EthiopianFood Posted January 27, 2012 Share Posted January 27, 2012 (edited) My friend's 2-year-old has been sick so many times, they are desperate to figure out what is wrong. He has been to an allergist, who said they couldn't do anything for him, that he had no allergies, no CF, no clinically compromised immune system. They are seeing an immunologist next. Here is how she describes his symptoms: Chronic croup, pneumonia and strep multiple times. Strider out of nowhere, tightening airway, lots of mucous and congestion, coughing, crusty eyes and drainage. Dr said if he was older he would be diagnosed as a severe asthmatic. He may have 2 good days before he goes downhill out of nowhere. He is taking Singulair for asthma and Prevacid for possible reflux and neb at least 2x a day. Getting a cold is one thing but he needs epinephrine on hand at all times and had to use it last night because he couldn't breathe. ETA: They also tested his vitamin D levels, and they were INCREDIBLY low, even for a baby. Any ideas? :( Edited January 28, 2012 by RaeAnne Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted January 27, 2012 Share Posted January 27, 2012 Whooping cough?? My son had repeated bronchitis/pneumonia when he had Lyme disease... Quote Link to comment Share on other sites More sharing options...
cin Posted January 27, 2012 Share Posted January 27, 2012 I wonder if the allergist actually tested the child? And maybe an IGg test? Have they done an elimination diet? Do they have animals? Does the child's symptoms get better or worse in certain environments? After eating certain foods? I sent the symptoms list to a friend who has a TON of experience with this kind of carp. If she has any grand ideas, I'll pass them along. I would have taken that child to an allergist. I wonder if it was a pediatric allergist (If that actually matters). I would also recommend that they journal environments and diet to see if there is a pattern to the attacks. (Child is worse when it is raining, better at the mall, couldn't breath after eating chocolate pudding, etc.) Hope something pops up that can truly help them! Quote Link to comment Share on other sites More sharing options...
lisamarie Posted January 27, 2012 Share Posted January 27, 2012 Sounds like allergies to me. I'd get a second opinion and a more thorough allergy testing. I'd also wonder if they have a mold problem in the home. Quote Link to comment Share on other sites More sharing options...
wapiti Posted January 27, 2012 Share Posted January 27, 2012 (edited) . Edited July 12, 2015 by wapiti Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted January 27, 2012 Share Posted January 27, 2012 Have they seen a pediatric pulmonologist? An allergist? Quote Link to comment Share on other sites More sharing options...
Ellie Posted January 27, 2012 Share Posted January 27, 2012 I wonder if the allergist actually tested the child? And maybe an IGg test? Have they done an elimination diet? Do they have animals? Does the child's symptoms get better or worse in certain environments? After eating certain foods? That's what I was thinking. And dairy would be the first food I'd eliminate. Even if it isn't the cause, it is still a mucus-causing food. Quote Link to comment Share on other sites More sharing options...
Tap Posted January 27, 2012 Share Posted January 27, 2012 (edited) Ds17 was sick like that all but a few weeks for the first 2.5 years he was alive. I would have to get up in the middle of the night to give him asthma treatments, and up again an extra hour before work, so I could soak his eyes open in the morning before we left work work/daycare. He had had over 70 medications filled/refilled by the pharmacy by 2.5yo. He would have ear infections for a month at a time, that would take weeks and weeks of antibiotics to kick. He was on 3 different asthma meds at a time. He had allergy pills and eye drops. He had so. many. meds. But without them he couldn't breath and would break out in to hives all over his body, so bad they would bruise his skin. Allergy testing showed him positive to 15 of the 45 items they tested him for. The allergist was so concerned that we were investigating a rotation diet, so he wouldn't start reacting to more foods. I finally decided to put him on a very, very natural diet. I took him off of all sugars except honey. I only gave him the most natural sprouted grain bread I could find. He only got fresh, organic vegetables (you know how hard this was 17years ago!). We did not use any boxes or cans. EVERY item that went into his mouth had a dense nutrient count and was as fresh as I could find. I would spend 2 hours grocery shopping, reading every single ingredient. We didn't even buy regular condiments...Unless I could fine a whole foods version, we just did without or I made my own. If there was a food that was even remotely related to something he tested positive to, we didn't give it to him. Within two weeks he was well. We had always eaten healthy, but not to this extreme. What we finally think happened, we don't know for certain, but it is our best guess.....is that he was allergic to either a common sugar or preservative. Something that would get over looked in a typical diet. There was something that he was reacting to, that we could just not figure out. It was something that the special diet took out of our cupboards. He was on this very restricted diet for about 2 years. Then we slowly introduced more typical foods, and he was fine after that. The reason we know this was the reason, was the speed at which he healed. At 2 weeks, his symptoms were gone. Within a month, he was off of all of his medications. Even his pediatrician at the time, said that there was no way he could have recovered so fast, or just out grown his issues in such a short amount of time. She was amazed and used ds as an example for alternative treatments. Edited January 27, 2012 by Tap, tap, tap Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted January 27, 2012 Share Posted January 27, 2012 Did they do genetic testing for atypical CF? Quote Link to comment Share on other sites More sharing options...
sewingmama Posted January 27, 2012 Share Posted January 27, 2012 Did they do genetic testing for atypical CF? I have to agree -it was the first thing that popped into my mind. If he was mine I would put him on an elimination diet and see how that goes. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted January 27, 2012 Share Posted January 27, 2012 Did they do genetic testing for atypical CF? Yes, this. And I think immunology is a good stop. She needs pulmonology too if that hasn't been done. Allergists aren't experts in asthma and lung disease-she wants ped. pulmonology for that. :grouphug: I know how hard it is to have an undiagnosed, shrug their shoulders and send you on, chronically ill child. I feel for them and hope they get an answer soon. Quote Link to comment Share on other sites More sharing options...
Sandra in FL Posted January 27, 2012 Share Posted January 27, 2012 (edited) I firmly believe that, except for genetic issues, that it all starts in the stomach. If a child isn't digesting and absorbing nutrients, everything is thrown out of balance. To me, the Prevacid is a red flag. A lot of times, the symptoms for acid reflux occurs because of low stomach acid so taking something like Prevacid is not a good thing. I would try either apple cider vinegar or (how old is the child?) Betaine HCL with pepsin, a good all-round digestive enzyme (like Digest Gold) and a good probiotic (like Custom Probiotics powder). I'd also supplement with vitamins/minerals - vitamins A, D, E, C, good b-complex, zinc, calc/mag, selenium, manganese, chromium, molybdenum, choline so they're readily available and fish oil. IOW, try to fix the problems by feeding the body the nutrients it needs instead of treating symptoms. If money is not an issue, a comprehensive test like NutrEval or Metametrix's Pediatric ION would give an overall picture of the child's nutritional needs, functional imbalances, malabsorption/dysbiosis/fatty acids markers via amino acids, vitamins/minerals and urine status. These labs are available through directlabs.com Edited January 27, 2012 by Sandra in FL Quote Link to comment Share on other sites More sharing options...
jplain Posted January 27, 2012 Share Posted January 27, 2012 Is he on vitamin D supplementation? For a kid with symptoms/tendencies like his, getting his vitamin D up won't be a cure-all, but it may be very helpful. However, it'll take more than fortified milk and a little sunshine. Supplementation guidelines based on weight can be found here: link. If your friend pokes around there, she should be able to find some of the research papers that discuss vitamin D for kids with asthma/reactive airways. Quote Link to comment Share on other sites More sharing options...
cin Posted January 27, 2012 Share Posted January 27, 2012 I have not read all the replies, but I got a response from my friend. Please keep in mind that all of her kids have some sort of allergy, including food. She, herself has Eosinophilic esophagitis. Her eldest son has asthma, and she has been through the medical system searching for treatments and diagnoses. Which is why I asked her opinion. well it certainly sounds like severe asthma. allergies can trigger severe asthma attacks. probably all the antibiotics have done a number on the kid's gut too. have they seen an immunologist? I wonder if they just need to go to a different doc? my doc is an allergist and immunologist. he has told me allergy testing is a crap shoot...false negatives and false positives are part of it. he said the only way to really be sure and confirm you have an allergy is when you have a reaction. Having to use an epi is pretty serious. Has the kid had eczema, hives, rashes? that usually goes along with allergies. It sounds like this kid has a lot more going on in the lungs then my kids have had, with the exception of P during an asthma attack. P also has more lung issues when he gets a bad cold. I don't know what the age of the child is, but I was told B had asthma when he was a baby. Severe asthmatic bronchitis maybe? . I'd tell the mom to talk to the nurses at the local children's hospital and ask them for the best immunologist/ allergist in town, and then go for a second opinion. she needs a doc willing to do some detective work and get to the bottom of it, and be looking for any other underlying issues that could be causing or contributing. I sure do feel for her! Quote Link to comment Share on other sites More sharing options...
LNC Posted January 27, 2012 Share Posted January 27, 2012 (edited) Stridor and asthma are different. For stridor that requires nebulized epinephrine for survival, I would read about parathyroid disease. That is what caused the severe chronic strider in my son with a mito disorder. I would see the asthma/allergy as a seperate issue and diagnosis than the reason for the stridor. But that is my dr. mom, uneducated opinion... Edited January 27, 2012 by LNC Quote Link to comment Share on other sites More sharing options...
EthiopianFood Posted January 28, 2012 Author Share Posted January 28, 2012 Is he on vitamin D supplementation? For a kid with symptoms/tendencies like his, getting his vitamin D up won't be a cure-all, but it may be very helpful. However, it'll take more than fortified milk and a little sunshine. Supplementation guidelines based on weight can be found here: link. If your friend pokes around there, she should be able to find some of the research papers that discuss vitamin D for kids with asthma/reactive airways. He has insanely low levels, actually. I'm going to add that to my OP. Quote Link to comment Share on other sites More sharing options...
EthiopianFood Posted January 28, 2012 Author Share Posted January 28, 2012 I have not read all the replies, but I got a response from my friend. Please keep in mind that all of her kids have some sort of allergy, including food. She, herself has Eosinophilic esophagitis. Her eldest son has asthma, and she has been through the medical system searching for treatments and diagnoses. Which is why I asked her opinion. Thank you so much for taking the time to email your friend. I just forwarded her message to my friend. Thank you EVERYONE for your responses. I'm telling her what everyone is saying. They saw a pulmonary specialist today, so I'll update if there is any new information. My first reaction to this was that I assumed allergies as well, so hopefully she is up for the elimination diet. :( Quote Link to comment Share on other sites More sharing options...
EthiopianFood Posted January 28, 2012 Author Share Posted January 28, 2012 Did they do genetic testing for atypical CF? I just asked her, thanks. I hope this isn't it. :( Quote Link to comment Share on other sites More sharing options...
Joker Posted January 28, 2012 Share Posted January 28, 2012 My friend's 2-year-old has been sick so many times, they are desperate to figure out what is wrong. He has been to an allergist, who said they couldn't do anything for him, that he had no allergies, no CF, no clinically compromised immune system. They are seeing an immunologist next. Here is how she describes his symptoms: Chronic croup, pneumonia and strep multiple times. Strider out of nowhere, tightening airway, lots of mucous and congestion, coughing, crusty eyes and drainage. Dr said if he was older he would be diagnosed as a severe asthmatic. He may have 2 good days before he goes downhill out of nowhere. He is taking Singulair for asthma and Prevacid for possible reflux and neb at least 2x a day. Getting a cold is one thing but he needs epinephrine on hand at all times and had to use it last night because he couldn't breathe. ETA: They also tested his vitamin D levels, and they were INCREDIBLY low, even for a baby. Any ideas? :( Have they done any scopes that look at the airway and bronchial tubes? I have a dd with airway malacia and for the first few years (starting at two months old) she was treated for asthma and recurrent croup. She also would go downhill fast if she picked up any kind of cold or illness. Many of the things you listed she had numerous times. Finally a dr. recommended a scope. One of her tubes is twisted and floppy and her airway is smaller than normal. There wasn't much they could do other than treat the symptoms and we tried to keep her away from germs/illnesses but they felt she would outgrow it. She got worse before she got better. She started to have less illnesses around 8 yrs old and now, at 9 yrs, she has only a rare issue. Quote Link to comment Share on other sites More sharing options...
Staceyshoe Posted January 28, 2012 Share Posted January 28, 2012 :grouphug: It is so hard when you know there is something wrong but don't know exactly what you are dealing with. We found out earlier this year that ds has Selective IGA Deficiency which is the most common immune deficiency disorder. It can be diagnosed with a simple blood test. (We found out when he was being screened for celiac disease.) Another thing that comes to mind is eosinophilic esophagitis. When you mentioned asthma and possible reflux, this came to mind. Many children with this disorder do not fit the stereotypical profile, so you may want to join the Yahoo group if you think it is even a remote possibility. I was able to search the Yahoo group for specific information, and the people there were so nice in answering my questions. Hope you find the answers you need soon! Quote Link to comment Share on other sites More sharing options...
Pippen Posted January 28, 2012 Share Posted January 28, 2012 We had always eaten healthy, but not to this extreme. What we finally think happened, we don't know for certain, but it is our best guess.....is that he was allergic to either a common sugar or preservative. Something that would get over looked in a typical diet. There was something that he was reacting to, that we could just not figure out. It was something that the special diet took out of our cupboards. . I've had lifelong allergies of some sort or another from birth. Now it's under control but during my early adult years I struggled with asthma. I would react to a number of common allergens but during one of my pregnancies I recognized that a food (or foods) beyond my usual were triggering asthma but I had a very difficult time finding the causes. One turned out to be oats but the other was an oddball--corn oil. Not in veggie form, or corn flour or corn meal or syrup, but only corn oil. That allergy gradually subsided in terms of noticable symptoms and I never had a problem with it since, nor did I ever discover the reason. Given his age, the severity of his symptoms, and number of possibilities, personally I wouldn't mess around locally if she doesn't get a diagnosis soon. I'd be pursuing referral to a larger hospital (like Mayo Clinic) where they are set up to run patients through all the specialists and testing in a few days time. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 28, 2012 Share Posted January 28, 2012 Sounds like my girls at that age. They have a host of medical issues---LHOH, POLG-1, TK2, and several immune deficiencies and on and on. I would see about a pediatric infectious disease specialist along with a peds. pulmonologist............agreeing with the other poster who said that Mayo Clinic or other big Children's hospital might be the way to go to get answers. Not knowing their diet, milk would be a big one for me to remove right away and go from there as well. Quote Link to comment Share on other sites More sharing options...
Quad Shot Academy Posted January 28, 2012 Share Posted January 28, 2012 I haven't read all the replies, so this might have been mentioned but it sounds like IGA deficiency. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 28, 2012 Share Posted January 28, 2012 IgA and IgG were 2 of the immune deficiencies my girls really struggled with when they were younger. My youngest sounds a lot like this little one. We did lots of doctor and ER visits, neb treatments, infections, etc. Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted January 28, 2012 Share Posted January 28, 2012 Did they do genetic testing for atypical CF? That was my first thought. I would check for atypical CF. A friend just went through this, and the symptoms sound similar. Quote Link to comment Share on other sites More sharing options...
EthiopianFood Posted January 30, 2012 Author Share Posted January 30, 2012 I'm passing this all along to her, and just recommended Children's or Mayo. I'll give an update if she gets any news at some point. Thanks so much for all the suggestions. I didn't know anything to suggest other than allergies, so hopefully this will help her know what questions to ask. Quote Link to comment Share on other sites More sharing options...
TracyR Posted January 30, 2012 Share Posted January 30, 2012 (edited) The only way you can truly rule out allergies is if they do an ellimination diet. Period. All the allergy testing in the world isn't going to tell them a thing that is because allergy testing isn't very reliable in the first place. My youngest has multiple food allergies. We had the skin test, blood work done and in the end it was actually by trial and error with the diet. We had the skin test done and it said she wasn't allergic to milk,. Well when we came home and trialed it, she sure was allergic to milk still! So its all trial and error. Also parasites can definitely make this an issue in the first place. If mom has EE then there is a high chance her children could have the same as well. Her best bet is to go to Cincinnati, OH for their EE clinic. Edited January 30, 2012 by TracyR Quote Link to comment Share on other sites More sharing options...
EthiopianFood Posted May 23, 2012 Author Share Posted May 23, 2012 She has taken him to several doctors since the OP. The main thing is that the immunologist said he has an overreactive immune system. They had a scope done, and they said "He has a floppy epiglodus which will straighten out and get stronger. That can cause the croup. He also has cobble stoning in his lungs and airway which is a sign of all the infections. He had multiple organisms growing in his lungs as well. They did all the way to his lower intestine. No problems GI wise but he is still so young for there to be much damage." Could it still be allergies?? The doctors still haven't been able to give her cause or cure. Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted May 23, 2012 Share Posted May 23, 2012 She has taken him to several doctors since the OP. The main thing is that the immunologist said he has an overreactive immune system. They had a scope done, and they said "He has a floppy epiglodus which will straighten out and get stronger. That can cause the croup. He also has cobble stoning in his lungs and airway which is a sign of all the infections. He had multiple organisms growing in his lungs as well. They did all the way to his lower intestine. No problems GI wise but he is still so young for there to be much damage." Could it still be allergies?? The doctors still haven't been able to give her cause or cure. What are they giving him for that? Quote Link to comment Share on other sites More sharing options...
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