Tag Archives: assessments / evals / medical

Little Brother’s tonsils and adenoids removeal

Little Brother has had, and continues to have, many on-going medical issues.  Since Jan. 1 he has been on anti-botic at least 60 out of 150 days.  He has been diagnosed with Periodic Fever Syndrome.  Here is a list of relevant blog posts to bring you up to date:

So yesterday, May 31 2011, Little Brother had his tonsils and adenoids removed.

Little Brother was well prepared.  Grand Pat bought us hair nets and face masks to try on.  Little Bother got to see Grand Pat dressed up like the nurses and staff he’d encounter at the surgery center.  She also brought him on of the child sized face masks like he’d encounter in surgery (to go to sleep, IV inserted after he was asleep).  He got to practice “smelling the funny mask” all by himself so that “Little Brother do”.  He and Big Brother had a good time dressing up and going “nite nite”.  Little Brother understood he was going to put on different PJs and then go night-night with a funny mask and then the doctor was going to take the ouchy parts out of his throat.  We practiced several times and he was ready and not at all nervous. 

Little Brother could have nothing to eat or drink after 2 am, this was a concern, half a sleep he doesn’t like to be denied and while he is happy not to nurse all day, not getting to nurse over-night is generally not an agreeable thing.  so momma dutifully tried to wake him at 1:30 to allow him to nurse, but he’d not wake up.  Momma got up at 4:45 to shower, then I got Little Brother up and dressed – this did not make him really happy but I was so glad he did not demand to nurse or eat or have a drink.  Dressed in bed (new diaper only he wore his PJs) then right into car seat.  The trip in to the center started at 5:30 am; at the center — on time — at 6:15 am. 

The day went pretty easy, save the annoying 50 minute wait between being put in a little closet and told to dress Little Brother in a cute little gown and then seeing another human.  His procedure was done at outpatient at Lakeview Sugary Center.  I’d really NOT suggest it to anyone that had a choice.  I will be filling out the survey accordingly  and also addressing management.  There is simply no reason for anyone to do a job poorly, or for a business not to take care of the client.  There were several problems, inattentive staff that acted clearly bothered to have to deal with the families and plainly did not like children.  No soda machines or other options for the families waiting; families that can not leave the building, I might add.   The office / Front Dest staff acted like the children were a problem to be put up with.  Mostly importantly I honestly believe they could work their schedule better, there is no reason for us to sit around in a room smaller than my master closet for 50 minutes with a THREE YEAR OLD and many buttons and other things he can’t touch or open or mess with.  They are very lucky he was in a GOOD MOOD.  50 minutes of waiting in a small room full of stuff that he is not supposed to mess with, had he been in a bad mood due to no food or drink could have been ugly and frankly I was ready to let him loose on the center and their staff after 10 minutes (an acceptable amount of time to for an wait to be) – I should not be put in a position to fight my son due to their incompetence, and would not have.  Our surgery was at 7:30 so you can not tell me they were “running behind” that early – it was simply poor planning on their part.  They are professionals, this is what they do and they really should be able to better. 

Little Brother did great, Daddy blew up gloves and made them fly and then tied them off as balloons.  Little Brother played Pocket Frogs on the iPod and we were able to keep him happy until the doctor was ready for him.  Lake View Surgery center could sure use a transfusion of CHEERFUL staff.  The 2 nurses that did direct care on Little were very nice – but the other staff we dealt with (front desk, check in, and the RN that ‘directed parental traffic – talking us back to see the doc after surgery, giving us care directions before we got Little Brother back, and leading us to him in recovery) all needed a major attitude adjustment.  If you do not like your job, get a different one, being rude, rushing and acting like you are bothered by your routine responsibilities is just unacceptable.  The direct care nurses that we worked with were very nice; though still not overly attentive they were better than the rest of the staff.

The Anesthesiologist came to the room himself to get Little Brother.  He asked Little “do you want to want or want me to carry you…” (I think he was going to suggest something like “to see my tools” or something to entice the child to go); he was not done with the first part of his statement and Little Brother was out of the room and down the hall.  The Anesthesiologist had to hurry to catch up and direct Little Brother to turn correctly.  Little barley waved back at me and Daddy looking at the door at him.

The surgery was fast; and we are told without incident.  The tonsils and adenoids and were very swollen at removal but not infected.  Actually when I got him to let me see in his throat the day before the surgery I was surprised he could swallow at all.  Given that Little had just done 17+ days of 3 different anti-botics, that they were not infected is a very good thing.  When get got to the post-recovery room to see him a nurse was holding him.  He vas crying, I could hear him, and identify his cry down the hall, I held him and he went right back to sleep.  I asked him if he wanted to nurse, he said yes, but then just rested his head on the offered breast, content to no longer be denied, and slept. 

Little Brother came home on, and is still on, prescription pain medication.  The follow up instructions state it is fine if he doesn’t eat for 2 or 3 days not to worry, they do not know my boy.  30 minutes home and he was demanding noodles!  He ended up eating noodles (a few times) a banana, a few spoons of mashed potatoes and gravy, and a couple of crackers though out the day.  Getting him to drink, while much more important, was much more difficult.

He was groggy and cranky till about 4, then still cranky till I finally got him to bed about 10.  Today he is rearing to go and no one would ever guess anything happened yesterday.  He and Big Brother have been wrestling, and running and diving over van seats as I cleaned out the van and everything they normally do.  I am keeping him on the pain medication every 4 hours and will do so for a while even as he acts normal. 

All that is left is to hope and pray that the random high fevers do not return.

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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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Little’s Blood Test Results

Remember Little Brother’s horrible blood draw and appt at the GI specialist at the Children’s Hospital?   Got all the test results back and they all came back normal / negative.  While I am certainly happy about that, I am, at the same time, frustrated.  I would genuinely like some answers regarding the seemingly random symptoms Little continues to struggles with.

The advice of Dr. Mhd Louai Manini, M.D.?  You’re gonna love this!  “let’s watch him for another week or so and see if things don’t right themselves”.  OK.  So I brought in 13 weeks of detail notes regarding fevers, eating, behavior, stools, weight gains and losses and medical appointments; but watching him another week or 2 is going to help the situation??

Nice guy, I really did like him, but please – if you do not have an answer just tell me so.

So now Daddy and I have to decide if we want to give it more time, or go back to the Ped (Dr Amy Kimball, we love her) and see about pursuing immunity issues? 

His symptoms are that that serious; since he is in general still gaining weights and the weight losses correct themselves in a week or two.  Nevertheless, given he has been struggling with this mystery malady since the first of 2011 and while not getting worse is not over it either is a cause for a Momma to worry.  Actually I am more worried about his body’s inability to conquer this (virus?  Bug?) lingering illness than I am about the illness itself.

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3.19.2011

Good day today.  Big Brother completed day 4 with no ‘time out’ removals.  I plan, soon to create a “Peace Spot” for him (and Little) that is more of a sensory / coping / soothing place.  I dislike time out and use it sparingly.  I feel they’d be learning more to have a ’quiet place’ to go to – something to cuddly, maybe dim light, some sensory fidgets – so they can learn to self regulate rather than just learn “this gets you in trouble”.  It is good to know “this is not ok” but that does not really do much unless they are learning another option in place of the not ok choice.  So I really have been looking at ideas for creating a spot they can choose to go, or a spot I can suggest that offers something to then rather than just removes them.  In the mean time, Big got though day 4 without a time out – at day 7 I have promised him a reward.  The ‘stay out of time out another day’ goal has been something I can quote to him to get them to STOP and THINK, which is what he needs – to stop and think.  Momma has to be responsible to be aware and remind him before he starts to cycle up and can’t think clearly.

Started Phonics Pathways  with Big Brother today; and Little Brother was hanging on my other arm joining in as he can (he’d be able to do it all if he had the speech ability).  Right now ve are talking about the 5 vowels and practicing their soft sounds (a = ant and so on).  we’ll remain on this “lesson” until he can tell me the 5 vowels off the top of his head and quickly give their soft sound as I flip the letters up for him.  The goal it is make it automatic before moving forward.  He already knows them; it is just a question of practice and practice until it is fast and automatic.

 Took the boys to the park today to enjoy some sun and fresh air.   

 

This past week when Little Brother saw the GI doctor, he had blood taken in the lab, it was HORRIBLE.  Poor little trooper.  He sat still, on my lap, for the first stick.  One labbie sticking him and one holding his wrist.  I had him in my lap and held his other hand.  She got the vein right off and I do not think she was ready, she jumped, sprayed blood all over and pulled the needle out (insert momma smacking her forehead here).  The female, nicest term I have, holding poor Little’s wrist says “It hurts, but you can’t jump” uh he DID NOT MOVE, I said as much and was hugging him and trying to sooth him.  I vas holding him, and he was trying to be good; HE is not the one that jumped.  Big Brother had HUGE eyes and looked like he was going to cry.  So that “assistant” left and had she not Momma would have insisted.  The Labbie said “I need help” (really, you think) and brought in an older woman.  Little really freaked as soon as they started the process on his other arm, I help him and he was screaming before she even started.  Poor little guy, momma was getting MAD.  Big Bother hid under the table and put his hands on his ears and was crying too.  She poked the second arm and then started to dig for the vein.  My head was going to explode; Little was flexing his entire body and screaming.  The older lady quickly took the needle, pulled it out a little and sank it into the vein; lucky for her she did.  Then she let the younger labbie complete the draw, she was changing syringes (not tubes like every other lab I have seen, syringes) of blood and dropped one on the floor, splattering more blood around, Big crawled out from under the table, picked it up with one hand (other still on ear) and picked it up for her and scurried back under the table.  Finally done, Little was a soaking wet rag doll, I carried him out, he didn’t even lift his head off my shoulder, the screams and tears eased down to choked sobs in my neck.  Big was a great help carrying everything out and staying right with me.  (I think the happy face on the pressure bands just adds insult to injury, myself)

 

 

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Visting the Pediatric Gastroenterology

Background:

 Since the first of the year Little Brother has been not totally sick, but not really well either.  This is an on going issues for him, getting sick and then hitting a stall; not getting worse but not getting better either.  This challenge he has (the reason he vas hospitalized at 12 weeks with RSV, the inability to kick it on his own) tends to be a risk because his system eventually gets so worn down that he is seriously handicapped in his recovery.  He has been running a low grade fever on and off, at least 3 or 4 days a week; rarely over 100.3 but almost always over 99.5.  He has had several periods of very lethargic behavior, days of extremely clingy and ‘sick acting’ behavior too.  He has had several multi-day periods of diarrhea, either totally liquid or mostly so.  On these days he also will have 3 or 4 dirty diapers rather than one (or one every other day) like when “normal”.  He was treated for Step in Feb, and required 2 runs of antibiotic, and since then the symptoms (stools, fevers and lethargic days) have gotten worse.  He has been tested 2 more times fro Strep (he loves that) and both the short and long tests have been neg. 

Other relevant facts (or maybe not, who knows)

Little Brother has had an Speech and Occupational Therapy assessments.  Speech is deemed to be “a signification communication delay” and the OT noted many things such as “low core body strength”.

The visit today:

  • BMI: 16.41
  • weight: 15.6 kg  = 34.39 lbs
  • Height: 97.5 cm = 38.38 inches = 3 foot 16 inches

I was so proud of what a GREAT job both boys did – Big was very cooperative and still.  Both stayed with me really well and listened.  I was so happy with their behavior.  We were all tired, and it was a lot of going here, and going there (not much waiting, that vas nice) and a lot of adult talking.  Big actually fell asleep on the way TO the appt (“I was not sleeping, just resting up”). 

We went to the clinics at http://www.blankchildrens.org/ — actually they are NOT at the hospital, they are in 1212 the building next door.  Thanks for the confusion; a nice adult ‘candy striper’ got us there, and Momma did not panic.  Big did a great job, as did Little, walking back and forth with me as I tried to find the right place. 

I really like how I left with a copy of the notes he dictated about the appt and a list of all the tests ordered; just like when you get a copy of your med records – but I got it as a SOP at leaving.  I like that a lot.  Also had on it all his stats (height, weight, temp, bp, heat). 

Dr. Mhd Louai Manini, M.D.  spent about 40 minutes with us.  He brought in a small toy for the boys to share, and actually was very understanding of the activity level of the boys (he commented on it being high, in honestly, for mine, they were practically still) and Big Brother interruptions.  He talked to me a long time, and looked at Little Brother and ordered some tests, not a lot to be determined at the appt.  He told me “Little Brother is a healthy young man and it is good to see he is growing nicely and continuing to grow”.  He also said “I need no immediate risk, he is not a sickly child”.  He re-ordered all the tests Dr Amy had run, and a few different ones (I don’t think Dr Amy did liver functions).  

Blood tests:

  • SED rate
  • Complete Metabolic Panel
  • Tissue transglut ab iga
  • Immunoglobulin a

 

Stool tests:

  • C difficle screen
  • Cult stool and shiga toxin
  • Stool ova and parasite
  • Wbc stool
  • Occult blood stool
  • 

Things the doctor said (some funny):

He was, of course, amazed Little Brother is still nursing.  He actually seems more amazed at the consumption of solid food (not baby food), cow milk, water and Mother’s Milk.  He did comment “it might be challenging for him stop since he seems to like it” but I assured him first that Big Brother self-weaned and I am confident Little will too, and I tossed him a bone that Little was “weaning” around Christmas but then started getting sick.  SMILE.  The Doctor, in general, did not have a problem with the nursing, just a little surprised I think.  I did point out and the 4 different days (3 at once) that Little refused everything but Mother’s Milk nursing kept out of the hospital. 

He looked over my notes.  I took the last 3 months and made notes of weights, fevers, stools and so on.  They are pretty extensive; I had notes for almost every day, including medication for Step, appt at Ped and so on.  He said “You are a very conscious parent to keep such good records.  They are very useful.

He asked about diet, I explained about no artificial stuff, as best we can and admitted we are not perfect.  He asked about gluten or dairy free, and we are neither.  He said “it sounds like they have a really good diet and that Little Brother is a good eater”. 

He suggested the possibility that this is just “Toddler diarrhea” and THAT he claims is relatively common.  He noted it to be most common under three, and none of this started in Little till after three, so I am not so sure about that.  Never had any digestive issues before.  However as I search Askdrsear.com and webmd I do not fine the term, I find a lot about toddlers and diarrhea but not the term used as a diagnosis as the doctor today did.  I did find this: http://pedclerk.bsd.uchicago.edu/toddlerDiarrhea.html  and this has to be what he was talking about.  Basically an immaturity in the child’s digestive system, often acerbated by diet; but the more I read it does not sound like Little’s diet at all (excessive fluid intake, lacking ‘adult foods’ and a lot of juice).

He also suggested celiac disease I know there is some difference of opinion on the validity and reliability of the blood test but he feels it is about 98% reliable.  My research, today, shows:  IgA antiendomysial antibodies can detect celiac disease with a sensitivity and specificity of 90% and 99% according to a systematic review.  The doctor did note that a full diagnosis can not be made on blood tests alone: and that a positive blood test would still need to be followed by an endoscopy/gastroscopy and biopsy.   That we’ll discuss, DH and I and the doctor after all the lab results are in. 

He wants me to limit sugar (after saying the boys have a great diet).  No juice (they get none anyhow unless sick and I am trying to push liquids); only one serving of fruit a day.

He wants me to add fiber.  Even the chewy fiber supplements.  Going to check with out nutritionist about a supplement that is yummy in addition to diet.

Where we go from here:

Wait for the tests results.  Basically that is all.  Diet changes, keep making notes and wait.

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11.3.10

Today is day 3 of the Pray For Your Husband for 30 days Challenge.   Today’s challenge:

“…love suffers long, and is kind…” 1 Cor. 13:4
“And my God shall supply all your need according to His riches in glory by Christ Jesus.”
Phil. 4:19 Love indeed suffers long and is kind. As you consider your Encouragement Challenge, determine today that you will not say anything negative to or about your husband. Speak kindly to him with words of genuine encouragement.

I found a great new site – it is totally COOL:  http://www.famoushomeschoolers.net/educators.html

 Mount Rushmore, the world’s largest stone monument, is a tribute to four Presidents – George Washington, Thomas Jefferson, Abraham Lincoln, and Theodore Roosevelt.
Do you know what else each of these men have in common? As children, none of them had any regular, formal schooling. They were all self-educated or taught at home!

 Homeschooling is defined as the education of children at home rather than at any school or institution. Homeschooling is a modern term but it is a form of education that has been around for centuries. In fact, until the mid-19th century, most children in America were educated at home. This was before the push for development of public schools began in the 1830s-1840s.

I am having a blast, and spending too much time, reading the lists of authors, educators and leaders; this all ties back to my post on Classical Education  and the fact that until very recently home education vas the norm and the standards of public education have never been as high as the achievements of the previous generations taught at home. 

 

Big Brother had his first ever eye appt today.  This was on the recommendation of the OT evaluation.  The appointment was not BAD, but I felt like I had been wrestling a jellyfish after it was over.  we got in the exam room fast and the tech that did all the first stuff did a great job with Big Brother even making him a cheat sheet of the numerals up to 15 so he could point to the answer rather than have to say it after I explained that Big Brother is not so reliable at numeral recognition (he could have done letters).  Sitting in a room full of cool machines, lights, buttons and things that move is hard on any boy, especially an almost 5 yo one.  We were kept waiting in the exam room too long.  Way too long.  Most of his “being cooperative time” was spent sitting around waiting.  That really really bothers me.  This was a PEDATRATIC Optometrists.  Recommended to work with a young child; in fact, suggest BY NAME to see a child that has extra needs beyond the age-typical ones.  If you are a professional that deals with children ALL THE TIME, you should be able to plan to be on time and not keep little ones waiting like that.  My son is not the best waiter, but he is not the worst.  He is not even 5 yet.  They should plan better; they would have happier more cooperative children to work with if they did.  Not like he was the only child there; it is a child’s practice, it really annoys me when places that are supposedly “for children” can not be bothered to be child friendly.  The last part of the appt I held him in my lap, but the arms were constantly reaching for stuff and he would glace at the doctor, do one “game” then try to get down asking to see something else.  During the ‘just vision test’ I was amazed at the small icons he could identify at a distance, minus my glasses I would not have done as well.  The results:  all the things the OT was concerned about she DID see, but he has the ABLITY what he is lacking is ‘endurance;’ or ‘good control’.  So the OT concerns are there, but they are use issues not medical or physical ability issues.  Kind of like the fine motor stuff, his control and use and ‘lasting ability’ is well behind where he is age-wise.  This should not be too big a surprise; his speech is behind, his fine motor is behind, his sleep patterns have been that of a much younger child for a long time (about ‘age correct’ now, finally) and so on.  The Dev Ped we saw 18 months ago said that he is just “brain’ behind; like a pre-mee or something.  That seems to still be the case.  For example:  he can track a moving object without moving his head; he just can’t stay on task very long and will move his entire head to ‘cheat’ if he can; he has the physical ability, just not the skill to use it very long.  This is true of all the OT concerns.  So there are no physical issues, no medical issues, it is all use and application (again).  He is somewhat far sighted, but that is 100% age typical due to size / growth of the eyes and head.  It should self correct.  He DOES of the congenital cataracts that I (and the entire paternal side of my family) has / had – I have had lens replacements so I don’t, technically have them any more.  I was 97% expecting that, I had them; dad had them, my aunt, their dad and so on back in time; so I had no expectation that my boys would “miss” them.  I am not that upset; the advancement in corrective measures have been amazing; the difference in what the medical profession can and will do now as opposed to when I was Big Brother’s age is STUNNING, I am confident by the time he is 10 or 15 or 20 the advancements will even more stunning.  There are many other issues that I would worry much more about, him (or them actually) getting my eyes, is the least of my concerns.  The cataracts are “small and slight” and not effecting his vision at this point in time.  Nothing in today’s evaluation needs to be addressed by her professionally.  She will write it all up for the OT and advise on exercised and “activities” she is going to forward me a full copy of that report.  He does not need vision correction at this point and he is healthy and sees fine.  Great appointment; but totally physically and mentally draining for Momma

 

This afternoon called for a trip to the park.  55 degrees and SUNNY on Nov 3 is a great fall day.  Only stayed about 30 minutes due to the wind; but they boys got sunshine and to stretch their legs.

Once home we played CandyLand.  Big Brother is “all about” getting to play.  He carries it around and presents it to me at the oddest times, like as I am helping them strip for tubbie.  Today we played.  I told Big Brother he had to follow the rules, or I was putting it up and not playing.  He did a great job.  Only once did I have to suggest putting the game up; but only once.  Little Brother started the game with us, all excited, and got up to turn 3.  He carefully took cards for each turn and carefully moved his plastic person; 2 of the 3 turns he was able to “do it alone” (that is find the next correct color).  Then he wandered off.  It took a lot of “ok Big your turn, what is on your card, where is that, move you piece …ok my turn, let’s see what I got, ok I moving …” and so on to keep the game on track, but Big Brother did better than any other time we have tired to play.  But not a “game” for “fun” for momma really – :).  I am glad to see his ability to play improving.

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Big Brother Vision, yet another assessment

Great.  Another assessment for Big Brother. 

Big Brother has been refereed for a vision check; the OT assessment at Childserve suggested it.

He is seeing Beth Triebel, OD. http://www.vision-park.com/aboutus.html  

Here are the concerns the OT at Childserve listed in her referral – I have looked them up (they were all new to me) on:  http://www.actg.org/programs/optometric/optometric_terminology.htm

  • ocular motor function
  • pursuits — a condition in which the individual’s ability to follow a moving target is inadequate. Vision therapy is an effective treatment option.
  • saccades — the eye’s ability to direct and coordinate movement as it quickly and voluntarily shift from one target to another.
  • accommodation — (eye focusing) the eye’s ability to adjust its focus by the action of the ciliary muscle on the crystalline lens. When this accommodation skill is working properly, the eye can focus and refocus quickly and effortlessly, which is similar to an automatic focus feature on a camera.   The ability of the eye to accommodate does decrease with age due to the crystalline lens becoming less flexible causing a condition called presbyopia. (there are several sub types or concerns)
  • binocularity — the ability to use both eyes as a team and to be able to fuse (unite) two visual images into one, three-dimensional image

this is his first vision check (bad momma).  Since he can not read yet, I am not sure how the OT sav these issues, but that is why she has a degree and I do not.  I will be having an appt to sit dovn with her alone, not kids, and talk about the assessment, everything they did and what the implication of her observations is / can be.  After that I should have an idea where her concerns come from, that is what she has noticed. 

Not 100% sure how I feel about “vision therapy” and all that, I am going to need to see real science about this stuff –  e. g. nerves not working right, muscles not doing what they are supposed to and so on.

Again, I have to ask the why that I know no one will be willing to answer.  Forceps birth???  Something from the time in the womb, something related to his messed up growth in the womb?  It that all part and parcel of the sensory stuff (the self limiting food?) or the emotional stuff?  How is all this connected and what caused it all.  Is it too much to expect and want some simply factual answer re: causation and physical / root cause???

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