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Pls help my son is sick every 21 days...DAIRY ALLERGY?

post #1 of 8
Thread Starter 
My son has been having these "episodes" since he was 8 months old (and now he is almost 15 months). The first one began the week we moved from Maryland to NH- symptoms:
low-grade fever, lethargic and wouldn't eat (I exclusively bfed), frequent green diahrrea, and stiff neck. I brought him to his Pedi in the midst of it, right before we left, who said it was probably teething (she was a quack I gathered from other things). The homeopath we had gone to said it was probably teething as well, or just a viral bug. I hoped they were right and couldn't wait till the day he would finally get all his teeth in. We gave him tylenol (at this point I had no choice everything was so last minute) packed the u-haul and drove through the night hoping for the best (what a trip THAT was). A few days later he was all back to normal. Now as these episodes kept recurring, I wrote everything down and this is what I've noticed:

-Episodes recurr every 18-21 days on the dot (which baffles all the Drs we see)
- they last exactly 5 days, 6th day he is all better.
- 2 days before episode starts, he would look very pale & dark circles under sunken looking eyes
- Day 1 & 2 are the worst: we have to hold him all day long & comfort him, he is so lethargic and uncomfortable,whimpering, won't eat. Low-grade fever ranges from 99-101 degrees
-Day 3 the stiff neck appears: He baby's his head & won't turn it.
Looks like his glands are swollen. Also on day 3 the green diahrrea would appear.
-Day 4 would be a bit better, diahrrea and stiff neck still, but no fever.
-Day 5 no more stiff neck but VERY moody
-Day 6 all better

One thing to note, this poor guy has had trouble from the start. We had a heck of a time getting him to breastfeed in the beginning, and saw MANY lactation consultants. It took us till he was 3 months to FINALLY have him feeding well enough to stop the supplementing with breastmilk. Since day 1 he had LOTS of gas, green poops, would arch his back, colicky, so we were constantly at the Pedis with him. Pedi wanted to put him on strong acid reflux meds when he was only 2 weeks old!!! (that's when we got a new pedi). I found this message board and read alot about dairy allergies, which is what it sounded like he had. (I'm SO glad I found this site!) That's when I cut out dairy (when he was 3 months old at this point). Green poops STOPPED. By 6 months, he seemed less colicky. He still would barely nap a half-hour a day, and was moody for a child that age...so that's when we saw the homeopath, around the 8 month mark. She prescribed remedies for my son & I after talking to us for awhile, which we diligently followed. That same time was when this first episode began. I called the homeopath & his Pedi which both said teething, like I said earlier on, or maybe a viral bug? Since his fevers weren't high they weren't worried, and we were moving out of state the next day.
One interesting fact about the homeopath visit, was that she told me to add yogurt back into my diet, as it's such a mild dairy it shouldn't matter & I need the calcium/good bacteria. I was stupid and did what she said. I noticed that when I had more than one yogurt serving a day, his symptoms would return. But with just the one cup at lunch it didn't make an obvious difference (note: I was going thru so much at the time I wasn't thinking straight, btween moving out of state, living with parents, looking for house (and buying one in Sept), my husband a job, etc etc. It didn't jit me that DUH it was DAIRY still. That one serving didn't seem to matter. Another thing I am wondering is, could the remedies she had prescribed done something? Were they in a lactose base? Sulphur was one of them.

In September, at 11 months old, we finally saw his new Dr (family practitioner) here in our new state. She is baffled by this, and eventually referred us to a Pedi Gastroenterologist which we have had to wait months to
see, his first appointment is Jan. 5th (tues). She thinks what I basically told her: Something Viral (an infection that keeps recurring) or Gastro-related. One thing she noted, however, (we saw her on the 4th day of an episode) was that he had a red throat. Also, when his bloodwork came back everything was normal except his liver was off (which could mean just that he had a cold or something more). Now, in the past 2 months waiting for this Jan 5 appointment, I thought about what I did differently around when these episodes first began (yes it took that long to figure out- things were so stressful and crazy it took that long), and I concluded: the homeopath visit and adding yogurt back into my diet. SO, it was now the very end of November, and I cut the yogurt out completely. I also became more vigilant with soy (which unfortunately, is in practically EVERYTHING) and removed that. I knew he was due for an episode right before Christmas, so this time would tell. 2.5 weeks after removing it, he FINALLY began napping regularly (at 14 months old!) He went from barely napping a half hour a day to napping for 2 hours every morning and a short 30-40 min one in the afternoon. :0) He also seemed much happier. But right before Christmas he started to look pale, and my hopes sank that he was getting sick again as expected. But this time was different. He never had a fever. He had diahrrea right after eating in the am (and about 4-5 times a day) right from the start this time, but otherwise was ok during the day, would still eat & play & nap. The evening the stiff neck would appear (around 4pm on), but he would sleep better at night than in the past. When the 6th day arrived and he was all better & I realized that was it. That was supposed to be his normal episode and it was SO much better. Hope! (note: this was approx 3 weeks after removing all dairy)
I haven't talked to his Dr yet and we're still going to his tues appointment with the Gastro enterologist. He is due for another episode by the end of this week or beginning of next. I want to wait and see before doing anything drastic. I have heard horror stories about what the GI drs do and am very doubtful of Western medicine. I feel the dairy definitely has something to do with it, but could it be all? Or something else as well? I will talk to the GI Dr but am very wary. They always see allergies as a last resort.
Is there anything I should know before this appointment? (to watch out for?)

Also, he is very small for his age (way under the weight chart completely, though he's in the 5th percentile for height). He was just under 18 lbs at 13 months of age. They want to start supplementing (which I've heard SO many times before tho I tell them time and again my husband is a small guy and was that way).

Has anyone heard anything like this before? The stiff neck (and what appears to be swollen glands) is what really has us all concerned the most. Also the fact it's recurring.

Also, does anyone know of a natural alternative to tylenol? We've been giving him it since he was 8 months old when he gets like this, it seems to help the neck (and relieve his pain/whimpering) but seems to cause more green diahrrea. I hate what's in it and giving it to him, but I can't stand seeing him in pain. Though the past 2 months we haven't had to give him any.

I'm so sorry this is so long-winded, I just have no idea what to do and we are so emotionally and physically exhausted at this point. I hate seeing him like this. But at least now I have some small sliver of hope.

:0) Kristen
post #2 of 8
Thread Starter 
Oops another thing to note is that my son's grandma (on his dad's side) has Colitis. Now I know nothing about this, but is it genetic, and could it cause this? My husband also has stomach (and intestinal) issues -lol- and still eats dairy though it DOES bother him... he never looked into it. His brother is lactose-intolerant as well.
post #3 of 8
Have they tested for cyclical neutropenia?
post #4 of 8
Originally Posted by mykdsmomy View Post
Have they tested for cyclical neutropenia?
Wow, I looked that up (had never heard of it) and that sounds so right on the money.

OP, I have nothing to add but hugs and all the best wishes in the world.
post #5 of 8
Originally Posted by bjorker View Post
Wow, I looked that up (had never heard of it) and that sounds so right on the money.

OP, I have nothing to add but hugs and all the best wishes in the world.
CRAZY! But isn't this place an insanely wonderful resource? Holy moly.
post #6 of 8
Thread Starter 
I mentioned the cyclical neutrepenia to the Dr when we were there a couple of days ago (my son had another episode that started sunday and just ended today -this was the worst one yet.) When we were there he took blood again to check his blood count (they had to do the finger-stick as the poor guy was too dehydrated :0( They also did a catheter to check for kidney/urine infection.
Results just came back...and at least we know some things now. He has a UTI (poor thing has had that for so long...) as well as a bunch of other interesting things going on. He is HIGHLY allergic to soy (which he has been exposed to all along in my breastmilk), and probably dairy as well but we didn't see the allergist for the "official" test yet, this has only been from the bloodwork so far. He also is considered "short stature" and we are to see a geneticist for that. We will most likely be seeing an endocrinologist as well because his growth hormone was off (low I believe). SO... we will be at the Children's Hospital about twice a week for the foreseeable future, but the good thing is we are finally on the right track and this looks like something that we can clear up and not a lifetime thing. *huge sigh of relief*
So now he's on Amoxycillin (sp?) for 10 days and then Bactrim for a month after to clear up the UTI and any possible recurring infections. We have an ultrasound on tuesday to check his kidneys, and thursday we're meeting with the allergist. I am on a super strict soy/dairy free diet.
I'm hoping that once this UTI is cleared up that these episodes can finally stop and he can be happy and catch up to those his age. I pray that there isn't more going on, but at least I finally am getting somewhere.

:0) Kristen
post #7 of 8
You might want to read about PFAPA as well. I've never heard of cyclical neutropenia, but PFAPA was suggested for my cyclical fever daughter and it looks like both are so similar! Fascinating, I love this board... off to read more.
post #8 of 8
OP, I'm so glad you are getting some answers! It's so scary when our kiddos are sick and we don't know what's going on You are in my prayers. Keep us posted!
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