Guest guest Posted August 8, 2009 Report Share Posted August 8, 2009 Hello plagio support group! My name is Amy and our 7.5-month-old daughter, Zia, is scheduled to be fitted for a helmet/band on Monday. So we are still in the relatively early stages of this process . . . I have a handful of questions to ask the group, but let me first share a brief version of our story: Our pediatrician alerted us about some mild asymmetry of her head during her first visit, and advised us to do some neck stretches and to switch which side she slept on relative to me. We also tried using a sleep positioner (wedge) starting at 3.5 months, and a Bumbo for sitting at 4 months, and have tried to carry her, and keep her off her back, as often as possible. Regardless of what we did, she almost always ended up on her back looking straight up, and her head did eventually flatten to a noticeable (and alarming to me) degree. We are presently working with a craniosacral physical therapist twice a week. Despite our efforts, she does indeed have mild/moderate plagio (don't know exactly how it will be classified since no one has done any official measuring, which presumably will be done on Monday), our pediatrician has given us the script for a helmet, and so we are moving forward with the process. So here are my questions: - Does anyone have experience with the Hanger cranial band? As far as we know, this is the only locally available option for us (we live in Chico, CA, about 90 miles north of Sacramento). - In addition to her flattened head, Zia's has a deviated gluteal fold (i.e. her butt crack veers off to the right at the top). Has anyone else had this issue? I'm not sure if it is related or coincidental to the plagio, but the physical therapist is working on this also since her sacrum/pelvis seems to be tilted and there is tightness in her side bending. - What type of specialist (doctor) do we want to be working with? We are currently seeking an appointment with a neurosurgeon in Sacramento. Is this the right direction to be going? It is apparently the standard referral from our pediatrician so we are pursuing it, at least for the moment. - I am feeling a great deal of regret and guilt at not acting sooner and feeling like I've failed in some important way as Zia's mom. Any suggestions about dealing with this would be greatly appreciated. I'm sure I am forgetting some other important questions, but I will send them out in another email when I think of them. In the meantime, I am so grateful to have connected with this community and look forward to your responses. Amy Chico, CA pictures of Zia attached (one front view, and one side view). I think the side view shows the flattening, though I've mostly avoided taking side-view pictures BECAUSE of her head shape, so I have a limited selection from which to choose. 2 of 2 Photo(s) IMG_9426.jpg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2009 Report Share Posted August 9, 2009 Hello, Welcome to the group. My 7 month old has been in a Hanger band for 3 weeks now. A lot of people seem to give Hanger a bad rap, favoring CT or StarBand. The closest CT to us is two states away and our insurance only approved Hanger, so that's who we have gone with. So far, I have had a WONDERFUL experience. I see so much improvement in my son's head. I noticed a difference in a week and it keeps getting better. My son has all brachy and very very mild plagio. I would not have banded him for just the plagio. HOwever, his brachy is/was pretty severe. So, while I can't speak direclty about the Hanger facility in Chico California, the one I " m using in Ohio is great. My ortho is very experienced and knows what he's doing. We aren't too far into treatment, so we will see how things turn out. I don't regret going with Hanger for a second. About your daughter's butt crack, my son has something similar. We never got an actual " diagnosis " but he has a very long butt crack. It's maybe 1-1.5 inches longer then a normal one. I know that doesn't sound like much, but it's considerable on a little bottom:) His little crack sticks out of all his diapers. We actually had to take him to have an ultrasound because the doctor was concerned he had a mild form of spina bifeda. Turns out he was ok, but that is interesting. I also felt guilt and thought it was my fault that my son's head is the way it is. I also have a 2.5 year old and I just couldn't give my youngest as much attention as I gave my first. I thought I had neglected him. The doctors don't know why it happens to some kids and not others who spend just as much time on their backs. It's not your fault. When she gets her helmet on and you see her head making improvements week by week you will feel so much better and know you made the right choice. Good Luck with everything > > Hello plagio support group! > > My name is Amy and our 7.5-month-old daughter, Zia, is scheduled to > be fitted for a helmet/band on Monday. So we are still in the > relatively early stages of this process . . . > > I have a handful of questions to ask the group, but let me first > share a brief version of our story: Our pediatrician alerted us about > some mild asymmetry of her head during her first visit, and advised > us to do some neck stretches and to switch which side she slept on > relative to me. We also tried using a sleep positioner (wedge) > starting at 3.5 months, and a Bumbo for sitting at 4 months, and have > tried to carry her, and keep her off her back, as often as possible. > Regardless of what we did, she almost always ended up on her back > looking straight up, and her head did eventually flatten to a > noticeable (and alarming to me) degree. We are presently working with > a craniosacral physical therapist twice a week. > > Despite our efforts, she does indeed have mild/moderate plagio (don't > know exactly how it will be classified since no one has done any > official measuring, which presumably will be done on Monday), our > pediatrician has given us the script for a helmet, and so we are > moving forward with the process. > > So here are my questions: > > - Does anyone have experience with the Hanger cranial band? As far as > we know, this is the only locally available option for us (we live in > Chico, CA, about 90 miles north of Sacramento). > > - In addition to her flattened head, Zia's has a deviated gluteal > fold (i.e. her butt crack veers off to the right at the top). Has > anyone else had this issue? I'm not sure if it is related or > coincidental to the plagio, but the physical therapist is working on > this also since her sacrum/pelvis seems to be tilted and there is > tightness in her side bending. > > - What type of specialist (doctor) do we want to be working with? We > are currently seeking an appointment with a neurosurgeon in > Sacramento. Is this the right direction to be going? It is apparently > the standard referral from our pediatrician so we are pursuing it, at > least for the moment. > > - I am feeling a great deal of regret and guilt at not acting sooner > and feeling like I've failed in some important way as Zia's mom. Any > suggestions about dealing with this would be greatly appreciated. > > I'm sure I am forgetting some other important questions, but I will > send them out in another email when I think of them. In the meantime, > I am so grateful to have connected with this community and look > forward to your responses. > > Amy > Chico, CA > pictures of Zia attached (one front view, and one side view). I think > the side view shows the flattening, though I've mostly avoided taking > side-view pictures BECAUSE of her head shape, so I have a limited > selection from which to choose. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Amy, I struggled with the same emotions you're going through. You absolutely have not failed in any way as a mother. You've stayed on top of things. We went through a very similar timeline of events. Your little girl is beautiful! Hang in there, I know it is hard, but, trust me, it gets easier. Once she has the band and you start to see results, you will feel relief. All my best, Jocelyn ton, Illinois > > Hello plagio support group! > > My name is Amy and our 7.5-month-old daughter, Zia, is scheduled to > be fitted for a helmet/band on Monday. So we are still in the > relatively early stages of this process . . . > > I have a handful of questions to ask the group, but let me first > share a brief version of our story: Our pediatrician alerted us about > some mild asymmetry of her head during her first visit, and advised > us to do some neck stretches and to switch which side she slept on > relative to me. We also tried using a sleep positioner (wedge) > starting at 3.5 months, and a Bumbo for sitting at 4 months, and have > tried to carry her, and keep her off her back, as often as possible. > Regardless of what we did, she almost always ended up on her back > looking straight up, and her head did eventually flatten to a > noticeable (and alarming to me) degree. We are presently working with > a craniosacral physical therapist twice a week. > > Despite our efforts, she does indeed have mild/moderate plagio (don't > know exactly how it will be classified since no one has done any > official measuring, which presumably will be done on Monday), our > pediatrician has given us the script for a helmet, and so we are > moving forward with the process. > > So here are my questions: > > - Does anyone have experience with the Hanger cranial band? As far as > we know, this is the only locally available option for us (we live in > Chico, CA, about 90 miles north of Sacramento). > > - In addition to her flattened head, Zia's has a deviated gluteal > fold (i.e. her butt crack veers off to the right at the top). Has > anyone else had this issue? I'm not sure if it is related or > coincidental to the plagio, but the physical therapist is working on > this also since her sacrum/pelvis seems to be tilted and there is > tightness in her side bending. > > - What type of specialist (doctor) do we want to be working with? We > are currently seeking an appointment with a neurosurgeon in > Sacramento. Is this the right direction to be going? It is apparently > the standard referral from our pediatrician so we are pursuing it, at > least for the moment. > > - I am feeling a great deal of regret and guilt at not acting sooner > and feeling like I've failed in some important way as Zia's mom. Any > suggestions about dealing with this would be greatly appreciated. > > I'm sure I am forgetting some other important questions, but I will > send them out in another email when I think of them. In the meantime, > I am so grateful to have connected with this community and look > forward to your responses. > > Amy > Chico, CA > pictures of Zia attached (one front view, and one side view). I think > the side view shows the flattening, though I've mostly avoided taking > side-view pictures BECAUSE of her head shape, so I have a limited > selection from which to choose. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Hi Buck, I can certainly relate to the detective work we have to go through to figure out what our real triggers are. I did the same thing and even went through an episode thinking I had some serious illness due to he constant congestion and feeling like I was sick all of the time. In hindsight of course you think - why didn't I pick up on this sooner - but after having taken a product like aspirin on all of ones life and then discovering that it IS indeed the culprit in all of this - just really seemed crazy to me. As for the desensitization and surgery. My ENT actually had my desensitization done prior to surgery (was my 2nd sinus surgery) and I can tell you that although it didn't restore my sense of smell (surgery did this) it did certainly better my quality of life than it was prior to having had the desensitization. I am now on only aspirin and aside from mild stomach irritation and a little increase in heartburn things are going well. The desensitization really does help to stop you from reacting to everything you eat, drink, touch, and look at with this disease. I still don't know all of my triggers but it's so nice to be able to go through the day without feeling like things are closing in on me and my congestion, or allergy state is getting worse. If you haven't had surgery yet, I can tell you that if you're having desensitization before a possible surgery this is the way to go. you're starting out with the two best ways to combat this disease. Depending on a cat scan the doctor should be able to tell you how full your sinuses are. Mine were pretty much completely closed except for one small area. So I had to have surgery to clear everything out in order for the medicine, and the nasal irrigation to really keep things clear. I know surgery seems like a last resort and I despise surgery - but it has soooo been worth it to finally be able to breathe and smell again. That's another thing you should start doing immediately (which I waited years and years before doing it myself) is to irrigate your nasal passages with the NediPot and saline water. You can buy it at a pharmacy or online. After having the disease for more than 7 years I just began irrigating in December 2009 after my surgery and it has been a HUGE relief to keeping things flowing out of my nose. glad you found the forum - I know it's been a huge source of emotional comfort as well as knowledge to me over the years knowing that there are other people out here living with this ailment that for so long I thought was only in my head........welcomeBianca From: asfy <asfyso@...>Subject: Re: Greetings from New Membersamters Date: Sunday, February 7, 2010, 4:39 AM Welcome Buck,Your story will certainly remind a lot of members of their own journey both to get correctly diagnosed and to explain "what is going on" to their close relatives, who often express sorry empathy, worry, incredulity, disbelief, anger, or a combination of these, before the real understanding finally sinks in. A relative of mine used to say I had chronic sinusitis only because I did not heat my home warm enough (it is already 21°C, but he may have had 27°C in mind !). It's really a good step forward that you were actually able to self-diagnose. Unfortunately, I am sure there are many AERD patients, if not a majority, who are painfully unaware of the actual cause of their airways pathology and are just waiting for some coincidence to realize it.Desense is not certain to bring back any sense of smell at all (it actually can, but return to 100% SOS is not the norm), but it will certainly help your symptoms. Check for clotting capacity and eosinophil levels regularly.By the way, the creator of this group whom you can thank for having the idea to share experiences and resources is .>> Greetings to all.> > I would like to thank all of you for creating and maintaining this message group. I have learned very much about aspirin exacerbated respiratory disease through your messages.> > I am a 56-yo male retired military officer. About 2 years ago I began to experience breathing difficulties which occasionally peaked in acute episodes of airway constriction. It took me a long time, lots of personal detective work and several red herrings before I was able to isolate the cause to aspirin and ibuprofen. (My wife, a psych nurse, insisted I was going through some kind of PTSD reaction -- goes to show that if all you have is a hammer, everything looks like a nail.) > > I am scheduled to undergo aspirin desensitization next Friday at the allergist's office. I've never had sinus surgery and hope to avoid it if the desensitization alone returns my sense of smell and improves my breathing.> > I was wondering if any of you have had any luck with desensitization without surgery?> > Thanks again for making this valuable information resource available.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Thanks for the welcome. It's indeed gratifying to communicate with folks who are not indifferent to these symptoms. I certainly took the sense of smell largely for granted before I lost it 2 years ago. At your recommendation, Bianca, I began saline irrigation this weekend and as you say, it provides a huge relief. Also started Zyflo and it has had a remarkable effect; within <48 hours my breathing has improved and sense of smell has partially and intermittently returned. I will debrief you on the outcome of the asa desensitzation procedure later this week. Buck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 Take sound hygiene precautions when irrigating : wash hands before, disinfect your irrigation device thoroughly after use with alcohol or hydrogen peroxyde or dilute bleach (in which case rinse it before use with a small amount of saline to avoid irrigating with leftover alcohol or bleach). You don't want to pour germs and viruses into your already inflamed sinuses. > > Thanks for the welcome. It's indeed gratifying to communicate with folks who are not indifferent to these symptoms. I certainly took the sense of smell largely for granted before I lost it 2 years ago. > > At your recommendation, Bianca, I began saline irrigation this weekend and as you say, it provides a huge relief. > > Also started Zyflo and it has had a remarkable effect; within <48 hours my breathing has improved and sense of smell has partially and intermittently returned. > > I will debrief you on the outcome of the asa desensitzation procedure later this week. > > Buck > Quote Link to comment Share on other sites More sharing options...
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