Mother (lay Investigator) Seeking Answers Re: Son's Multi-System Dysregulations

slink01234 at aol.com slink01234 at aol.com
Wed Sep 16 01:52:56 EST 1998

Dear Doctors and other Professionals:

I am the mother of a year old boy who has autism, intractable epilepsy
(unresponsive to anticonvulsants, Ketogenic diet), diet-treated coeliac
disease, a history of pathogenic intestinal overgrowth, numerous food
allergies and intolerances, asthma, Carnitor-treated Carnitine deficiency,
and recently identified "partial T cell dysfunction of undefined etiology"
with low IgA and IgG response to Tetanus and E-Coli, low PHA response, and
defects in antigen processing.

I had a full-term, apparently healthy pregnancy, and Oliver weighed 8 pounds
2 ouunces at birth. Soon after, he developed chronic, recurring ear
infections which antibiotics and tubal placement alike did nothing to
alleviate. He was fully immunized during times of such infection. I believe
he had an adverse vaccine reaction in particular to the MMR and DPT vaccines,
as his seizures (initially myoclonic, now frontal lobe psychomotor and grand
mal) began shortly after his 4 month baby shots. I had not been able to prove
this suspicion.

Oliver has been deemed suitable for IViG treatment, based upon his
immunologic abnormalities, ambiguous as they may be, but I am currently
pursuing a line of testing for him which may lead to the identification of
root causal or contributing factors to his many challenges. Oliver's
immunologist thankfully conducted the following line of testing at my request
last Friday:

Cytomegalovirus IgG & IgM
Epstein-Barr virus IgG & IgM
HHV-6 titer
Herpes type 1 & 2 IgG & IgM
Coxsackie virus titer
Herpes Simplex Virus IgG & IgM

I've been reviewing as much of the Medline and medical textbook literature as
I can comprehend, material pertaining to herpes-induced encephalitis, and to
the cross-placental action of CMV, EBV and HSV. I myself have genital herpes,
but Oliver was delivered via planned C-section to ensure, as I was assured,
his protection from the herpes virus I carry. Only recently did it occur to
me that this virus (or perhaps another of the above listed for which I have
not been tested) may have crossed the placental wall, thenceforward
interfering with brain development and function. I've also read that mothers
with HSV, in particular, who produce high levels of IFN during pregnancy are
more likely to protect their unborn children from the trans-placental effects
of HSV than mothers who produce low or non-existent levels of IFN during
pregnancy. This leads me to believe that I need to have my IFN level checked
promptly, as I am 13 weeks pregnant at this time. I have only the barest of
medical coverage, however, thus my doctors have been unwilling to do any
testing such as I have already recommended, including testing for the above
viruses. I should also add that I am HIV-negative.

I am certain that those of you who communicate on this newsgroup are
professionals and as such are not obligated to respond to the plea of a
mother in search of answers, but if there are any of you who are so inclined
to respond, please do so. I am most anxious, in particular, to identify the
root causes and conditions resulting in my son's intractable epilepsy. He is
a marvel of a child, most agile, verbal, affectionate, and bright,
considering his disabilities, but the seizures and the medicines ineffective
in treating them are causing numerous behavioral disturbances which impede
his continued progress. He himself tells me, "No more big seizures, just
little seizures," so it is clear that he wishes for relief for them.

If any of you can affirm my present path of investigations, or suggest
alternate courses of investigations, I would be most grateful. I am a woman
who lacked all aptitude for the sciences and mathematics, a woman who could
not so much as pass highschool biology, and yet I have educated myself to
this point in hopes of bringing some relief to my son. I should also add that
it was through my investigations and advocacy that Oliver was tested for
Coeliac disease and Carnitine deficiency. I simply matched presenting
symptoms to possible conditions associated with those symptoms, and on both
counts, my suspicions were confirmed through testing. I wonder that his
previous physicians did not think to do the same.

I thank you for your time and interest. I appreciate any guidance you may
choose to offer.

Hillary Hays
Oliver's mother

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