It seems for every step we take forward, we take two backward. I hate whining, especially publicly, and I try to keep it in check. But right now I am having a tough time holding it back and being a positive, cheery person. I find that health problems in my child make me negative, grumpy and weepy so visit my blog at your own risk for a bit...
We've been on an elimination diet for four days now. Right? Yeah, I think. Anyway, it's been okay, though we haven't really seen much improvement in the rash department.
Then Ben's teeth started chipping.
Then his eczema started spreading and he's now a head-to-toe eczema baby. The rash on the rest of his body pales in comparison to the mouth and diaper area, but I'm sure it's not comfortable for him.
I'd had enough, so I made yet another doctor appointment for this morning. Ben's lost weight since his last appointment and he's now measuring in the whopping 3rd percentile. He used to measure in the 50th, people. Apparently this isn't cause for concern, or so says our pediatrician. She says they see this happen when children become mobile. But seeing that Ben's been walking for six months now, I just can't wrap my mind around that being the cause. Three weeks ago he was in the 10th percentile. You can't tell me that dropping to the 3rd percentile in three weeks isn't concerning, especially when his teeth are chipping and he has, er, terrible GI problems every single day. Yes, my baby's had diarrhea every day since ten or eleven months old.
His ped says it's not an allergy because the RAST testing is very accurate. I find that hard to believe when every article I read about RAST testing says the exact opposite, but whatever. She says we need to reintroduce dairy and, I suppose, just wait it out. I haven't been trusting of doctors for a long, long time, and this isn't making a case for a renewed trust any time soon.
I'm so fed up. So, so, so fed up. I've just gotta get it out. I want my baby to be healthy and comfortable. Is that so much to ask for?
We will definitely be going the naturopath route soon.
Oh Chelsea! I'm so sorry to hear this. I can only imagine what you're going through. Maybe a second opinion might help? I hope you get answers soon. I feel so bad for you and Ben.
ReplyDeleteRemember, you are your childs voice. You are his advocate. I would say that it is time to find a new Ped. The one you have is not listening to you and is treating the tests not your child. Follow your instincts. Your Dr. works for you. If your childs teeth are chipping and his rash is getting worse then something is not right. Also, 4 days of the elimination diet won't do it. It can take 2 weeks to get the enzyms out of the system.
ReplyDeleteI agree with Amy and Wendy, get a new doctor!! If your gut is telling you something isn't right, then listen to it and go to as many doctors as it takes to find one that also listens and does something about it! Wendy was right when she said you are your son's advocate. You're his voice. You know him better than anybody else. Period. Do whatever it takes, see whoever it takes, and get this sorted out.
ReplyDeleteAs a nurse my gut is screaming GET A NEW DR. I see soooo many that just don't care to be observant. I wish I were there because your pedi would have thrown me out of the office. Has she even checked his blood work to see if he loosing electrolytes from the diarrhea? Look up electrolyte imbalance and affects on the teeth. Our practice has 10 dr.'s in it and I will only see 1 for physicals and will tolerate 2 of them for sick visits. HUGS.
ReplyDeleteCiara
oh that is awful! his teeth are chipping?? that sounds dreadful! definitely time to find a new doctor. i have been battling the bad doctor phenomenon myself lately with treatment of my thyroid. apparently my tests being in the "normal range" mean i can't possible be feeling any symptoms. i'm no expert, but i would agree with suggestions to keep up the elimination diet- if for no other reason than being able to say to the doc- ben hasn't eaten anything except XY and Z during the past 20 days.
ReplyDeleteChelsea, get a second or third opinion. This makes no sense--something is not right here. I am going to ask my pediatrician friend. As a physician I would not trust probably half of the people in my med school class to treat my loved ones. There are a lot of bad doctors and a lot of good ones.
ReplyDeleteChelsea, I'm really sorry to hear this! Although I can see how maybe he's lost weight in the last three weeks because of his dietary changes, I agree that it doesn't sound right for him to drop that much. I'm back to thinking celiac disease is a possibility--all his symptoms line up (diarrhea, rash, mouth sores, weight loss, dental problems). Ask for more specific testing, if you haven't already. A second opinion in general would definitely not be a bad idea, either!
ReplyDeleteOh, no! Poor little man and poor mama! I don't blame you for being negative, it's hard to stay positive when your baby is hurting. I would definately get a second opinion. If it were my little guy I would start with the GI issue. See if you can find a GI specialist in your area. If the diarrhea has been going on this long I wonder if that was the first symptom and these others are following.
ReplyDeleteMy son was in the 75th percentile until 9 months then dropped to the 11th at 1 year. It was a huge drop that scared me but the doc said it was typical of babies moving around. He has since stayed steady at 11-15th percentile, but I would be concerned if he kept dropping, especially with the diet concerns Ben has. Follow your intuition, no matter what the doctor says. You know when something is not right.
One more thing, does your husband go to the doctor appointments with you? When my guy has something bad going on or I just need added back-up, having him there is a HUGE help. He thinks to ask the things I don't think of and gives me the emotional support I need to call the doctor out if needed. Just a thought...I'm sending good vibes your way :)
ReplyDeleteThank you! We are in the process of seeking out a third opinion. Our second opinion came from another person in the practice. Interestingly enough, they argued in the office today over the next actions necessary. Our regular doc didn't seem to think we needed to test his electrolytes (HELLO! Diarrhea for three months straight and you don't need to check his electrolytes?!) but the other doctor convinced her to do it. We'll be heading over to get tested later this afternoon. Keeping my fingers crossed that we finally get an answer and can move forward.
ReplyDeleteAnne - I'm going to eliminate gluten even though he tested negative. He definitely seems to display those symptoms.
Sarah - Yeah, tests shouldn't always be the gold standard. Tests can be inaccurate. What a patient is feeling/displaying should be more important in my opinion.
Ciara - Interesting about the electrolyte imbalance connection to the teeth. Thanks for pointing that out!
Thanks Anna! He does; he's never missed an appointment. He's definitely more vocal than me! It's good to have them there, that's for sure.
ReplyDeleteI'm so sorry Chelsea. I would be the same way if it were one of my children. Hang in there, I know from experience that doctors don't know everything!! Definately research on your own and push if you feel like something is wrong.
ReplyDeleteWhen you asked about a GI Dr or Dermatologist what did the pedi say? Did they say they did not feel like he needed to go? What I would do (but I love to put Dr.'s in their place when they are wrong... ;o) it's the nurse in me) is go to the follow up appointment regaurding the blood work and state "I want a referal to a GI Dr." don't take no for an answer. Then after they refer you leave the group and find a new pediatrician to follow up with after the specialist. You get what you want and you don't have to worry about arguing with the 3rd opinion.
ReplyDeleteHUGS, Ciara
Chelsea,
ReplyDeleteI have to tell you, I LOVE med pediatrician, and because of "standards" and "tests, it took until 9 months for her to refer us to a specialist, then he was a jerk, and said he all of the things my son was going through were "normal" per tests. I finally said enough is enough, called my ped, and she found the TOP ENT in our area. He thought it was adenoids, still had problems. Went for a sleep study, my son stopped breathing 24 times an hour each night....which I kept telling them. During his second surgery, my very experienced ENT did some extra searching, and found a very rare problem with my son's epiglottis. I know this is very different, and I KNOW you are already seeing someone and you are doing everything you can for Ben. But really, a ped may not be able to find your answer. You may want to start looking for some specialists, maybe even doing searches and finding support groups with similar symptoms. Good luck and I will send some prayers your way. There IS a reason. I started giving up hope, especially after the first surgery, but it never got better, only worse. Don't give up, and don't let those Dr.'s bully you. Who cares if they try to make you feel stupid. YOU pay THEM. Not the other way around. Oh, and I also went on the local website in my area that rated local dr.'s. You may want to try this as well!
poor little guy!! Keep pushing for answers! an online friend of mine is very knowledgeable about celiac and gluten intolerance, check out her blog - http://glutenfreefoodsrock.blogspot.com/2009/11/testing.html
ReplyDeleteThat's the link to a post about testing.
*Hugs* That sounds very scary. I hope you get some answers--keep pushing until you get them! I think there are some doctors assume every mother with concerns is just worrying to much, instead of listening to the concerns in the first place and taking them as seriously as the parent does.
ReplyDeleteThanks everyone! Vicki, thanks for sharing your story. Perseverance is really important! Good for you for sticking with your guns. I definitely hope it works out as well for me.
ReplyDeleteDeann - Thanks for sharing the gluten free site!
Ciara - I haven't asked to see a GI specialist yet. They mentioned sending us to a dermatologist and we MIGHT go that route, but I think this is going to require more than a dermatologist. I think this is going to require a doctor capable of seeing the big picture, but we'll see once the blood tests are back. Thanks!
Chelsea-Please go see a GI! I know this is so frustrating for you, Tim and Ben. I am so sorry Ben is going through all of this. I KNEW something was wrong with Trey when he cried non-stop for 5 months. You met him, you know what I am talking about. It is terrible to see your child in pain not knowing what is going on and feeling like it is a battle with the doctor everytime you go. Stick with it girl-when things are figured out you will be so happy that you were your son's voice and didn't give up.
ReplyDeleteWhen he was finally diagnosed with Hydrocephalus and had brain surgery I thought he was healed and he would be a happy little boy I knew he could be. As of now Trey still sees a neurologist, pulmonologist, GI, his ped., physical therapist, occupational therapist, and speech therapist (to be started soon). And he needs all of them. We see some of them weekly, some monthly, and some every 6 months. My point it it may not be able to be addressed by just one doctor. A GI will be able to help with the diarrhea (Trey used to have it every day 6-8 times a day) and maybe some insight to the rash. I really hope you find an amazing doctor that you feel listens to you and makes you feel like there is a reason for all of this. Ben is an amazing little boy and you are an amazing mom!! (I am sure Tim is awesome also, but I have never met him ;)
I am sorry if this is all over the place Trey is trying to delete everything I type and Ryne is getting out some pent up energy he acquired in school :)
I hope you get some answers soon-maybe a natural healing doctor would be helpful...
Love you girl!!!
I keep checking to see how the blood tests came back... Did I miss them? Ben is still in my thoughts and prayers! I hope he starts feeling better soon!
ReplyDeleteoh Chelsea! I'd get a third opinion, not in the same practice. Its hard to see our babies hurting. Good for you for keeping up the fight. I will keep sending you good thoughts. :-)
ReplyDeleteSav from I village here.....
ReplyDeleteHey definitly try natropath if you can afford it, it's not that costly but more than a co-pay typically, some insurances do pay out on it. They really see the whole picture, I promise!
I'm almost 100% sure your son has food intolerance, hands down. There are two types of food allergies IgE and IgG. Search for it on google, it may make sense of all this. I don't think M.D.'s are trained to treat or recognize delayed reactions, it doesn't make them bay doctors, it's just not part of their schooling.
I am not sure which elimination diet your doing with him, I believe there are several, but I agree with pp who said it can take up to two full weeks before the reactions can go away.
If you would like more info, I've personally gone through the IgG diagnosis, testing, and elimination.
Email me at savsblabla@gmail.com
I hope you find a better doctor. They sound like a quack. Keep us updated! I feel so bad for your little guy. I hope he feels better!
ReplyDelete