation since she was an infant. We finally took her to a Children's Hospital right before she turned 3 years old. They tested her for CF, Celiac's Disease, etc. etc. etc. They told me to give her lots of fiber (she was eating between 25 & 30 grams per day). They put her on Glycolax which I hated giving to her, but if we missed it for even one day she would be completely bound for a week and require several enemas to bring forth a BM. They also put her on antibiotics for Small Intestine Bacterial Overgrowth. She was lethargic and tired a lot. She was very anxious and nervous all of the time. FINALLY, in mid July 2007, a friend referred me to a BIOSET Practitioner. We went and got started right away on Probiotics and Digestive Enzymes. Then my daughter began receiving the Bioset treatments and she got better with each one. After just shy of two months we have her down to taking her Glycolax once every 5 days! My daughter is a different girl today than she was two months ago. She is so much happier, so much more energetic, and so much less anxious and nervous. I have heard WONDERFUL reports from friends who have tried it as well. If you have a BIOSET Practicioner near you, do yourself and your children a favor and try it! I always felt like the doctors did not believe me about how healthful my daughter's diet was. I always felt like they thought I was to blame. It feels so good to take her somewhere where they really understand that as a mother you are trying to do everything RIGHT for your child.Good Luck and God Bless!Bonnie
    Anonymous 42789 Replies
    • September 7, 2007
    • 06:37 PM
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  • Dear Bonnie, thank you so much for sharing your story with us.I came to this forum in March. The only help I found in years was right here.Someone recommended NAET. I searched locally and found a Bioset practicioner 20 minutes from my home. I was in luck.I have had 7 treatments and all of my severe symptoms of chronic fatigue syndrome and fibromyalgia have disappeared.Last year I was applying for SSDI and now I am off to work for the first time in over a year. I am a nurse. I know a lot of nurses who are experiencing many similar symptoms as mine. I'm sure it is no coincidence.I am so happy for you, your daughter and your entire family. Now you will be able to live your lives the way it was intended.God Bless....mommy cat
    Anonymous 42789 Replies
    • September 8, 2007
    • 00:05 AM
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