Mom-ninja. Posted January 13, 2011 Share Posted January 13, 2011 (edited) My middle ds. Oh. Sigh. I've written about him before. He (so far) has had 8 melt downs today. I may have lost count actually. At least 8. Melt down equals crying, whining, rolling around on the floor, covering ears, and more. Every little think sets him off. It takes him forever to stop the melt down. His block creation fell down and he cried for over 30 minutes to give an example. He is so so so so so whiny. All he does is whine. So I've spoken to his Dr. He has been evaluated by an OT. She said he scored average on her test. She recommended doing the sensory intensive eval. However, she never contacted me back despite repeated calls. :glare: Not very professional. We have started seeing a child psychiatrist. So far we've only been once. We are implementing the plan he suggested to get ds over his fear of toilets. We go back in 3 weeks. During the first appointment I filled out a behavior chart. The Dr. said according to what I had marked ds may have ADD, but I didn't quite mark enough things to make him want to look into it at this point because ds is only 6. Well, I can say that I was conservative when I was filling out the sheet. I *could* have marked more. I try to give ds the benefit of the doubt that he just has normal 6 yr old boy behavior. Yet, oh oh oh. Every day is a struggle. I'm so tired of the whining, crying, and melt downs. So tired of it. We have also seen an ENT because ds has chronic chapped lips. The ENT says he has enlarged adenoids and they are causing blockage. This Dr's specialty is sleep deprivation and the behavior problems caused by it. He took a history of ds's behavior and he believes that his behavior can be improved by removing his adenoids. He told me that ds is not getting quality sleep and thus the behavior issues. He states that many times in his practice he has seen children with an ADD/ADHD diagnosis that "goes away" after surgery. Ds also speaks in a high pitch tone and it's very nasal. Makes the whining that much worse, imo. Dr. says that is also due to his airway blockage. Dh and I haven't scheduled surgery for ds. We decided to try the OT route. Well, that didn't work out for no fault of my own. I'm so irritated at that office. I'm just wondering in which direction I should go. It's clear to me that I *have* to something. I keep trying to take life day by day and wait for him to just grow out of it. Yet, my sanity is thin. Do I try to find another OT (not an easy task), discuss things with the psychiatrist, go back to the ENT and schedule surgery? For the past month or so I have been thinking to myself, "Surgery would be so worth the chance of it perhaps helping." Is the risk of surgery really worth the chance that ds's behavior will improve. I do know I'd try surgery before meds. Meds would be last. He's not a happy little boy. He's told me he doesn't think I love him because I get mad at him so much. I'm not a happy mom. When I ask dh he just shrugs and says, "Don't know." Edited January 13, 2011 by Kleine Hexe Quote Link to comment Share on other sites More sharing options...
jenn- Posted January 13, 2011 Share Posted January 13, 2011 I would get a second opinion from another ENT. I would be inclined to leave out the behavior issues and see if they still recommend removing his adenoids. I would think enlarged adenoids would be a problem whether or not there are behavior issues. My DD had to have hers removed (along with her tonsils) because of illnesses and recovery was not bad. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted January 13, 2011 Author Share Posted January 13, 2011 (edited) I would get a second opinion from another ENT. I would be inclined to leave out the behavior issues and see if they still recommend removing his adenoids. I would think enlarged adenoids would be a problem whether or not there are behavior issues. My DD had to have hers removed (along with her tonsils) because of illnesses and recovery was not bad. The only problem (besides behavior) from the adenoids are his chapped lips. He has never had problems with infections or chronic illness. Oh, forgot to about one. He has chronic bad breath. His dentist says there's nothing in his mouth causing it and suggested allergies. Edited January 13, 2011 by Kleine Hexe Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 13, 2011 Share Posted January 13, 2011 The only problem (besides behavior) from the adenoids are his chapped lips. He has never had problems with infections or chronic illness. Oh, forgot to about one. He has chronic bad breath. His dentist says there's nothing in his mouth causing it and suggested allergies. There is something with bad breath with enlarged tonsils and adenoids. I wish I could remember what it was. I think I probably read about it when I was looking into the enlarged tonsil and ADHD connection.:confused: The enlarged adenoid and tonsil relationship with behavior is real. Research shows that about 1/2 of kids with enlarged tonsils and ADHD symptoms have those symptoms gone one year after having their tonsils removed. It's pretty significant, isn't it? But then weighing it against the risks of anesthesia makes it a tough decision, even though it is a relatively simple procedure. I have two dd with enlarged tonsils and they are my two with the ADD or ADHD symptoms. I have taken the oldest to be looked at by the ENT, but he said her tonsils weren't big enough to cause any problems and her sleep study was normal. The younger dd really has huge tonsils; they touch her uvula (am I spelling that right?). She is meltdown prone. I need to bring her to the ENT but she is highly sensitive and doctor-phobic so I'm waiting for a time when things are a little more stable in her life. And even though we have an awesome ENT nearby, I would be inclined to go to a children's hospital for her in case we need to do a sleep study. Is there anyway you can get him a sleep study? That would give you more information on what you're dealing with. It could be apnea or low oxygen levels, things you would really want to know. It's obvious you are covering all your bases with the behavioral and medical aspects. You already know that the adenoids are a problem but you may need to find out a little more so you feel at peace with your decision. :grouphug::grouphug::grouphug: I feel so much sympathy for you dealing with those meltdowns. I know how it can affect every aspect of your life, everyday. Quote Link to comment Share on other sites More sharing options...
Leonor Posted January 14, 2011 Share Posted January 14, 2011 It could be allergies/sensitivities both environmental and food. Take a look at "Is This Your Child, Discovering Unrecognized allergies in Children and Adults: by Doris Rapp "SuperImmunity for Kids" by Dr. Leo Galland---was head of medical research at Yale Institute of Immunology. This is a great book in general. Quote Link to comment Share on other sites More sharing options...
gingersmom Posted January 14, 2011 Share Posted January 14, 2011 From what you wrote your son is seriously in need of Occupational therapy. I would check out The Out of Sync Child (they also wrote some other books with similar titles). A lot of what you describe sounds like my son when he was very young. We started OT at 18 months and ended when he was 7/8. It was the best thing I could have ever done. I can't even put into words the difference it has made in his personality/life. I would avoid surgery at all costs. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 14, 2011 Share Posted January 14, 2011 Well, I have done the tonsils and adenoid thing with 4 different kids---3 of my own and 1 foster. NEVER regretted it for an instant. Our ENT said the same thing that he could "cure" many cases of ADD/ADHD just by removing the tonsils and adenoids. He said that it really caused a lot of sleep issues in kids and therefore the ADD/ADHD behavior. This is A reason for surgery but the high pitched/nasal voice could become more of a social issue as he gets older. Just another thing to consider. Will your insurance pay for a 2nd opinion? If so, you might get one. The doctor we used was highly regarded and I fully trusted him so we did't go for the 2nd opinion. Now days most doctors are more hesitant to suggest surgery so likely your son really could benefit from it if the doctor thinks so. For recovery, I found that there were 2 KEY things: 1. GIVE the pain meds AS SCHEDULED for the first several days, up to a week. Don't wait for the child to be in pain before giving them as then they have to wait for them to kick in. Just give them as directed---even setting an alarm for the middle of the night to give them. 2. Have them DRINK as much as they will---at that point I didn't care WHAT it was, just so long as they drank. With these 2 things, our recoveries here were very minimal. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted January 14, 2011 Author Share Posted January 14, 2011 It could be allergies/sensitivities both environmental and food. We have had him tested and we already have eliminated/avoid certain foods. From what you wrote your son is seriously in need of Occupational therapy. I would check out The Out of Sync Child (they also wrote some other books with similar titles). A lot of what you describe sounds like my son when he was very young. We started OT at 18 months and ended when he was 7/8. It was the best thing I could have ever done. I can't even put into words the difference it has made in his personality/life. I would avoid surgery at all costs. I have read that book and quite a few more. That is why I had him evaluated by an OT. She basically told me that he tested average. When I questioned the results and asked if there was another evaluation, she said yes, and then I never heard from her again. Trying to go the OT route has been disappointing and has not been helpful. I need to start from scratch trying to find another OT. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted January 14, 2011 Author Share Posted January 14, 2011 How would I go about asking for a sleep study? Quote Link to comment Share on other sites More sharing options...
sbgrace Posted January 14, 2011 Share Posted January 14, 2011 It seems to me it would be worth doing a sleep study--or has the ENT already done that? If you've got a sleep study showing disrupted breathing in sleep and the surgery would likely improve that I would likely do it. I'm not sure if you know he's got a sleep quality issue or not? My son who has the same volatility issues has some "stuff" going on on but it's not sleep. We did have a sleep study though. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 14, 2011 Share Posted January 14, 2011 How would I go about asking for a sleep study? Call the ENT's office and ask for one. That should do it, esp. if the ENT thinks that it is interferring with his sleep. Just tell them that you want to make sure before you do the surgery. If that doens't work, your regular doctor's office should be able to schedule one for you. Are you near a Children's hospital? That makes it easier. Quote Link to comment Share on other sites More sharing options...
mcconnellboys Posted January 14, 2011 Share Posted January 14, 2011 I have also heard stories where adenoids and sleep deprivation were the cause of the sort of problem you describe. The surgery worked for those folks that I know, so it may well work for you, too.... Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 14, 2011 Share Posted January 14, 2011 (edited) Like Regena said, the sleep problem would be a symptom, not the cause. The bad breath is from stuff putrifying in the gut. It means his gut is a mess. You should read the book "Is This My Child?" Lots of cause effect stuff. You probably haven't eliminated all he's allergic to. Not to be annoying, but food allergies can be reversed by improving the digestion. (btdt) Enlarged adenoids are a sign of allergy. In other words, you're going in circles. Why didn't the OT look at sensory stuff in the first place? OT will give you tools to help calm down the sensory stuff and start working on it, but that doesn't replace dealing with the allergy and gut problems. I'm not fanatically opposed to the surgery, but it doesn't solve the allergy and gut problem. Eating according to the rules of food combining and cutting out white flour will help immensely. You can put him on a good probiotic (we use Primadophilus, comes in chewables or capsules) and give him fruit for all snacks between meals. The fruit will help clean out his gut and give him enzymes to rebuild digestion. Eat a salad every day. Not sure of his age, but by 5 my dd was eating a 3 cup salad every night. 1 1/2 cups of leafy greans plus 1 1/2 cups of regular veges (tomatoes, bell pepper, cucumber, celery, etc.). His lips could be chapped if he's licking them a lot, needs to drink more water, is low on vitamin E, or any number of reasons. The mouth breathing would make his mouth dry, and then they get the sensory quirk of licking their lips. Just watch to see if it's happening. Give him more water during the day. Apply organic lip balm, not petroleum. Edited January 14, 2011 by OhElizabeth Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted January 14, 2011 Author Share Posted January 14, 2011 Like Regena said, the sleep problem would be a symptom, not the cause. The bad breath is from stuff putrifying in the gut. It means his gut is a mess. You should read the book "Is This My Child?" Lots of cause effect stuff. You probably haven't eliminated all he's allergic to. Not to be annoying, but food allergies can be reversed by improving the digestion. (btdt) Enlarged adenoids are a sign of allergy. In other words, you're going in circles. Why didn't the OT look at sensory stuff in the first place? OT will give you tools to help calm down the sensory stuff and start working on it, but that doesn't replace dealing with the allergy and gut problems. I'm not fanatically opposed to the surgery, but it doesn't solve the allergy and gut problem. Eating according to the rules of food combining and cutting out white flour will help immensely. You can put him on a good probiotic (we use Primadophilus, comes in chewables or capsules) and give him fruit for all snacks between meals. The fruit will help clean out his gut and give him enzymes to rebuild digestion. Eat a salad every day. Not sure of his age, but by 5 my dd was eating a 3 cup salad every night. 1 1/2 cups of leafy greans plus 1 1/2 cups of regular veges (tomatoes, bell pepper, cucumber, celery, etc.). His lips could be chapped if he's licking them a lot, needs to drink more water, is low on vitamin E, or any number of reasons. The mouth breathing would make his mouth dry, and then they get the sensory quirk of licking their lips. Just watch to see if it's happening. Give him more water during the day. Apply organic lip balm, not petroleum. The ENT told me that his adenoids will always be enlarged due to environmental allergies. He said it is impossible to do much against those because of where we live. I do know about fixing digestion to help with allergies. We're working on that with my oldest who has a lot more allergy problems, or should I say different allergy problems. Both of them are on probiotics we get from the Dr. Where do you get Primadolphilus? I spend $68 for a 60 gram bottle. Would be nice to find something more affordable. I'm also working on him eating a larger variety of fruits and veggies. I have started a rule that he must eat a fresh veggie with every meal. What are the food combining rules? I've already cut white flour from the house due to my oldest being allergic to wheat. As for drinking, my boys only drink water during the day. At meal time they may choose water or another drink. He seems to drink often enough during the day. I'll try to make a note of how often he drinks tomorrow. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 14, 2011 Share Posted January 14, 2011 Actually, eating the fruit with the meal is the opposite of what you want to do. The fruit digests differently from the protein or starch. We eat either fruit or protein for breakfast, not both. Lunch is starches and high starch veges (say a baked potato and brown rice, grated carrot, nuts, etc.). Supper is low starch (salad, wild rice, beans, etc) and proteins. Fruit and just for snacks. Primadophilus should be in the refrigerator section of your health food store. I used to take a fancy brand (grown in soil or some such thing) from a doctor. When I dumped him (and his expensive vits), I started on this. It is recommended widely as being about the most effective product around. My nutritionist recommends it, but I know Mary Shomon mentioned it in a book. I have a friend whose dh has IBS, and they told him to take this brand. It's about $35 for a huge bottle, should last you quite a while. I take 2 at breakfast, lunch, and dinner. For a young child maybe do 1,1,1. If he's too young for capsules (they're very, very small), then it comes chewable. He might surprise you and be able to do the capsules. Yeah, allergies are a pesky topic. We got rid of mine, but it took a lot of work (and money with a nutritionist) working on my immune system. I guess see how far you can get and then decide. If you get that gut working better, the nasal symptoms and drainage should improve. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 14, 2011 Share Posted January 14, 2011 Like Regena said, the sleep problem would be a symptom, not the cause. The bad breath is from stuff putrifying in the gut. It means his gut is a mess. His lips could be chapped if he's licking them a lot, needs to drink more water, is low on vitamin E, or any number of reasons. The mouth breathing would make his mouth dry, and then they get the sensory quirk of licking their lips. Just watch to see if it's happening. Give him more water during the day. Apply organic lip balm, not petroleum. The bad breath could be coming from infection in the adenoids/tonsils themselves and not just the gut. The dry mouth/licking lips could come from the mouth breathing as if his tonsils and/or adenoids are very large then he might not be able to breath through his nose normally and must mouth breathe. I am all for getting a 2nd opinion on the surgery and going from there. I have just seen the HUGE difference the surgery made here and the younger you do it (if it is needed) the easier it is to recover. Quote Link to comment Share on other sites More sharing options...
Team Litwin Posted January 14, 2011 Share Posted January 14, 2011 We had our ds do a sleep study and found out he had apnea. They removed his tonsils and adenoids and we did see some improvement in behavior. Good luck! Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 14, 2011 Share Posted January 14, 2011 We got our referral for a sleep study from our ped. I did it that way so we could get started on it because there was quite a waiting time for the ENT appointment. There can be a long wait for a sleep study in a children's hospital. You may be able to call and make the appointment first and then get the paperwork you need in the meanwhile. Thinking of what Ottakee mentioned...You said you ds doesn't have much of a problem with sickness and infection, if I remember correctly. My oldest really never got sick either, but she has cryptic tonsils with a chronic low-grade infection in one of them that was picked up in an MRI. Antibiotics can't do much for these kinds of things because the bacteria hide out in the crypts. So, it's possible to have an infection without knowing it if your immune system is strong enough to keep it at bay. My dd doesn't have mouth odor but I imagine something like this could be smelly. Quote Link to comment Share on other sites More sharing options...
PeterPan Posted January 14, 2011 Share Posted January 14, 2011 Ottakee-That's really interesting! Thanks! So do the tonsils LOOK a certain way if they have these low grade infections going on? How do they identify it? Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted January 14, 2011 Author Share Posted January 14, 2011 I've called the ENT and left a message for the Dr. that I'd like a sleep study. We were there last August. If he won't do it I'll call our family Dr. I'll feel better doing the sleep study. I hope it will give me more information in figuring out if his behavior is caused by sleep issues. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 14, 2011 Share Posted January 14, 2011 They can have a pitted look with white cottage cheese type stuff on them. Not sure about the adenoids. Certainly ask the ENT. Certainly a low grade infection could affect mood, sleep, and weight as well. , Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted January 14, 2011 Share Posted January 14, 2011 Can you try antihistimines for a month and see whether they help? If so, it means that the allergies were actually dominant in the situation. Allegra is the one I would ask for. It doesn't make you drowsy and it's very effective, while being quite mild. Zyrtec causes drowsiness and sometimes contributes to extreme grouchiness. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted January 14, 2011 Share Posted January 14, 2011 They can have a pitted look with white cottage cheese type stuff on them. Not sure about the adenoids. Certainly ask the ENT. Certainly a low grade infection could affect mood, sleep, and weight as well., Before we even went to the ENT but after I got the MRI results, I asked our ped, "Could she have a chronic low-grade infection? She's pale, has dark circles under her eyes, and is tired." The answer was "no," but, for me, it still made sense. Then, when we went to the ENT, he said, "That spot in her tonsil on the MRI is due to a chronic, low-grade infection." But, he said that wouldn't account for the other stuff. Dd's tonsils look normal, though slightly large, to me. I could never tell which tonsil was the one with that infection. Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted January 14, 2011 Author Share Posted January 14, 2011 Can you try antihistimines for a month and see whether they help? If so, it means that the allergies were actually dominant in the situation. Allegra is the one I would ask for. It doesn't make you drowsy and it's very effective, while being quite mild. Zyrtec causes drowsiness and sometimes contributes to extreme grouchiness. We've done that. There was not any significant change in his adenoids. Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted January 14, 2011 Share Posted January 14, 2011 I'm not trying to make any surgery sound trivial, but my son had an adenoidectomy last winter, at 7, and it made a world of difference. It was a 15 mintue surgery, and he was playing by that afternoon. We did have a sleep study that showed some mild snoring. The difference in his behavior was obvious within three weeks! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 14, 2011 Share Posted January 14, 2011 Here too, not to trivialize the surgery but my daughter wanted me to stop at PIZZA HUT on the way home from surgery as that is what she wanted. She was eating totally normally in less than 3 days---the key is to stay on TOP of the pain with the med---again that round the clock, mom sets an alarm thing:glare: I'm not trying to make any surgery sound trivial, but my son had an adenoidectomy last winter, at 7, and it made a world of difference. It was a 15 mintue surgery, and he was playing by that afternoon. We did have a sleep study that showed some mild snoring. The difference in his behavior was obvious within three weeks! Quote Link to comment Share on other sites More sharing options...
Mom-ninja. Posted January 14, 2011 Author Share Posted January 14, 2011 We have an appointment to see a sleep specialist on Feb 14th. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted January 14, 2011 Share Posted January 14, 2011 We have an appointment to see a sleep specialist on Feb 14th. GREAT. I know that sounds like a long time away but for a specialist, isn't bad. If you are flexible, you can even call the office and ask to be put on a waiting list. Just tell them that you need X amount of notice to come---for us I did the amount of driving time plus 15 minutes. That got us into LOTS of specialists much quicker. They like knowing that if someone cancels just 1-2 hours before their appointment time that they can fill it. Doesn't always work but if you are flexible (you can always say no and your original appointment will stand) it can be nice. Quote Link to comment Share on other sites More sharing options...
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