Discussions By Condition: I cannot get a diagnosis.

Immune Deficiency???

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: My Twins
  • December 11, 2007
  • 01:52 AM

I have 16 year old identical twin boys with constant medical problems. We have seen several specialists who were unable to give us a diagnosis. Our current immunologist started treating the boys for common variable immune deficiency. The boys started IVIG in June. They have had headaches, a stiff neck, and rashes from the treatment. They got so sick we discontinued the infusions.

The boys were born at 32 weeks gestation with complications from maternal sepsis and placenta previa. They were on respirators for about 1-2 weeks. They had acute febrile illnesses as infants. At times they had febrile seizures. They had continued ear infections, sinus infections, and diarrhea episodes throughout childhood. Most illnesses were managed until the boys reached puberty. Infections started getting more severe. Some infections included pneumonia, micoplasma pneumonia, bronchitis, entamoeba coli,, cryptosporidium, and cellulitis.
The boys have joint pain and night sweats. Their eyes are always very bloodshot as well. Their hands and feet feel ice cold and are a bluish color. They are constantly sick and infections last for weeks. In the past 9 months, one twin has had recurrent mouth ulcers.

The boys have neutopenia and leukopenia along with low IGM and low IGA. The IGG level fluctuates. It was discovered that they have a Factor VII deficiency too.
They have delayed healing of wounds and stria across their backs. Both boys are very tall and thin with hypermobile joints. They have been evaluated for Marfan's Syndrome. ANA's are sometimes negative and sometimes positive. A geneticist evaluated the boys for some connective tissue disorders also.
The doctors are not sure what is going on.



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4 Replies:

  • Ehlers-Danlos? How is their skin?
    rad-skw 1605 Replies
    • December 11, 2007
    • 10:03 AM
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  • They have delayed healing of wounds. Their backs have 12 stria going up the lower back all the way to the shoulder blades.They are very deep and red in color.Scars that required stitches are very thin. They took several weeks to heal.Skin is pale but overall it is okay.I just received a report from the geneticist. He mentioned possible Ehler Danlos also. I need to read up on this. Would this explain the frequent infections?Thank you for your help.
    My Twins 1 Replies
    • December 18, 2007
    • 03:04 AM
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  • Please look into Traditional Oriental Medicine (Acupuncture) and into NAET (naet.com) - these modalities can support their systems and even resolve some of those conditions that affect their quality of life. They are compatible with the help that they are receiving right now, so you don't have to worry that there might be a conflict.Best.
    Eatafruit78 960 Replies
    • December 18, 2007
    • 03:13 AM
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  • Absolutely, I agree with EataFruit. Traditional Chinese Medicine would most likely diagnose these twins with having constitutional Kidney deficiencies due to the trauma of their births. This in turn can make their Lung function weak, causing them to have repeated infections. A qualitified acupuncturist and herbalist can diagnose each twin individually, and find a treatment plan that works for them. The Spleen is a very important organ that is responsible for wound healing, energy, and digestion. Sorry to say that Allopathic medicine is very poor when it comes to treating immune compromised patients. And when your docs don't know how or what to treat that is the best time for Chinese Medicine IMO. We have a completely different system of diagnosis and can really make a difference. Please research this! Best wishesDOM
    acuann 3080 Replies
    • December 18, 2007
    • 03:29 AM
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