Medical Update on Little Brother

Background:

We have had concerns about Little Brother’s immunity or immune system and health, on a low level since Little was practically a newbie.  I remember talking to my mom when he was not even crawling yet about how he was sick so much more than my first one had been, and how when he got sick Little took so much longer to recover.  At 12 weeks Little Brother spent a week in the hospital due to RSV; he really never got dangerously ill but he simply got sick and stayed sick so long he wore out and was too tired and was not recovering.  This has remained his pattern.  He gets sick a bit more than Big Brother does (with all the same exposures now, grated as a baby he did have more exposure than Big did at the same age since a child under 2 Big was and only and as a infant under 2 Little had a big brother; but we’ve always been very careful not to go over board with the boys in cold / flu and RSV season, especially after that first winter).  The concern is more than when he gets sick, he is so much sicker than his brother, and sick so much longer.

Starting in Dec of 2010, right after turning 3, his health really became an issue.  He has been sick most of the time since then; I keep track and there is rarely a 10 period without a fever and frequently medical appointments and medications.  He has been treated for double ear infections, strep (more than once) and a sinus infection.  In addition to these ‘documentable’ illnesses he has had several ‘mystery fevers’.  Little Brother will run a fever for 4 to 7 days, frequently as high as 103 to 105 and they do not all respond to fever reducers.  During mystery fevers he has ‘fever symptoms’ such as being lethargic; not wanting food, being clingy and nursing much more than ‘normal’.  However there are no infection symptoms and no notable illness.

Given we have really been struggling with his health since the first of the year, and in agreement with the Pediatrician (Dr Amy Kimball, we love her) we decided to seek more advanced medical advice.

On March 16 Little Brother saw Mhd Louai Manini, M.D. a Pediatric Gastroenterology specialist at Blanks Hosptial Cilincs a GI Specialist at Blanks Children’s Hospital (blog post about it here ).  He did many of the same tests Dr Amy had already run; but did a full Celiac Screen which was negative.  The ending impression he left me with, and the impression I got from his nurse that called me with the final results of the blood and stool labs, that he did not see any real reason to peruse further testing at this point.  I have since requested Little Brother’s records and labs from that visit and the doctor’s charting notes state he told me, and I agreed, the next step was flexible sigmoidodcopy and possible a esophagogastroduodenoscopy.  we did talk about more testing, though he did not really name them or elaborate, that but he said he needed to see the blood and stool tests before taking any direction.  We have, nevertheless not moved on anything since that appointment – not sure how that ball got dropped or who did the dropping (I know what I think).

On April 18 Little Brother saw Dr Amy.  He had seen her a week before and been in good shape, no ear infection, throat not infected and so on, on the 18th he had strep again.  Thus she ordered healthy blood work for him to start assessing his immunity.  The blood draw happened April 27th after 4 days of normal tempers.   Based on the SED rate and other results she referred us to an ENT (Dr. Schultz) and to an Infectious Disease Doctor (DR Castagnini).

 Little Brother’s oh so Medical Day 5.11.11

The day started at the ENT’s.  Dr. Schultz.  His office is a pain, but he is pretty nice.  We’ve seen him twice before and he has never been pushy about tubes in the ears (not that I’d do them on his word alone anyhow).  Little seems to do ok with him; and he does not do ok with every doctor he meets (the dermatologist he almost clawed his way out the window).  After the appt I am finding him, in follow up communication, much less accessible, and much more of a ‘do it my way I do not even need to hear another way discussed’ ego and that truly disappoints me. 

Based on my careful notes since Jan 1 of all Little Brother’s temperatures, behaviors, medical appointments, medications and symptoms; he has been given a provisional diagnose by the ENT of Periodic Fever Syndrome (PFS).  That term or dx is, as I understand it, just a classification or a descriptive term for the facts we already have random unexplained fevers that repeat.  The issues now is to see if they can be resolved, to determine if it is a subcategory of PFS (some of them can be scary), and what – if anything – is necessary for long term care.  Little Brother’s hearing was tested, again, and remains unaffected. 

The decision has been made to remove the tonsils and adenoids.  They are very swollen, even when Little has had a normal temperature for 4 or 5 days in a row (as near to healthy as he gets right now).   Looking in his throat this past week, while “well” it is amazing, to me, he can eat the throat and passage is so swollen and red and raw.  There is a chance, I can’t seem to find what chance that this surgery alone will correct the PFS in and of itself and we’ll have a healthy normal little boy.

Since the decision was agreed to the ENT has been rather unresponsively to my questions, concerns or the suggestions of other doctors involved in Little’s care.  Apparently he likes a nice, neat, standard case that going according to SOP’s; and I do not think that is what we have.

We also saw Dr Castagnini that same day; I was impressed he spent at least 40 minutes with us and really listened.  At first he did not seem to take me too serious about our concerns, but as I started quoting medical tests and results and showed him the notes I had made about Little Brother’s temperatures and so on, he started to listen more and his questions and discussion demonstrated he was paying much more close attention.  He agreed to the ‘working dx’ of PFS.  He told me that any facts or family history I think of to share should be shared, there is no way to know what is relevant or not till you look backwards at the end.  He also said it is better to have too much data that to miss the important pieces because they were thought unimportant. 

His biggest concern is the SED rate, its fluctuation, and the repeated illnesses Little Brother can not seem to over-come.  He ordered a good deal of lab work himself; much of it a triple-repeat (having been done by the ped and the GI doctor within a month).  Another other blood draw was hard on Little Brother (and momma) and the decision has been made NOT to return to the lab in the basement 1212 Pleasant where the Blanks Clinics are.  I understand that is the lab that the Clinics send all their lab needs to, but in two draws there, they have yet to NOT traumatize the child.  The first draw ordered by the GI entailed poking the first arm 3x and digging, then poking the other arm 2x.  This lab draw meant poking the first arm 2x then after drawing some blood “loosing the vein” and having to poke the other arm.  I have left that lab twice now with a 3 year old almost hysterical and in a total panic; he has screamed himself to sleep after each visit.  I am not taking him back to that lab again.  If necessary I’ll insist a lab tech be called over from the actual hospital, someone that has experience with small scared children. 

Tests Ordered by the Infectious Disease Doctor

  • ANA (ordered due to fam history of Fibermalgisa and Rumitartitis)
  • CBCD
  • Occult Stool (3 samples on 3 different days this time, not just one)
  • LDH
  • Complete met profile
  • Bartonella 
  • ESR
  • Uricacid
  • Blood Culture
  • histoplasma AB

relevant results:

  • CMV 1.4 (normal is 0 à 0.5) – the only red flag so far
  • SED 15 (normal 1 à 15)

 Everything else came back as normal or negative.  (again, this was, for example, his 2nd neg Mono test) I should be getting complete lab results in the mail; as I am now collecting them all myself.

The three most recently SED rates are:

  • SED on March 16th  9
  • SED on April 27th 91
  • SED on may 11th  15

CMV elevated on all three dates. 

There are 2 SED rates over 20 from 2010 also but I do not have dates.  Both would have been “ill‘ draws as the three above are the  only ‘healthy’ draws he has had. 

Current understanding: 

He has a Periodic / Persuasive Fever Syndrome.  However that is just a classification (as I understand it) more of a descriptive term – and basically we already knew ‘that’ – random unexplained fevers that repeat.   Biggest red flags: SED / CRV rates.  The hope is May 31 when we have the tonsils and adenoids removed everything will clear up – the fevers will be gone and his immunity will strengthen.

Follow up:

Little Brother, May 31, is to have tonsils and adenoids removed.  This is out-patient and will be accomplish using Coblation technolog; supposedly to reduce damager to tissue, reduce scaring and minimize bleeding. 

a controlled, non-heat driven process — uses radiofrequency energy to excite the electrolytes in a conductive medium, such as saline solution, creating precisely focused plasma. The plasma’s energized particles have sufficient energy to break molecular bond within tissue, causing tissue to dissolve at relatively low temperatures (typically 40°C to 70°C). The result is volumetric removal of target tissue with minimal damage surrounding tissue. Many Coblation devices also are designed to stop blood (hemostasis) and coagulate or seal bleeding vessels. Because radiofrequency current does not pass directly through tissue during the Coblation process, tissue heating is minimal. Most of the heat is consumed in the plasma layer, or in other words, by the ionization process. These ions then bombard tissue in their path, causing molecular bonds to simply break apart and tissue to dissolve 

  http://www.arthrocareent.com/video_library this link is a video of the process (thought you’d like that mom). 

The Infectious Disease Doctor is going to put him on Anti-Botics before the surgery, since the ENT refused to because it is not SOP.  The concerns being 1.  the surgery center would refuse him day of event if he has a fever above 99.  2. even if the ENT gets them to agree to allow him (and I don’t see him stepping out to do that, since he likes a nice uniform SOP happening) then there is not way to know if he starts a fever on May 30 or 31, or even 29) if it is an illness starting (and active infection so we’d not want the surgery done) or a mystery fever.  3.  if you can not operate due to mystery fevers, it is nearly impossible to schedule and plan for.  (note Little is now on Anti-B because Big Brother had a positive Strep test May 17, so he’ll remain on medication till after the surgery).

The Infectious disease doctor is going to personally follow up with the GI specialist  (also at Blanks) regarding family history and further testing.  I have to say the ID doctor was much more interested in family history and talking about environmental issues than the GI doctor; the GI doctor did not even ask.  Little does not really show direct signs of GI distress, but there is relevant family background and the inflammation for the SED and CRV scores is coming from some place.  Based on the most recent tests (especially ANA and others) the ID feels it is more likely to be a GI root if it continues after the surgery.  Or, of course, it could, possible, be one of the genetic forms of PFS but I am not ready to research that, or worry about that yet, talk to me in July.  I personally feel it is more likely immune related (and have more questions in that vein for the ID doctor), if the surgery is not the answer, than it is GI; I do not feel it is GI related, but I am glad to leave all that till June or July.  

More links for more information on PFS:

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8 Comments

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8 responses to “Medical Update on Little Brother

  1. Carolyn Bledsoe

    Wow. Just wow. What a journey this has been. Prayers going up for you for strength, persistance, and for Little…. Love you guys, Carolyn

  2. Tina Shaw

    Keep on fighting for Charles and hang in there! Prayers going out to you and family.

  3. Crystal

    wow He has been through so much. 😦

  4. Laura

    love you.. I totally empathize. fingers and toes crossed he one of the ones the T/A fixes the PFS

  5. Laura

    ps CRV ?? or CMV (cytomegalovirus) ?

  6. You know, after you get past the surgery, you might consider seeing what a practitioner of Chinese Medicine has to say about him, from a whole-person constitutional perspective.

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