Talking Allergies

Obviously, as per the title (and post count!) I'm the newbie here. But I've got a problem, and I'm hoping that someone can help.

If I knew all the BBCode here, I'd try to cut the backstory so if you didn't want to read it... It wasn't there. As it stands, it looks like I can't find the code. Sigh. Sorry.

Anyhow. For the last eight years, I've known my husband has a milk protein allergy. As he was never tested, though, I've become aware that it could be an intolerance, but has always been called an allergy. Point of contention, I know, but bear with me. I have a point, I swear.

We have a 15 month old son. When he was about 6 weeks old, he started spitting up and losing weight. His pediatrician decided that it could be cardiac or renal, and sent us to the hospital, where my Little Prince was diagnosed Failure To Thrive, and we were sent home with instructions to feed him formula. When he got the formula, his spit increased by insane orders of magnitude. While before he would spit about one to two tablespoons at a feed, he suddenly was *gushing* spit. He was passed around at family gatherings with a bathtowel, as he was prone to spitting at any moment, and probably between 4 and 6 tablespoons at a go.

With some help and talking around, it seemed that perhaps there was an issue with the milk for my son, just as with his father. We put him on soy, which was a resounding flop. We talked to the pediatrician, who told us that spit was normal, and to buy more bibs and stop worrying about the laundry. It would go away when he started rolling over.

It didn't.

Then the ped told us it would go away when he sat up. Then stood up. Then walked. Finally I'd had enough. In September, without the advice of the pediatrician, who wanted to wait another 6 months before trying anything, we removed all dairy from his diet. The change in our son was almost immediate and incredibly profound. From eliminating the spitting (which was 2-5 times a day, 4-6 days a week), to eliminating a runny nose, to allowing my son to focus on a task, there was a huge change. At his 15 month appointment, we brought our before and after list to the pediatrician, who said it did look like there were some allergic reactions in the mix.

I assumed that would be good enough.

About a week and a half later, our house came down with the Hamthrax. My son developed a nagging, persistent cough. When he started gurgling in his sleep, we went back to the same pediatrician who had just agreed that he had issues with dairy products. The Little Prince was diagnosed with croup and stridor, and prescribed Dexamethasone tablets. When we got the scrip home, I looked up the ingredients. Sure enough, one of the chief non-medicinal ingredients was Lactose. The pharmacist called the manufacturer, and their rep didn't know the source, so we opted to see if the pharmacist could call the pediatrician to switch the scrip to a compound of the injection which would be dairy free.

The pediatrician FLIPPED. He told the pharmacist there WAS no other medication. Period, full stop. When the pharmacist brought up the compound, he grudgingly agreed to change the scrip. Now, as it seems the pediatrician is only too happy to feed my son something he very obviously shouldn't have (and has a history of writing me off as a nervous nelly first time mom), I went for backup. I took my son to the walk-in clinic (where he's been invited, despite having a ped of his own) to get a referral for an allergist. I wanted to get something, ANYTHING on record from a specialist saying my son shouldn't have dairy - so there was more back up than just my "nervous mommy" say so on the matter. The doctor there, after hearing all this mess? Advised me to talk to my son's pediatrician. Thanks. Thanks so much.

So I went to the pediatrician's office today to get the referral. The pediatrician gave me the runaround. Over and over he told me why he wouldn't give us a referral:

Without severe asthma or anaphylaxis, there are NO allergists who would see my son before 3 years old.
What would we hope to gain from the testing. (I can't very well tell him it's to protect my son from him)
He tells me that they go to conferences with allergists, and they talk about how they won't see children under three.
He tells me again that all they would do is what I'm already doing.

And yet, I tell him I want the referral.

He tells me again that they won't see him, he's too young.
He tells me his immune system isn't fully developed yet.
He tells me they won't see him without a life-threatening allergy.
Besides, he adds, they'd all make fun of him if he sent a child this young to them.

I tell them the GP has advised he be sent in for testing (which she did, but advised I get the ped to do the referral).

And I tell you all of the above, because here is the crux of my issue:
The pediatrician tells me that he will gladly write the referral... but *I* have to find an allergist to see him. As the ped suggested I just pick up a yellow pages (which I'm feeling an urge to bring down sharply over his head at this point), I figured I'd do better. I would ask people who have children with food allergies if they can help me help my son.

Does anyone know an allergist in the London, Ontario area who will see a 15 month old child? Or, if you have a wonderful allergist in the general area, but don't know if they'd see my son, and can pass on the information, I'll make calls. I'm planning to spend the weekend gathering information, and on Monday, I'll start calling allergists.

I really appreciate any and all help, including reading this whole huge novel. I truly do.

Thank you so much for your assistance (in advance) and your time (now that it's "wasted.")

~Care

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I am Care. Mama to Little Prince (08/08/08), wife to Skeeve (06/03/06)

Dairy free since 09/09/09

Skeeve is reactive to milk proteins.
Little Prince takes after his daddy.
Mama bear is reaction-free.

ForgetMeNot, I really feel for your situation! Just to let you know, our son was seen by an allergist at 12.5 months of age. Skin scratch tests were conducted on our son at that time - on his back. (It was not easy to go through the testing, but it is important in order to receive a proper diagnosis). We are very happy with the care our son is receiving from his allergist. I know this is not London, but I would highly recommend our son's allergist Dr. Susan Waserman at McMaster University in Hamilton. There may be someone very good in London, and I hope you learn of someone, but if you don't hear of anyone, I think a drive to another city may be required. We only see the allergist every 1 - 2 years, so it's not like we have to make the trek very often, so I don't mind if we know our son is going to receive proper care with a knowledgeable specialist. Our son has a number of health concerns, so he has to see a number of specialists, and they are unfortunately not conveniently located in our city. But, he is seeing a number of amazing specialists, and I personally would rather drive to see someone that provides excellent care and knowledge. Good luck to you in your quest to find someone to see your son. Don't give up!

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14 yr old daughter: no health issues
11 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses

Thanks, Julie.

When my son was still teeny, we took him out to Toronto to consult with Dr. Jack's Breastfeeding Clinic - I have no problem making the drive if it's for a good cause, you know?

Thank you so much for your kind words and for the recommendation. I will absolutely contact Dr Waserman, particularly if there are no other 'pings' closer to home.

In all honesty, at this point I want two things. Primarily, I want someone else with "authority" to look at my son's issues, and likely tell my ped that I'm NOT actually insane. Secondarily, I want to know if my son is allergic, intolerant, and if he's sensitive to other things as well - he had a reaction at Hallowe'en that we're not sure what from and I'd like to sort out. But mostly? I want someone to listen to us, and to help me help my son, and make it more than just 'mom preference' in keeping dairy out of his diet, including medications.

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I am Care. Mama to Little Prince (08/08/08), wife to Skeeve (06/03/06)

Dairy free since 09/09/09

Skeeve is reactive to milk proteins.
Little Prince takes after his daddy.
Mama bear is reaction-free.

I think it's attrocious that this business of pediatricians not realizing when to make referalls is still going on!

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Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb

((hugs)) sounds like a frustrating situation!

I'm guessing that there is a shortage of allergists in London and that the pediatricians have specifically been giving guidelines by the allergists in terms of when to refer patients. Which is why he's asking you to talk to them directly. Sounds like his hands are tied. That said, your pediatrician sounds like a piece of work and I'd be looking for a new Ped!

We saw the allergist at 6 months old (got the referral at 3 months old!) for the same reasons as you described - failure to thrive, constant vomiting/spit-up, terrible eczema. My daughter was 10 lbs at 6 months old. Turns out she's allergic to milk, eggs and whole host of other stuff and was reacting to my breastmilk.

Good luck, I hope you can find some answers!

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6 year old son - eczema and sensitive skin
4 year old daughter - allergic to nuts, peanuts, sesame seeds, mustard and eggs; has outgrown allergies to wheat and legumes (by age 2) and to dairy, soy (by age 3.5).

I'm with you there, Susan. I should have insisted on the allergist after my son was diagnosed FTT on the basis that they couldn't find anything wrong with him - and never tested him for allergies.

I can see what you mean, urmila, and while I can understand "my hands are tied. I've been given these guidelines, and I have to respect them," I can't understand blowing off my concerns about allergies with "babies spit. Stop worrying so much about how much laundry you have!" and then when I (finally) get downright insistent about it, telling me that the other doctors will make fun of him. If he'd said the former, I'd have respectfully disagreed, and asked for this compromise myself. but because he went with the latter, I feel like I'm being dismissed, that my son's health is only important if it keeps me back in his office (and only his office!), and that he feels I can't be trusted to know when something is wrong with my own son. So, yes, frustrating is a good word for it. With the strong family history of dairy issues, I would think that we would be at least decent candidates to see an allergist, but apparently he doesn't think so. I think that a lot of this situation could have been avoided if I hadn't been blown off for a year+ before I got fed up and started insisting. If the ped had his way in this, we would still be feeding my son milk several times daily, cheese at least daily, yogurt every other day minimum, and we'd be eating things with butter and other various milk-things in them, and waiting until my son was 18 months old and his "stomach has turned" and the reflux shouldn't be a problem. I'm most likely going to take my son in to see my GP once we get this referral stuff sorted. If I thought it wouldn't be starting from ground zero and working on up all over again, I'd take him now.

As an aside, I honestly believe that what happened with your daughter was what happened with my son as well - but instead of getting the referral to the allergist, we got dumped onto formula, then ignored for the next 10 months when I mentioned other issues. Needless to say, I'm still more than a little bitter about that.

Thank you for the commiseration. It really is nice to know that I'm not the only one who finds this whole thing maddening!

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I am Care. Mama to Little Prince (08/08/08), wife to Skeeve (06/03/06)

Dairy free since 09/09/09

Skeeve is reactive to milk proteins.
Little Prince takes after his daddy.
Mama bear is reaction-free.

Hi ForgetMeNot,

Your story sure sounds familiar! We got the runaround with my son for the first 2 years of his life. The "spit up is normal" thing made me feel like a terrible mother, until my mother-in-law actually saw him do it once, and screamed that he needed to go to the hospital right away! I sat there calmly and said "This is what I've been telling everyone that he does". Our family doc sent us to a ped, who agreed milk allergy (which an ER doc diagnosed at 11 weeks), and basically told us to challenge him every 3 months. By the time he was 2, the ped had decided that he'd been through enough, and sent us to an allergist.

Things to consider:

My son also had reflux, which muddied the waters a little with respect to his allergy. It was around 15 months that he grew out of it, so the peds aren't totally crazy for not referring you yet. Some kids are just very, very pukey. Of course, it's distressing when you see it 5-6 times a day, and have to change the carpets in your house after only 1 year of having a child ..... but I digress. Allergy testing is an inexact science, and the longer you wait, the more helpful it will be. Age 3 seems to be the age that is accepted in terms of outgrowing childhood food allergies, it they grow out of them at all (but I think this is being challenged nowadays).

Regarding the lactose in the dex suspension, I happen to be a pharmacist. We make Dex suspension with the injectable version of dexamethasone, so there is no tablet in there. If you need Dex again, tell your pharmacist to make it with the injectable version of Dex. However, lactose is a milk sugar, and believe me .. I have checked this out many times, and the lactose in pharmaceuticals is pretty pure. There is not usually any milk protein in pharmaceutical grade lactose. The chance of a reaction from the dex tablets are virtually nil. Dex CAN make you very sick to your stomach though... and the taste is SO bad, that many kids throw up the doses anyway.

We didn't get allergy test confirmation of my son's milk allergy until he was about 2 1/2 years old, but that didn't change anything up until then. We avoided all milk products (including SOY CHEESE!!!!! - which contains casein!), and his growth caught up to normal by the time it was confirmed. Knowing that your son has a milk allergy is NOT going to change the way you do things now, so I wouldn't worry so much about getting a referral right away.

My son is 9 1/2 now, and still has RAST tests >100 for milk, and has had several episodes of anaphylaxis. Interestingly, he never had anaphylaxis to milk during infancy when he was exposed alot more. It wasn't until he was 4, and he had been avoiding it for 3 1/2 years that his accidental exposures revealed a very serious allergy. Every exposure since then has resulted in anaphylaxis.

Anyway, I feel your frustration, and I know you want confirmation, but at this age it's quite acceptable to just carry on with avoidance until testing confirms otherwise.

Good luck in your search for an allergist!

Thanks, Momtobunches, I do appreciate it! I think the thing that really gets me is that I'm just sick of being pushed around, if that makes any sense. I mentioned at two months old that I thought he may have a dairy allergy, and got the brush off. I kept bringing it up, and kept getting brushed off more. Finally, I just cut dairy entirely. My son's spitting up stopped cold. He used to spit several times a day, several days a week, and now... he's spit three times in two months. I'm tired of hearing how he'll grow out of it - over and over again, each time with a different tolerating point - he'd outgrow the spitting at 4mo, then at 6, then at 9, then at 12, and now it's at 18. With everything else going on, I knew something was up. And I kept getting brushed off. I'm just TIRED of it, and at this point, I want to make sure that we get this diagnosed before someone else well-meaning does something to hurt my son.

As far as the pharmacy, I do appreciate the advice! We did go with the compound from the injection, after the pharmacist's suggestion to call the manufacturer turned up a "well... we dunno" on the source of the lactose. She (the pharmacist) didn't seem too impressed with that answer, so we made the call together to put him on the liquid and side-step any risks. ^_^

I can understand why it is the guidelines would be in place with these things. And I can understand why I really shouldn't necessarily be an exception. The thing that tips the scales is the pediatrician's outright disregard for what I say, and the fact that my husband and his brother both have reactions to dairy - that started in infancy, and continue today at 27 and 21 respectively. I want to make sure I have someone with a degree backing my statements with the ped, and I worry that with this being a long-term allergy in his father, and a fast-reaction one in him (as per Hallowe'en when half a dinner roll saw him with an odd rash around his mouth and in his diaper, plus loose stools and erratic behaviour)... I don't want to wait it out and find out the hard way that this is something much more serious than the ped seems to believe.

Does that make sense, or did I just talk in a circle?

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I am Care. Mama to Little Prince (08/08/08), wife to Skeeve (06/03/06)

Dairy free since 09/09/09

Skeeve is reactive to milk proteins.
Little Prince takes after his daddy.
Mama bear is reaction-free.

Momtobunches - interesting, thanks for enlightening us.

Forgetmenot - Julie mentions Dr. Susan Waserman in Hamilton who's wonderful.
Another suggestion is allergist Dr. Harold Kim in Kitchener.

FYI, the question of how old kids must be to see an allergist was addressed by Dr. Wade Watson of Halifax in AL's "Ask the Allergist" column in the Fall issue:

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Allergic to soy, peanut, shellfish, penicillin