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).
- SED rate
- Complete Metabolic Panel
- Tissue transglut ab iga
- Immunoglobulin a
- 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.