Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Hi all, I'm still waiting on Cole's STARBand (should be here by next Tuesday at the latest). Meanwhile, I was wondering if anyone has a success story on severe brachycephaly and STARBand? Cole will be 7 months when he starts his band, and I'm hoping for some drastic improvement in his head shape. (Even stories about it looking much better with hair, etc. would be appreciated). We are in the burg area, and are traveling to Norfolk, VA to see orthotist Harry Bright (in case anyone has dealt with him, I'd be interested in hearing feedback). Kia, Cole's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Kia: Please don't get discouraged already! There is no reason why Cole shouldn't get good improvement while in his STARband! He's only 7 mos old and will still be hitting several more growth spurts in the coming mos while in his band. I can't offer you any personal success story as my daughter had plagio., but I've been a member of this group for 1.5 yrs + already & plenty of brachy babies have had great success while in their helmet or band - trust me Please let us know when his band is in & how it goes. Best of luck....keep you chin up Debbie Abby's mom DOCGrad MI > Hi all, > > I'm still waiting on Cole's STARBand (should be here by next Tuesday > at the latest). Meanwhile, I was wondering if anyone has a success > story on severe brachycephaly and STARBand? Cole will be 7 months > when he starts his band, and I'm hoping for some drastic improvement > in his head shape. (Even stories about it looking much better with > hair, etc. would be appreciated). We are in the burg area, > and are traveling to Norfolk, VA to see orthotist Harry Bright (in > case anyone has dealt with him, I'd be interested in hearing > feedback). > > Kia, Cole's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Kia, I understand how stressful it must be waiting and wondering how it will go. How do you feel about your ortho? Did you ask him directly how well he thought the treatment would go for Cole's brachy? If he's treated other brachy babies he should have a good point of reference. Hair does help for sure and with brachy you usually don't have to deal with the facial assymetry and ear misalignment so much. (Hopefully that is the case for Cole) Best wishes! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 For those on the protocol who have seen either little progression or no progression or in some cases increased activity - I have a few suggestions We've had lull periods over the past 4 years where has either 'regressed' or 'failed to progress'. This gave me an opportunity to sit back and do a little analysis work myself. Was he reacting to something? perhaps something in a medication? was it a food item? or perhaps a seasonal change? One example that comes to mind is the iron supplement that Dr G recommends - Feosol. My son was initially taking this supplement because he's anemic. I started noticing an increase in 'aggression' whenever he had the pill (we would give it to him 3x a week). hmmm While 'connecting' with another mom, I mentioned this . She said " Feosol contains Lactose. My kids reacted to it perhaps is " . I switched him to Poly vi Sol rabbits with iron and ouila! the aggression disappeared. I queried Dr G on this. He said normally the kids don't react to the Feosol. Obviously , did. Next - we discovered has an intolerance to certain Phenols/ Salicylates. We discovered this while implementing the Feingold diet. has always loved (craved?) apples ... hmmmm yep, took apple and green peppers out and certain behaviors disappeared. Sugar - we have to watch his sugar intake. We try to keep it as low as possible. Pollen,Mold, etc - yep, those lovely East Coast environmental triggers. has behavioral moments in the spring and fall .... hmmmm. He's now on Allegra with very nice results. I found out from a mom today that Paxil might have lactose in it. hmmm bounced on Paxil .... which is why we went to celexa then zoloft. I'm also charting 's bloodtest results - I keep an eye on what's up / down. His immune system is still in flux. doris land Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Doris - sounds familiar - though Celexa has Lactose too - we get the 40mg version pounded into 5mg capsules, this minimises the lactose ie a 40mg pill is the same size as the 10 mg and the 20 mg and the pharmacist suggested use the stronger pill to compound as you would then get less lactose - seems to work . The Pharmacy tried to get the base medicine in Celexa but couldn't as it is still under patent. WE also did the same with Nizoral - it contains lactose though for Nizoral, we could order straight Ketacanazole in the correct dose in capsules. On another note, glad the dreadful drama in land is over - we cross our fingers. The news has been such a horror show lately - with events in Bali and now Moscow just stomach turning. We have our reservations to fly to CA in 2 weeks to see Dr G....just hoping all remains calm and the Iraqi's comply, re: feeling discouraged For those on the protocol who have seen either little progression or no progression or in some cases increased activity - I have a few suggestions We've had lull periods over the past 4 years where has either 'regressed' or 'failed to progress'. This gave me an opportunity to sit back and do a little analysis work myself. Was he reacting to something? perhaps something in a medication? was it a food item? or perhaps a seasonal change? One example that comes to mind is the iron supplement that Dr G recommends - Feosol. My son was initially taking this supplement because he's anemic. I started noticing an increase in 'aggression' whenever he had the pill (we would give it to him 3x a week). hmmm While 'connecting' with another mom, I mentioned this . She said " Feosol contains Lactose. My kids reacted to it perhaps is " . I switched him to Poly vi Sol rabbits with iron and ouila! the aggression disappeared. I queried Dr G on this. He said normally the kids don't react to the Feosol. Obviously , did. Next - we discovered has an intolerance to certain Phenols/ Salicylates. We discovered this while implementing the Feingold diet. has always loved (craved?) apples ... hmmmm yep, took apple and green peppers out and certain behaviors disappeared. Sugar - we have to watch his sugar intake. We try to keep it as low as possible. Pollen,Mold, etc - yep, those lovely East Coast environmental triggers. has behavioral moments in the spring and fall .... hmmmm. He's now on Allegra with very nice results. I found out from a mom today that Paxil might have lactose in it. hmmm bounced on Paxil .... which is why we went to celexa then zoloft. I'm also charting 's bloodtest results - I keep an eye on what's up / down. His immune system is still in flux. doris land Responsibility for the content of this message lies strictly with the original author, and is not necessarily endorsed by or the opinion of the Research Institute. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Some things that you might want to think about. Healing has to go on through out the body since this is a systemic disease. You may not be seeing any progress but your child's thyroid may be getting better! Secondly children do things in spurts not in straight lines. So you may see a lot of improvement and then nothing for a while. I know it is very hard to do it but you have to try and step back and look at the big picture once in a while to see how far you've come. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 > > Last week I had my annual MRI and was having problems in my left eye. > MRI showed I had a new lesion On my optic nerve.I have been on LDN > since last year when I was diagnosed and am feeling a little bit down > that I have a new lesion....Does it mean this is not working for > me???????? > ========== Was the lesion active? If not don't sweat it. Also, what dosage of LDN are you taking and what pharmacy do you get your LDN filled at. What is your filler? Quote Link to comment Share on other sites More sharing options...
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