prepping for tomorrow's big appointment

We had an appointment with our biomedical doctor on Tuesday morning.  She answered several questions I had in regards to Hunter's IgG levels, which have remained high for certain viruses. 

She didn't think Hunter's IgG levels were indicative of needing anti-viral treatment; she felt that it was a reflection of his overall ability to detox.  His body creates antibodies in a complete over-response, almost like having a super-immunity to them.  Since 80% of the immune system is in the gut, she felt there were other more natural options instead of treating the Coxsackie, HHV6 with antivirals, and the Mycoplasma with an antibiotic.  She had recommended IGG2000, which resets the immune system in the gut, or GI Protect (which has IgG) by Xymogin, which would help with strep die off, yeast die off, and increase the good flora. 

I told her of our recent steroid burst, and she reiterated the fact that steroids are not healthy long-term, but after seeing the IOP data, she agreed that there seemed to be an inflammation issue.  She said we really needed to find things to support his immune system.  She recommended BioCidin- it is an anti-fungal, anti-bacterial botanical compound that was designed to support the entire immune system.  It has been clinically and laboratory tested for effectiveness for over 20 years, and has proven very effective long-term for children on the spectrum (who have accompanying GI issues).  It included support for detoxification and immune function, and is used as part of a program to address biofilms and resistant conditions.  It treats lyme, candida, clostridia, and the research shows complete eradication of these issues. 

Our last topic of discussion: IVIG.  I really wanted to get an opinion of a more natural practitioner, who has worked with some of the top doctors who treat PANDAS in our area.  I really thought she would say an affirmative "no" to doing IVIG.  However, I was wrong...

Due to his autoimmune reactions that are clearly present (lingering viruses, Vitiligo, PANDAS, etc), and his case history, she felt like IVIG could be the best treatment.  She said she would talk with Dr. G and give him her opinion and her best protocol for post-treatment:
1) IVIG
2) Biocidin (2x/day), 1 capsule each time, to provide anti-fungal, anti-bacterial protection
3) IGG 2000 or GI Protect- as maintenance instead of a prophylactic antibiotic.
4) Allegra- it doesn't cross the blood brain barrier and it could serve as an overall dampening of the overzealous immune system response. A mast cell inhibitor would reduce the amount of histamine; it could potentially prevent a reaction in the body which inflames the part of the brain that is affected, or causes tics.

OK.  One doctor pro IVIG.

Today, we went to see our pediatrician who has been with us since Hunter was born.  She knew him pre-initial insult, and I copied directly her statement from one of the records I collected from their office: "Discussed development.  Child appears to be speaking very well, and developmentally appropriate in every aspect.  I see no concern for AU or other neurodevelopmental problem."

And then the whole trend of illnesses....

12/7/09: Complaint: blinking and zoning out.  Comes out of it if mother calls name.  No fever.  Did take Zpak and had double OM 2 weeks ago.  For 5 days has had blinking spells.  Almost as if child is dizzy or can’t seem to focus.  Saw ER doc out of town and first time said OM, second time said ears were fine (assuming strep here) DX: OM (Acute), Tic Disorder, Unspecified; recommended observation for time being.

12/14/09: Well child visit.  No issues on MCHAT.  Declined H1N1.  Vaccines: Hep A.  Declined MMR. Blinking diminished.

12/23/09: Complaint: Tic, dizzy when eats.  Having staring spells.  Activity stops, stares, then blinks a few times as if he is coming out of it.  Seems to be walking on toes more.  Speaking a lot more- mom says over last week vocab has made leaps and bounds.  No fevers.  Eating well, not irritable, sleeping well, no other part of behavior has changed.  DX: Tic disorder, Convulsions/Seizures; referred to Neurology to get EEG completed.

2/6/10: Complaint: ear pain. 1.5 weeks of congestion, waking up more last 2 days. DX: OM, URI (upper respiratory infection). Meds: Ceron-dm, Omnicef.  Mom chose to watch since it seemed mild/early.

3/27/10: Complaint: Left eye redness X3 days with watery discharge today.  Raised area on eye.  DX: Conjunctivitis; start antibiotic eye drop is develops pus/discharge

4/2/10: Complaint: FU previous OM, left eye still red (was diagnosed with viral pink eye last week), pulling at ears. DX: Corneal Abrasion.

6/2/10: Complaint: fever.  Max temp 103, 2 days with fever.  Associated symptoms include nasal drainage, crying and decreased appetite. Took to urgent care 2 days prior with neg eval; rash on bottom, palms of hands, and soles of feet; had same rash 2 previous episodes with OM (with amoxycillen and Zithromax). DX: Fever, Viral Syndrome or infection; strep screen negative. Tonsils enlargd 2+

6/14/10: TWO year Well check.  Bowels normal.  Couple concerns on MCHAT.  Red throat, ulcers on both cheeks and post pharynx. Red water blisters on both hands and feet. DX: Hand/Foot/Mouth- viral illness.  Sibling also had HFM blisters.  Deferred Prevnar 13 until pt well.  Dr notes: “Discussed development.  Child appears to be speaking very well, and developmentally appropriate in every aspect.  I see no concern for AU or other neurodevelopmental problem.  However, since mom so concerned, asked her to f/u again in 6 months so we can discuss development again.  Saw Denise Wooten who told her he is quirky but not autistic.”

8/23/10: Complaint: Rash on bottom X1wk.  Had cast on left leg and scoots on left buttock.  Recommended using Aquaphor, Altabax 1% to bottom.

10/13/10:  Complaint: Coughing X2weeks, runny nose, loose stools, cast off two weeks. Throat red, tonsils 3+.  DX: Strep, URI.  Given Cefdinir.

11/8/10:  Complaint: Fever (102).  Coughing and nasal drainage.  Chills.  DX: Strep (quick strep positive). Given Clindamycin (75mg/5 Ml)

12/14/10: Complaint: Rash, Eye drainage, runny nose with cough.  Rash started on chest, then to back, seems itchy, no fever but felt warm.  Cloudy rhinorrhea.  Patchy raised rash on upper chest and back. DX: Dermatitis, URI, Conjunctivitis.

1/13/11: Complaint: Ear pain, vomited at night, fever. Throat not red. DX: OM. Given Cefdinir.

 

I discussed with Dr. V today all of my concerns, recent specialist visits, and the main topic of discussion: IVIG.

At first, it seemed that she didn't think IVIG was the best idea.  When I had asked her about it in the past, she had said that she thought we should save the money and apply it to behavioral therapy.  But now that we have been down this road of specialists, developments, and documented autoimmune reactions, I think she may have had some other thoughts. 

After examining him today, she noticed that his Vitiligo had spread, and reviewed all the labs.  She looked through the data from the IOP and the dramatic decline in behaviors after the steroid burst.  She said she would call Dr. G and discuss Hunter's development. 

 After a trying appointment with lots of tears, outbursts, and refusals, as she was walking out the door, she said, "I am thinking that if you don't do it, you may always wonder "if."

 

And now we have two doctors saying to go for it.

My anxiety, my fears, my uncertainty of what lies in the future is so overwhelming.  My eyes have overflowed so many times when I realize how real this is about to become. 

When we were leaving the IOP yesterday after Hunter's last session (if he goes inpatient soon), I told Hunter to give Ms Hazel a big hug, because we might not see her for a bit.  She said, "Oh, no- I will definitely come to the hospital and see him."

Just hearing "hospital" made it seem, again, so real. 

I said I was looking for signs to make the right decision, but I didn't think that meant real, billboard type propaganda.  But driving home from his program yesterday, I noticed two signs that had somehow never jumped out at me before.   One said, "Infusion," the name of a church.  Another sign advertising for blood donation said, "You call it a donation.  We call it a life changer."  And lastly, when we were waiting at a stoplight, a truck turned left as our light was green, so we had to wait patiently before moving ahead.  There, painted bright on the side of the truck, was the word "RECOVER."

All the signs, both concrete and indeterminate, have crossed my path this week.  I have two doctors giving me their blessing as far as the proposed course of treatment. 

 

But yet I am having a hard time knowing if we will actually be able to sign the consent. 

 

Please, please, please say a prayer for us tomorrow.  I know our condition is not life-threatening.   I know that my son will make it, even if we don't do the proposed procedure.  I know that we will adapt and accept our "normal."

But if there is a chance, a glimmer of hope that we can bring our son back to us; fully back to our conversations,

to our playtime,

to our family,

then so be it.

 

Dear God, Help us find it. 

Help us find the answer to the question from the past three years. 

And help us find our son once again.