....but You're Not Educated On My Son

[Mamato2boys]

This is a double-post, of sorts. I felt the need to talk about my (and my son's) experience with "well educated" doctors.

The first sign that he might have a problem came at five months. He was exclusively breast fed up to that point, but I started having supply issues. Begrudingly, I sent a bottle of milk-based formula with him to his caregiver. After giving him less than 2 ounces he immediately broke out in a red rash and hives all over his face & neck and his face began to swell. I took him to my allergist, who had blood drawn. That's when we found out he was allergic to eggs, milk, cats & dogs. He had also developed eczema on his right calf. The allergist didn't educate me at all on the intricacies of food allergies. I thought all I had to do was not feed him eggs & cow's milk ! At his follow-up six months later (Ryan was now a little over a year old) the allergist mentioned we had to avoid foods with milk & eggs in them. Through internet research I learned exactly what that meant (and that really should have been something I was taught from the doctor). He was getting soy milk at the time and was having diarrhea and severe diaper rash - so bad that layers of skin were coming off and he would scream whenever he pooped. It got so bad that every time I changed his diaper, I'd have to rinse his raw little bottom off in the tub with warm water. Even peeing burned his raw skin. He would start to wimper when he saw me preparing to change his diaper. To this day if he gets diaper rash he's really afraid of it hurting - and he's nearly 3 now. I asked the allergist if it was possible the soy milk was causing the reaction, and he said "no - he's not allergic to soy." I happened across some information on another site that it was VERY common for soy to cause diarrhea, and several site members stated this was happening to their child. I switched him to rice milk, and within 24 hours he went from 10+ explosive, foul-smelling, watery stools to 1 or 2 pasty stools a day. I was so angry with the allergist that I switched over to a pediatric allergist at my local university hospital (the only pediatric allergist in the state). She did another blood test, a RAST test, and confirmed his allergies. He was continuing to have intermittent bouts of diarrhea. I questioned the allergist on whether she thought it could be celiac's. She said she wasn't sure but didn't think so, and left the room to do paperwork. She then stuck her head in the door and said "by the way, have you ever had him tested for cystic fibrosis ?" I'm not a doctor but I do work in the medical field, so I know that cystic fibrosis is a death sentence. I'm sorry - but you DO NOT just stick your head in the door and casually mention a death sentence like you're talking about the weather !!! We have a wonderful, supportive pediatrician and when I told him about my experience he was just floored. He ordered a celiac blood panel, which was negative. Needless to say, I'm avoiding allergists like the plague now. Fast-forward to age 2. He still continued to have intermittent, foul-smelling diarrhea. The number of "normal" stools he had could be counted on 1 hand, despite me being very diligent about not exposing him to eggs/milk. I tried probiotics with minimal impact. I did several hundred hours of research trying to sort out what was going on. Then brought him to a pediatric GI doctor a few months back at the university where I work. I knew this doctor well and felt I could trust her. I brought her a stool sample - she ran tests for blood and fat - both were negative. The GI doctor told me "some kids never have a normal stool, and we don't know why." She also told me the celiac diet "sucks" (way to be encouraging, huh ?), and that outside labs like EnteroLab often prey on unsuspecting parents. When I explained that EnteroLab had ZERO to gain by giving us positive vs. negative results, she only dug in her heels more. When the stool tests she ran were negative, she dropped the ball and would not offer any other help - probably because I refused to allow her to do an intestinal biopsy. I refuse to believe that diarrhea/loose stools are EVER normal. As you can see in my signature I then chose to have him tested through EnteroLabs - much to my surprise I found out that DH and I both have GS genes. Thank God Ryan doesn't have celiac's and we caught this before more damage was done. We're now in the process of phasing out the old diet and phasing in a gluten-free/CF/soy-free diet. I've also opted not to further immunize him (or even begin immunizing my youngest), because I firmly believe the flu shot triggered Ryan's egg allergy (despite all 3 doctors denying it). Pre-flu shot he was able to eat eggs with no reaction, after the flu shot he began reacting to eggs - you do the math ! Our pediatrician said celiac's didn't qualify for a medical exemption from immunization (that he knew of), so I had to get a philosophical/religious exemption, which was very easy to get in our state, thankfully. Our pediatrician is actually wonderful and very supportive...he's encouraging us to try the gluten-free diet to see if it'll help. He also knows I plan to treat my new son under the assumption that he has the same issues and supports that. Although he disagrees with my decision not to immunize, he's respectful of my choice and can at least see why I feel as I do.

What a sad state of affairs that it's so common to have this type of battle with doctors.

I just wanted to point out too, that even though I work for doctors - it didn't change my experience. I still had to do the majority of this on my own. I still had to struggle to try to sort this out. I still had to bang my head against the wall and be treated like a zealot. These people may be "well educated" - but they aren't educated on MY son the way I am. I know what works and what doesn't. What a shame they can't open their minds and their ears.

[Ursa Major]

It would be sad enough if your story was unusual, but unfortunately it is not. Many people have gone through the same sort of thing, often with their kids almost dying before doctors would agree that they may have celiac disease. It's absolutely crazy.

Most doctors don't understand that to have 'only' an intolerance to gluten, rather than celiac disease will cause the same symptoms, and is just as bad.

I am glad you never gave up, and that, as a result of your love and diligence and fighting spirit, Ryan will grow up to be healthy in mind and body. If I'd have had a mother like you, I wouldn't be as sick as I am now.

[Mamato2boys]

I am glad you never gave up, and that, as a result of your love and diligence and fighting spirit, Ryan will grow up to be healthy in mind and body. If I'd have had a mother like you, I wouldn't be as sick as I am now.

That brought tears to my eyes. Thank you so much for that. I've very often questioned my sanity during this journey (and still do, sometimes). I was so afraid that if I DIDN'T fight and keep going, that Ryan would end up being very sick down the road. The guilt of that, knowing I could have possibly prevented it, would eat me up inside and haunt me to my grave.

[shayesmom]

That brought tears to my eyes. Thank you so much for that. I've very often questioned my sanity during this journey (and still do, sometimes). I was so afraid that if I DIDN'T fight and keep going, that Ryan would end up being very sick down the road. The guilt of that, knowing I could have possibly prevented it, would eat me up inside and haunt me to my grave.

Your story is very similar to a lot of our stories. Not many of us were lucky enough to be diagnosed quickly, much less diagnosed at all. With Shaye, 3 pedis and 2 GIs were completely clueless. Their advice was constantly the same when dealing with Shaye's FTT, frequent stools and overactive behavior.

Dr.: "She needs to be fed more pasta, bread and plenty of butter". Me: But I SWEAR that she has a food allergy going on and I can tell you when she has oatmeal, her behavior is uncontrollable!". Dr: "There is NO proven link between food and hyperactivity. You must just have unrealistic expectations of what parenting is". Me: "So is it normal for her to have 7 bouts of diarrhea per day?". Dr.: "Yes. For some kids that is normal".

Dr.: "Your dd needs to gain weight, she if off the weight charts." Me: "She does eat but she NEVER stops moving. She's in hyperdrive all the time and hardly sleeps. What can I do". Dr: "Feed her mac n cheese and more pastas". Me: "But I've been doing that and she's refusing to eat it. I think it upsets her stomach". Dr.: "MAKE her eat it. And give her Pediasure". Me: "Each time I give her Pediasure she cries and writhes on the floor with severe stomach aches. Can she have an allergy". Dr.: "Just keep giving her the Pediasure".

Then I brought dh in for reinforcement one day. He saw a note in Shaye's chart written by one of the pedis...."Parents appear to be attentive". We both brought up our concerns to the pedi on that appointment and once again brought up food allergies. Her response: "You need to make her eat. She is way below the growth chart and from now on you need to bring her in for weight checks every 2 weeks so we can monitor her". Me: "We need to find some answers to this. We ARE feeding her but she's still not gaining. What can this be?". Dr.: "We need to monitor her weight. If she doesn't start gaining, we may have to inform CPS and have them spend time at your home to be sure that she's receiving adequate nutrition".

It was 4 months after the threat of CPS being called that we finally were able to convince the pedi that we needed to test for food allergies. She only agreed after sending us in for Cystic Fibrosis tests and doing a battery of other invasive procedures. The GI doc she referred us to inherited a toddler who was so terrified of doctors that she was nearly impossible to examine. And the GI also pushed Pediasure and 3 other supplemental drinks. All of them made Shaye worse. I was so lucky to find an acupuncturist who recognized the problem right away. In 20 minutes on the phone, the acupuncturist was able to say definitely that she was 95% sure Shaye had Celiac....100% sure that she had a reaction to wheat. The acupuncturist never saw Shaye, she just observed that our weight issues began within weeks of starting cereals.

Too bad none of our doctors could identify such a simple freaking thing. Much to their vehement objections, we put Shaye on a gluten-free diet and never looked back. The ONLY benefit we received in the whole fiasco was that they did confirm an egg and milk allergy. Not that they knew what to do with it. The pedi still pushed the flu vaccine even with a documented egg allergy. Small wonder I spend hundreds of hours researching and finding ways to keep my dd happy and healthy through natural means. What a complete and utter waste of time, money and confidence they all turned out to be. Meanwhile....after all of that, I still get flack from relatives who hate the idea of us being on a gluten-free diet and who constantly harp about how stupid it is to do it when we don't have a diagnosis that there even was a problem.

I feel your pain and I understand all too well your anger. The medical system is not infallible. Just because all of their tests can't find a problem...doesn't mean that the problem doesn't exist and the parents are inept or overly concerned. Some doctors just have a low amount of common sense which unfortunately negates much of the education they have had. It's when you can find a doctor with both that you can breathe a little easier.....

[Mamato2boys]

Vicky - I'm still stunned to hear how common it is for doctors to say that diarrhea is "normal" for some kids. Gimme a freakin' break !! I don't think I'll ever get used to that. It just seems so odd to me how rigid doctors are and how unwilling they are to think outside the box. If they can't find an answer that fits the medical model, then the issue that's going on for the patient must be "normal" for them. Someone should print in all the medical books - DIARRHEA IS NEVER NORMAL !!!

Good lord it's scary how ignorant some of the best educated people can be.

[tiredofdoctors]

My son had migraine headaches that started between 14 and 16 months old. He was vomiting 4-5 nights per week. When he was 18 months old, he weighed 22 pounds (he weighed 9 lb 13 oz at birth). At 22 months, he weighed 18 pounds. The doctor asked me if I had put him on a DIET. A DIET???? I had been in the office every two weeks telling him that Brandon was vomiting 4-5 nights per week. I asked him about allergies . . . he told me that allergies were a fallacy -- a myth. The end result . . . after searching long and hard, found a neurologist who said, "This poor baby has migraines. Hasn't ANYONE mentioned that possibility to you? Your family history is LOADED with them. " That was after Brandon had been telling all of docs that "I have a tummy ache in my head." We were able to get him help, and he started putting on weight like you can't believe! He's 24 now. Is he Celiac? Don't think so . . . just doesn't show ANY of the signs. But then, I only have antigliadin antibodies, so I want him tested. He was simply allergic to nitrates and nitrites . . . and finger-food (bologna, hot dogs -- even baby food 'vienna sausages' at that time -- are LOADED with them). Finding MD's who actually LISTEN -- either to the parent, or the child, is sometimes VERY difficult. Heck, for that matter, it's hard to get them to listen to us as ADULTS when we're talking about our own bodies!

[Mike1972]

Mama2ToBoys,

Did you doctor ever consider Munchausen Syndrome by Proxy? It would seem to me that this is the probable diagnosis in your case.

[Jennas-auntie]

Mama2ToBoys,

Did you doctor ever consider Munchausen Syndrome by Proxy? It would seem to me that this is the probable diagnosis in your case.

No need to sign up just to be nasty. Munchausen by Proxy is not recognized by the American Medical Association or the American Psychiatric Association. If someone is being abused, then call it poisoning or abuse by its name, rather than sticking a label on someone you do not know, and base it on actual evidence. While a reader may not agree with some things listed, like a decision not to vaccinate, the very fact this person is improving would negate against your supposed hypothesis. This term is getting thrown around more and more, and quite frankly, is typically just another way of labeling a parent you don't agree with, find annoying, or can't figure out what the health problem is (which is not the same thing as the health problem not existing).

[tiredofdoctors]

Mama2ToBoys,

Did you doctor ever consider Munchausen Syndrome by Proxy? It would seem to me that this is the probable diagnosis in your case.

Okay, I'm nipping this one in the bud. If you have joined this forum simply to cause trouble and to berate, insult or submit otherwise inflammatory comments, I have two suggestions that you need to take: 1) Keep comments like that to yourself or 2) Leave this forum. Now.

We are here to support each other, to have a safe place to vent, bounce around ideas, question whether others have had similar experiences and gather as much information as we can about a disease over which our only control is permanent dietary changes. If you have nothing more to offer than an inflammatory and insulting response in which you give a "diagnosis" (which, by the way, would you care to list your credentials that allow you to make a diagnosis?), then please leave.

This may sound like a harsh reply. It is. It is also meant to be. I am sick and tired of troublemakers coming on to this forum and exhibiting the EXACT behavior you just did. We were doing fine before you joined and I'm sure we'll do even better when you leave.

[Guest nini]

Mama2ToBoys,

Did you doctor ever consider Munchausen Syndrome by Proxy? It would seem to me that this is the probable diagnosis in your case.

Now that's just not fair. What qualifies YOU to make this assumption? Many of us are extremely sensitive about the MSBP label being thrown about because too often it was aimed at us when we were trying to figure out what was wrong with our kids. ALL we were guilty of is loving our kids and wanting them to be healthy, NOT THIS NONSENSE.

[jerseyangel]

Mama2ToBoys,

Did you doctor ever consider Munchausen Syndrome by Proxy? It would seem to me that this is the probable diagnosis in your case.

Mike--

I don't know why you joined the board and made this your first post.

Please know that it has been reported--this is a place where people come for helpful opinions. Unless you have something supportive to contribute, or a legitamate question to ask--I would suggest you not post here.

[Mamato2boys]

Mama2ToBoys,

Did you doctor ever consider Munchausen Syndrome by Proxy? It would seem to me that this is the probable diagnosis in your case.

Thanks for reading my post, and for being concerned enough to post back to me.

If I did have Munchausen by Proxy, then I guess I'm in good company here, don't you think, since we all share such similar stories ?

Shoo fly.

[Guest nini]

Shoo fly.

ROTFLMAO!!!

[Mtndog]

ROTFLMAO!!!

'zactly- I think I'm Munchausen by proxying myself!

Or is it just that "It's all in my head"?

[Mamato2boys]

'zactly- I think I'm Munchausen by proxying myself!

Or is it just that "It's all in my head"?

NOOOOOO.......it's all in your GUT - get it straight !!

[AndreaB]

You guys are giving me a chuckle this afternoon.

The doctor I saw for allergies is a md that has branched out to allergies and toxicity. When my son was 3 months old I went in for allergy testing since he was strictly breastfeed. Whatever showed allergic (above low), I dropped and his eczema started to clear. I did not test allergic to oats or barley so wasn't concerned with those, although I did test moderately allergic to gluten and gliadin (IgG levels). It wasn't until I tested through enterolab and found out I had an active sensitivity and cut out all gluten that he completely cleared up. I really don't know if his stools were different...don't breastfed babies have watery stool? Maybe my first two had problems with gluten early on and it wasn't as bad. Both of them also have an active sensitivity. I assume celiac even though Dr. Fine can't diagnose celiac just because we all have at least one celiac gene. My oldest son has 2 celiac genes, my youngest has not been tested yet.

Allergies are very prevelant in our society now. Why would there be a top 8 allergen list if that were not so. Obviously, infants and young children will present will allergies, especially if present in the family. I could go on....but I won't.

[Mamato2boys]

You guys are giving me a chuckle this afternoon.

The doctor I saw for allergies is a md that has branched out to allergies and toxicity. When my son was 3 months old I went in for allergy testing since he was strictly breastfeed. Whatever showed allergic (above low), I dropped and his eczema started to clear. I did not test allergic to oats or barley so wasn't concerned with those, although I did test moderately allergic to gluten and gliadin (IgG levels). It wasn't until I tested through enterolab and found out I had an active sensitivity and cut out all gluten that he completely cleared up. I really don't know if his stools were different...don't breastfed babies have watery stool? Maybe my first two had problems with gluten early on and it wasn't as bad. Both of them also have an active sensitivity. I assume celiac even though Dr. Fine can't diagnose celiac just because we all have at least one celiac gene. My oldest son has 2 celiac genes, my youngest has not been tested yet.

Allergies are very prevelant in our society now. Why would there be a top 8 allergen list if that were not so. Obviously, infants and young children will present will allergies, especially if present in the family. I could go on....but I won't.

Yup - breastfed babies do have watery stool, and it doesn't have much of an odor. That's definitely the case with my youngest, who is currenly being breastfed (he's 8 weeks old).

The problems came about when Ryan was weaned at a year and was completely on solids. With him it would just go everywhere and had such a foul odor it would literally fill the room.

[Adelle]

Ur post made me tear up so much!! My husband (who's name is also ryan) went gluten free with me, and the D and abdominal cramping he'd had his whole life cleared up. His mom fed him goat's milk as an infant as he was "allergic" to milk and formula. His mom (a terrible mother, but that's another story) said he'd just throw up everything but goats milk. He doesn't have a MILK sensitivity, he has a GLUTEN sensitivity. Bread/pasta is her favorite food. She won't give it up (even being diabetic). Oh man, ur babies r so lucky to have u!! My ryan and I want kids (in a few years), but we're not even fiddling with the glutaniousness (it's tooootally a word). I don't know about vaccinating.... But we've got time to research & decide.

I thought I was INSANE, I was convinced. Ryan thought his morning d and stomach PAIN was "normal".

I sometimes wish that at some point in their lives, every doc would get VERY sick and very scared. If they had a few (10-15) doctors dismiss them as "crazy" maybe they'd listen to their patients in the future.

I'm glad ur kids r doing well. And it's awesome that u had the courage to do what ur son needed, no matter what the doc said.

[Fiddle-Faddle]

I don't know that breastfed babies have a watery stool--I always thought it was more like French's mustard (both color and texture), but it smelled very mild--like buttermilk. Formula stools, though--pee-U!

[tiredofdoctors]

My kids' doctor called it "liquid gold" . . . . . It only smelled "sweet" -- breastmilk is mostly sugar -- it's the only "craving" we're born with. Salt is an acquired craving! Sure know it went everywhere if there was a pucker in the side of the diaper!!!!!!

[Mamato2boys]

I don't know that breastfed babies have a watery stool--I always thought it was more like French's mustard (both color and texture), but it smelled very mild--like buttermilk. Formula stools, though--pee-U!

That's actually a better description than "watery." Though, there is a whole spectrum of what's considered "normal" for a BF baby. For instance Aiden only goes every 2 or 3 days now, but when he does - LOOK OUT ! LOL His is a little more orange than the mustardy-look, and a lot of times it doesn't have the milk curds in it. Probably because of how infrequently he goes and/or because he absorbs so much of what he takes in. I was concerned about the consistency because I don't have a good reference point of what's normal, and researched it. From what I've read, Aiden falls right in line with what's normal. Though I do expect to see a change in him once I completely get off glutens myself.

My kids' doctor called it "liquid gold" . . . . . It only smelled "sweet" -- breastmilk is mostly sugar -- it's the only "craving" we're born with. Salt is an acquired craving! Sure know it went everywhere if there was a pucker in the side of the diaper!!!!!!

I agree wholeheartedly with your doctor !!

I heard someone else describe the smell as "curried yogurt." It definitely has a distinctive smell (not in a bad way) - once you smell it, you never forget it.

[sephiro499]

"""The allergist didn't educate me at all on the intricacies of food allergies. I thought all I had to do was not feed him eggs & cow's milk !""

To be honest I'd say that 50% don't really care if you are informed as to what is happening with your body, unless it came some how come back on them. The other 50% do care but due to managed care, they don't have the time to properly go over things with you. I find that most in the health care profession just want you to follow orders. Most of them take an educated shotgun approach to things, just keep trying things until they find what works. It's kind of like throwing darts at a dart board, and it can kinda piss you off at times.

Personally, I think that you should be able to write your OWN prescription for everything but stuff that is under the Controlled Substances Act, provided you either pay full price or have your insurance pick up part of the tab.