it frustrates me off that a pediatrician can't help me solve the problem with lincoln's lymph nodes/immune system. i have seen 2 pediatricians that have been sure to let me know that she was the expert and that I had nothing to worry about.. his symtoms are all "normal". What makes me even more mad is that because she is a doctor and therefore smarter than me... I listened to them for a year with a horrible feeling in the pit of my stomach that this wasn't normal even if his blood work said so. In all my research i am realizing that drs/peds are not even trained in food allergies... they go to school to treat and medicate symptoms. not necessarily find out the cause. Well that would have been too easy and save a few thousand dollars, trip after trip to the office, having my kids on a constant stream of antibiotics and even a trip to surgery with lincoln. They are licensed to practice medicine and that is exactly what they do. They find a problem and give you medicine to fix your symptom. I am not saying they don't have a place in your child's health care but I am saying that I have learned a lot. This whole time I know something isn't right. I know that what is happening with my baby isn't normal. Does my baby have cancer in his neck? Some crazy childhood disease or is it nothing to worry about?
Our first visit the pediatrician is sure that she knows this problem of his swollen lymph nodes "He has catch scratch fever." Our cat that is still a "teenager" scratches him every day. Why wouldn't she... Lincoln lays on top of her and tries to pull her tail. She's a good cat but my son's health is more important. each day i look at her starting to hate the poor cat thinking she is making my baby sick. guess what our scratchy cat has been rehomed and the problem persists.
I ask for bloodwork, x-rays and allergy testing. all which come back normal. we are still regulars in the office for ear infections, sinus infections, fevers... you name it. my kids immune system seems horrible. my toddler catches everything... even the swine flu! a year later his swollen lymph nodes are huge and bulging out of his neck... the kid is always sick, constantly on antibiotics,has rings around his eyes, gets ear infections, sinus infections, has chronic fluid in both ears and doesn't sleep through the night (wakes up crying and screaming seeming to be in pain).
i asked if it could be an allergy and i am assured that if the blood tests come back for negative for an allery than he is fine. come to find out late set allergic reactions and many allergies can be present and still not show on that test. seriously how infuriating. finally this dr knew i was going to keep sticking my foot in the door and asking questions. she referred us to an ENT probably to get me to leave her alone. The ENT instead of listing reasons for the swollen lymph node said "come back in 2 months and it has grown we will surgically remove the entire lymph node". Okay... but WHY is it there to begin with???? What is causing this and how come nobody will help me figure it out. On the next the lymph node had grown over 2 cm and now this lymph node brought friends. The large lymph node now had a large neighbor and there was what I would describe as buckshot all inside his little neck on both sides. Now fluid is found in both ears and it's causing his eardrums to bulge. we are hoping we have found the problem. lympadenopathy-caused by fluid in the middle ear- body is fighting ear infections constantly therefore suppressed immune system and swollen glands. A date was scheduled for ear tube surgery. Of course i don't want my baby put under. I cried on the way home and wished and hoped and even prayed that he would be okay.
Lincoln wasn't sleeping well. He never had been a good sleeper and I have tried every method from co-sleeping, crib sleeping, toddler bed, sleeping on the couch, the floor, exhausting him at the park, letting him nap more during the day, putting him on a schedule, letting him sleep with his brother, taking away the bottle at night, the Ferber method all the other methods that actually work in a few weeks for normal healthy children. So many long nights of him screaming inconsolably. I was at the end of my rope. i was exhausted and none of us were sleeping. how can you ever feel rested when you have not had a good nights sleep in a year or more? sometimes he would cry for 20 minutes sometimes 2+ hours of him screaming until he finally would vomit up all his milk. My husband and I screaming at each other every night in the middle of the night because our worry and helplessness has turned into anger. exhausted and frustrated we only had each other to take it out on. Lincoln would toss and turn screaming and finally falling asleep in our bed only to wake up an hour later to start all over again. I couldn't do it anymore. My 2 week old was sleeping better than he was. I was told by his pediatrician "his bad sleeping patterns are because you have brought a new baby into the house and that is traumatic for a toddler" ummm are you deaf lady??? I said he has been a horrible sleeper his whole life.
i start looking for information and i am actually starting to think my toddler has a sleep disorder. Then I am thinking maybe he is having night terrors. He seemed to fit the description: waking up screaming, looks frightened, doesn't want to be held, touched, looked at, it can go on for a long time each night. One web site even went as far as to say to "let your child cry it out and watch from afar so they don't think you are attacking them". Are you kidding me? Hell no am I going to let my baby cry while he is frightened even is he is socking me in the face with his cast (that's a whole nother blog).
the surgery date was finally here and though i was nervous i couldn't help but have hope that this would give him relief from his ear pain and my child could sleep. I let my 20 month old be put under and have both ear drums pierced to insert a ventilation tube that will allow the pressure to regulate and fluid to drain. i was told this will provide "instant relief and he will be a new boy as soon as the anesthesia wears off... no more pain and his ear infections will drop dramatically." it went quickly and he woke up wanting to be in daddy's arms. i was so happy that it was over. i just wanted to get home were i could cuddle him and make sure no noises would bother him. the anesthesia made him sick... and cleaning up milk throw up is disgusting (its something i have had to do many many times and even though i have had a lot of practice... curdled milk barf makes me dry heave) so i gave him juice all day and he slept all night long.. wow... these tubes did it... he's cured. Hes drinking capri sun and he likes it! Capri sun day 2 hardly any milk and the boy sleeps again. Now i see 2 months later that this isn't a coincidence. i don't regret the tubes or the surgery because i do think that this has really helped with his hearing.
The sleepless nights continue and so does my search for answers. I have tried a million things and they have all failed. His problems persist and beyond those first 2 nights after the tubes he is still not sleeping.
Lincoln's surgery follow up at the ENT check up rolls around to make sure that his tubes have healed. The fluid is gone (has been since they drained it the morning of surgery) everything is well beyond healed as far as the ear surgery has gone. His lymph nodes that were supposed to go away are still there. If the fluid in his ear is gone and ear infections are gone why do we still have a problem with his huge swollen lymph nodes. I ask the ENT if it could be dairy. His response was quick "Dairy allergies may or may not be to blame. it very well could be a sensitivity or allergy. Eliminate all dairy and see me in 2 months." I left there excited because I wasn't able to make the life change to go dairy free alone. Now I was being nudged by a professional to eliminate another thing off my "could this be it list". I head to the health food store hoping not to overdraw our account and purchase a few things to try: rice milk and a few dairy free foods, fruits, veggies and meat. THE FIRST NIGHT DAIRY FREE HE SLEEPS ALL NIGHT. I wake up freaking out that something is wrong. Is he alive? We run to check and he is fine. of course i think it's just a fluke... until he sleeps the second night and the third and the fourth and fifth...its been 2 1/2 weeks and i feel like we have found some sort of magic spell. i know by the 3rd morning as i lay there crying that this his diet and his problems are connected. of course it is. i am seeing it work. but i also know how challenging this is going to be for our family that lives on dairy, processed foods and baseball park snack bars. dairy lurks in almost everything we normally consume. time for some major changes.
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