tag:blogger.com,1999:blog-60990343530848285122024-03-13T06:26:15.155-04:00More Than Words1 in 150 kids have an Autism Spectrum Disorder (ASD) If don't know someone with Autism, YOU WILL - It is time for change!Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-6099034353084828512.post-15554305562010514422009-09-15T15:52:00.002-04:002009-09-15T16:06:37.644-04:00More on mHBOTWe ended up taking a 10 day break because of the ear and the new tubes. We resumed and were able to get in another 66 1/2 hours to make a total of 90. (Our goal!) <br /><br />He is definitely stronger! He is now able to pull himself to a standing position without any help, prior to this he would crawl over to you <em>or something</em> to pull up on and he can now stand up from the middle of the room!! He has done this in front of us <strong>at least</strong> 20 times now - but doesn't fully realize that he can do it every time yet. It is very exciting!! He is also getting off of furniture much easier, walking much better, faster (almost running!) <br /><br />Originally, the chamber was to be picked up on Labor Day weekend, but because he has done so well with it the office has given us another couple weeks. This has allowed us to take another 10 day break (that ends today) and get in another 30 hours before the chamber is returned so if all goes well we will have a total of 120 hours in by the 25th. After the 30 hours, we will take a month long break to see what progress is made. The oxygen continues to heal during the break periods and that is when a lot of people see most of their gains. <br /><br />Hopefully October will bring some good things!Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com1tag:blogger.com,1999:blog-6099034353084828512.post-89108877018599033762009-08-07T15:43:00.005-04:002009-08-07T17:16:27.933-04:00If it weren't for bad luck...At least that's the way it feels...<br /><br />We got a great start with the mHBOT and were quickly working our way up in hours, until Monday, when I noticed a discharge in Dylan's right ear that looked like dried up blood... so I frantically posted questions on the HBOT message boards and went crazy trying to get an appointment with an ENT - <em>almost impossible to do with a days notice</em>, even if you are willing to drive and see any ENT possible - we ended up with an appointment for ours for Friday and since I couldn't wait I finally was able to find someone to see him Tuesday, I had to drive over half an hour but it was worth it to know if the eardrum was ruptured and to figure out what was going on. <br /><br />It turned out that he had an infection and what I saw was a brown wax and pus, but not blood. Thank GOD! The doctor could not see if the tube was still in and didn't want to suction the ear since Dylan was already upset at him just taking a peek. The left ear had wax that he was able to remove and it was clear BUT the tube was loose and just resting in the canal... Antiobiotic eardrops and Amoxicillan were prescribed.<br /><br />Dylan never presented with a fever or showed any signs of ear pain so we had no idea that this was going on AND to top it off this was his first Fullblown Ear Infection <strong>ever</strong>, figures - what better timing? Right in the midst of our HBOT rental that costs $1600 a month... <br /><br />Luckily we kept our appointment for Friday with our ENT (today) and Dylan's ear no longer shows signs of infection, but does still have wax blocking the view of the tube (or no tube), his left ear was checked again and is fine, but the hole is already completely closed so a new set of tubes is definitely needed. We scheduled and he will be seen next Thursday (Just Great! Another week wasted!) for the new tubes. He should be able to resume HBOT treatment next Saturday as long as all goes well - so please pray that all will go well. He got these tubes last December and they did not even last 3/4 of a year - CRAZY!! <br /><br />The good part about the new tubes is that Dylan will start with ears that are clear of wax and the tubes will help him to pressurize so we should not have any problems in the chamber. If only we had known to check out his ears PRIOR to the rental! What a lesson this has been. <br /><br />With the 23 1/2 hours that we did get in we have noticed more babbling and some attempts at new sounds, he initiated "Ring Around the Rosy" and fell appropriately without being tugged or prompted, and then afterwards he said: "Ring" VERY EXCITING!!<br />Also, his core strength is better, meaning his stomach area, for instance when assisting him by holding his hands or his waist to get up the stairs, before, he was very wobbly and you could feel the lack of strength, now he is sturdier and you can feel it. We are very excited with what we are seeing thus far and can not wait to continue. I truly believe that HBOT will be great for him. <em>If only his ears will cooperate. :)</em>Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-66450785848037691062009-07-23T16:48:00.002-04:002009-07-23T16:59:48.431-04:00Believe it or Not...We are finally going to start HBOT!! We have been talking about it for so long now and trying to figure out what the best way to go would be and we finally made a decision. First, the option of doing it at the Wound Center was ruled out - they couldn't do it because it is considered Off-Label use. That left renting or buying and we decided to rent for the month to see if he is a responder and go from there. It was a tough decision because the $1600 used to rent it for the month is a good amount towards the purchase if it turns out that we should buy one, but we couldn't wait any longer to find out if this therapy is right for him.<br /><br />Dylan and I took two test dives this week. On Tuesday we went in the chamber and pressurized, stayed in for about 10-15 minutes and then depressurized. He did great! Wednesday we stayed in for an hour and he did great again. He likes it in there and his ears (knock on wood) seemed to be fine. I chewed gum and popped mine A LOT! but I can handle it if it means that my baby boy can get better.<br /><br />We receive the chamber Sunday evening and plan on doing our first session, then we will get up early everyday and do an hour-and-a-half in the morning and again before bed for a total of 3 hours per day, with a goal of 90-100 hours during the rental period, which we are lucky enough to have for an additional 2 weeks, so we will have the chamber for a total of 6 weeks. <br /><br />LDN and Chelation are still going fine. Nothing good or bad to report. I hope to have some good things to report about HBOT soon, everybody that prays - PRAY! Everybody else - send good thoughts his way.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-18352996508997803702009-06-11T14:31:00.004-04:002009-06-11T15:13:03.341-04:00Chiropractic and ChelationWe started seeing a Pediatric Chiropractor shortly after my last post, Dylan just had his 20th adjustment today. He has been going three times a week to correct subluxations. The good news is that he likes going and doesn't mind getting the adjustments, he initially cried when his neck needed adjusting but he has gotten over that and simply seems to enjoy it. The bad news is that we are not seeing any progress from the adjustments at all. In fact, his balance is actually worse right now. Last week after his 17th adjustment he could only take 2 steps before falling and he was dragging his left leg, not bending his knee when he walked... Scary!! So again we are left unsure and have to decide whether or not to continue from here or to give it a break and see how he does. <em>(Leaning toward giving it a break since insurance only covered 12 visits and we can't go on wasting $ that could be spent on HBOT if it isn't going to be beneficial)</em> Sad though! I really felt that this was going to help his balance.<br /><br />He is continuing to chelate with the EDTA suppositories, twice a week without any issues. Nothing to report good or bad at this point. <br /><br />We have also started transdermal LDN (Low Dose Naltrexone) to boost his immune system. We started with 1/5 of the normal dose and worked our way up to the full 3mg. It is a cream that you can put on the feet and is best when used between 9PM and midnight, with 11PM being the optimal time. We had one night of disturbed sleep (very common) and have noticed some aggression but other than that he seems to be tolerating it fine. It has now been 2 weeks - the first 12 days were spent working up to the 3mg and the past two were full dose so it is still pretty early. LDN can help with socialization and speech as it is healing the immune system. Some people note that they lose several food allergies and intolerances. Hopefully, this will be something that Dylan responds to. So far as one of our DAN's puts it "He is a hard nut to crack". <br /><br />HBOT is still in the future. Hopefully the near future! We are waiting for finalized pricing for 40 hours in a hard chamber. Mainly because the hard chamber is supposed to help with Muscle Tone and Mito issues faster than the mild chambers. The mild chambers do help with these issues as well, it just takes longer to get the same results. If he is a responder we will have to figure out where to go from there as more sessions will be necessary. If we can't do the hard chamber we will get on the list to do the mild chamber and plan to try doing 90 hours in the month with a month break to see what results we get. Again, if he is a responder more sessions will be beneficial and we will have to decide about renting vs. buying.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com1tag:blogger.com,1999:blog-6099034353084828512.post-33142102798895265832009-04-24T14:59:00.000-04:002009-04-24T15:44:07.973-04:00Dylan turned Four! : (Dylan turned four on April 8<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span>. I can't believe it! Where did all the time go??<br /><br />We finished up our <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Floortime</span> class. It was informative and I'm glad we were both able to go. Dylan's new OT had a couple weeks off for Easter so today we went for his second session with her, so far it is going okay. We are doing Sensory Brushing and Compression a few times a day, sometimes he enjoys it, other times he is just not into it.<br /><br />He had his first Dental Cleaning and Exam yesterday and it started off better than we imagined <em>but</em> when she got to the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">fluoride</span> part, she had to suction him and he <strong>flipped out!</strong> That was it for him. He started gagging and choking up mucous, he turned so red and gagged so hard that he broke blood vessels around his eye area. <em>Poor little guy!!</em> He does not like his mouth messed with, but with two cleft surgeries, tonsils and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">adenoids</span> removed - <em>who can blame him?!</em> The good news is that I am keeping his teeth clean and he has no cavities. He does however have an extra tooth that came in behind another, this happened recently and was actually the reason we took him in. We have been dreading the dentist with him, knowing how he would respond... The tooth will eventually need to be pulled but that of course will just add to his oral issues, so hopefully it can wait until he can better tolerate it.<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_4">Chelation</span>- I decided to purchase <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Detoxamin</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_6">EDTA</span> suppositories because they are <strong>so much</strong> cheaper than the compounding pharmacy and seem to be the same thing. They are a higher <span class="blsp-spelling-error" id="SPELLING_ERROR_7">strength</span>, but the low dose he started on was to see if he tolerated them well and he did fine with them. Also, you don't need an RX for these so that is very nice!! His schedule started at one every 14 days but we are now moving to twice a week. The normal dosing is every other day, but since he is so small (32lbs) we are going to start with less and see what happens.<br /><br />The homeopathic visit went fine. She muscle tested all of his supplements and made 2 bags, the ones he didn't need right now and the ones he still did, about half of them were cut out. We decided to try it for awhile to see how it went, it has been a little over 3 weeks and he doesn't seem to be lacking anything. She also added in Vaccination Detox, <span class="blsp-spelling-error" id="SPELLING_ERROR_8">ALJ</span> (a seasonal allergy remedy) and Lymphatic Drainage. He seems to do fine with them. <em>No great gains, but no side effects. </em>She treated him for Wheat, Dairy and Dog Saliva with the laser method. He had to avoid dairy for 2 weeks after and wheat and dog saliva for 3. His 3 weeks were up yesterday. We haven't exposed him to any of it yet though. We'll see what happens!<br /><br />I tried to schedule his chiropractic appointment today and found that the office is closed on Fridays so I will have to call on Monday and hopefully he can start that next week.<br /><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_9">LDN</span> is still on our list of what is coming up and of course <span class="blsp-spelling-error" id="SPELLING_ERROR_10">HBOT</span> is definitely still in our plans, somehow we <em><strong>will</strong> </em>do it, but in the meantime we are hoping that the chiropractic visits will do some good.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-90879714109483684012009-03-31T10:08:00.000-04:002009-03-31T10:31:06.853-04:00Floortime WorkshopLast week my mom and me took Dylan to Barrie Galvin's Center for an evaluation to start therapy. They use the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Floortime</span> approach for OT and Speech. Keith and I decided to sign up for the 3 day workshop. We went to our first session last Wednesday evening and have our second tomorrow. I have the book <em>Engaging Autism</em> by Stanley Greenspan so I had the basic idea of what <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Floortime</span> was, which is basically communicating with your child through their natural interests and learning to build on that. It is a good concept and seemingly easy, in fact we found that we do a lot of it naturally in our house so we have a good foundation, but building on activities and keeping the child's interest while doing so can be surprisingly difficult. You have to be very <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">persistent</span> and very creative. All in all I do like this approach because it just makes sense that if you work with someone's interests, they will be responsive.<br /><br />We will do our 2nd round of EDTA Chelation tonight and then Dylan goes for bloodwork tomorrow. (Poor guy) HATE HATE HATE the bloodwork. I seriously have to talk to his doctor about limiting it to 3 times a year. It is just too traumatic for him (and us) and the lab is never happy to have to use our special kits. I wish that DAN! doctors could/would have their own labs, it would make a world of difference.<br /><br />We met some nice people in the Workshop and are seriously considering trying a Chiropractor for Dylan. We have heard so many good things that it is worth a try. One of the girls said her son overcame his low muscle tone issues through it and that would be huge for Dylan. I also have an appt at Natures Sunshine on Thursday for him with a homeopathic doctor. She does some type of lasering for allergy removal. Along with muscle testing and other traditional remedies. I am very interested in the DPT nosode so I hope that she is familiar with it. Friday it is back to Barrie Galvin's for OT. So we are pretty busy right now.<br /><br />We are still trying to figure out the HBOT issue. Basically the financial part of things, but we know we <strong>HAVE TO</strong> do it. His muscle tone in my opinion is his biggest weakness, HBOT is proven to help with that and can completely reverse it, which could totally change his life.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-83241479711143301672009-03-20T18:18:00.000-04:002009-03-20T18:29:12.581-04:00Chelation - Finally!We finally got to start chelating on Tuesday. They are EDTA Suppositories, so just before bed I gave one to him. He handled it fine and so far, so good. Nothing bad to report. The schedule we are starting with is One (1) 125mg suppository every 14 days, I hope that if he does well we will be moving that up to <strong>at least</strong> 1 a week. Most kids are doing a higher dose and do them every other day, or twice a week. Not sure why he has started Dylan out so slowly but I guess it's best to be cautious.<br /><br />We quit using Enhansa because when I tried to move it up to the higher dose, his eyes became very itchy and puffy. When we removed it, they were better. I might try to give it one more time to make sure it was that, but I am guessing it was. Normally, I would be upset about this, but from what I have been reading about LDN (Low Dose Naltrexone) I am kind of anxious to give it a try, so that will be our next new thing.<br /><br />I am also looking into vaccine clearing with nosodes. Especially for the DPT vaccine as I suspect it played a role in things.<br /><br />Other than that we are still planning on doing HBOT but need to come up with a plan financially to do it.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com1tag:blogger.com,1999:blog-6099034353084828512.post-10063200248538162962009-03-06T14:02:00.001-05:002009-03-06T14:29:59.184-05:00Test Results and Other Stuff...We had a phone appointment to go over the test results, and unfortunately his white blood cell count is down again. So his immune system is still weak even with all of our efforts to repair it. He was also on the lower end of normal in calcium. (Mainly because I stopped giving him the full dose, I was giving more like a quarter of the dose and sometimes none, to make sure he wasn't getting too much and that he had enough vitamin K2 to properly absorb it) So we have to wait yet AGAIN to start <span class="blsp-spelling-error" id="SPELLING_ERROR_0">chelation</span>. The doc wants him to do 3 full weeks on double the calcium we have been giving (I just moved it back to the full daily dose) and then start. This was disappointing to us because holding up <span class="blsp-spelling-error" id="SPELLING_ERROR_1">chelation</span>, holds up <span class="blsp-spelling-error" id="SPELLING_ERROR_2">HBOT</span> as you have to start one, give it some time to see if you are getting results before starting something new.<br /><br />We are still using <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Enhansa</span>, but it is pretty potent, so when we try to move up the dosage to get to the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">recommended</span> daily dose he becomes lethargic and a bit grouchy. We are very slowly working our way to the full dosage and hope that something good will come from it as it has the potential to do so much. The doctor mentioned that if we do not start seeing results from <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Enhansa</span> that the next step would be <span class="blsp-spelling-error" id="SPELLING_ERROR_6">LDN</span> (Low-dose <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Naltrexone</span>) which is proving to be great for boosting the immune system. Exactly what our little guy needs.<br /><br />Because I was upset at waiting on <span class="blsp-spelling-error" id="SPELLING_ERROR_8">chelation</span> I decided to do another treatment that I have been considering - The vitamin A protocol. The protocol is only 2 days so that is easy enough - but it is a high dose so kind of scary. It is also something that you may not see results with for a couple of months, so another waiting game. Basically you give 400,000 <span class="blsp-spelling-error" id="SPELLING_ERROR_9">iu's</span> of vitamin A for 2 days in a row. It went well, he initially had an increase in babbling and was in a generally happy mood with more energy than usual. He had a little rash on his face on day 3 (day after protocol) but today is day 4 and it is already clearing. Nothing else to report on this yet. We did it for his visual <span class="blsp-spelling-error" id="SPELLING_ERROR_10">stimming</span>. Visual <span class="blsp-spelling-error" id="SPELLING_ERROR_11">stims</span> can be a sign of measles in the gut, since doing a scope is the way to test this, most parents just do the protocol without the testing. Some kids have very dramatic results.<br /><br />I forgot to mention in my last update that in December Dylan had to have another set of ear tubes, so he was put under again. Not good for a little guy that is still struggling to recover from all of his previous surgeries.<br /><br />We are still looking for good therapists and so far I have had no luck. The speech girl that comes to your house is booked, so he's on a list. Although we liked her, and she does take the scholarship, she failed to mention until our intake <span class="blsp-spelling-error" id="SPELLING_ERROR_12">appt</span>. that she expects payment and then signs the check she receives over to us when the state pays her, which is quarterly.... If we had that in our budget we wouldn't need the scholarship! Ugh!! Another issue to work through, but we will somehow figure it all out.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-78206023929961792402009-01-23T17:42:00.000-05:002009-01-23T18:17:35.735-05:00New Year, Our PlansIt has been awhile since I've updated. Somehow time is getting harder to find. A lot has gone on since the last update.<br /><br />The Autism Scholarship - We found out what we needed to do, and we did it. <em>Most of it that is.</em> First we got the diagnosis of Dylan being on the spectrum. Will not go into the details of that just yet, because it was/is a mess. Second we met with the school district to revise his <span class="blsp-spelling-error" id="SPELLING_ERROR_0">IEP</span> to include the diagnosis. Then we filled out the forms and thought we could send them in to apply, but it turns out that you must first pick your providers - so that is where we currently are in the process.<br /><br />The <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Autistique</span> Cream has been going well. We did get an increase in babbling and Dylan has started to say some new things, like "get", "get you", "I did" and "<span class="blsp-spelling-error" id="SPELLING_ERROR_2">keekee</span>" (for kitty kitty) he continues to say: yea, <span class="blsp-spelling-error" id="SPELLING_ERROR_3">dada</span>, daddy, <span class="blsp-spelling-error" id="SPELLING_ERROR_4">hun</span>, <span class="blsp-spelling-error" id="SPELLING_ERROR_5">ana</span> (for the cat Shana.) Get and Get You come from playing hide and seek or chase which are two of his favorite things to do. He can also catch a ball now and will sometimes play catch, but typically likes to tease, by catching and running in the opposite direction with the ball.<br /><br />The <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Glutathione</span> Patches went fine, but we are still unsure of whether or not we feel they work. We are out and are considering ordering again, but are not in a hurry to do so. He did have a low grade fever upon starting them and then an ear discharge the next time, he also was sleepier than usual - this can all be indicative that they are actually working - but since we were also using <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Argentyn</span> 23 (Colloidal Silver) to kill bacteria, yeast and viruses, it is hard to say which was the culprit. The timing did seem to coincide with the patches, so we are not ruling them out for future use.<br /><br />To start the New Year out on the right foot we decided that <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Chelation</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_9">HBOT</span> are going to be the top priorities for the year. Dylan had an appointment on January 20<span class="blsp-spelling-error" id="SPELLING_ERROR_10">th</span> and will be doing <span class="blsp-spelling-error" id="SPELLING_ERROR_11">bloodwork</span> to make sure that he is ready to <span class="blsp-spelling-error" id="SPELLING_ERROR_12">chelate</span>. We are going to start with <span class="blsp-spelling-error" id="SPELLING_ERROR_13">EDTA</span> suppositories, 1 every 14 days. We are also going to start using <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Enhansa</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_15">Curcumin</span>) from Lee <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Silsby</span>, this is known to boost <span class="blsp-spelling-error" id="SPELLING_ERROR_17">Glutathione</span> (the reason we are waiting on the patches) and to fight viruses, yeast and bacteria. His DAN! thinks the <span class="blsp-spelling-error" id="SPELLING_ERROR_18">Autistique</span> Cream is fine to continue and said that depending on the test results we may be able to discontinue some of his other supplements. Which will be nice!<br /><br />Our biggest issue at this point is where and how to go about HBOT. It is the most expensive treatment we will be doing, at least when you consider it is done in one lump sum.<br /><br />Our options are as follows:<br /><ul><li>DAN! Dr. #1 - In office or Rent at home - Soft Chamber - over $2000 a month</li><li>DAN! Dr. #2 - In office or Rent at home - Soft Chamber - around $1800 a month</li><li> Cleveland Clinic - Hard Chamber - $ waiting for pricing</li><li>Buy a unit - Soft Chamber - between $8000 - $18,000</li><li>Possibly leasing a unit - Soft Chamber - still checking into</li></ul><p>We have pretty much eliminated the first DAN! as it is more expensive than DAN! #2, The Clinic has yet to get back to us to let us know what our per session cost would be, and buying a unit is something that we need to fully look into to see about resale value, and other options. Leasing is also an option that we will check into. This is not going to be an easy choice because as all therapies go, you just don't know what response you are going to get and we have to go with our gut on the decision. Typically a minimum of 40 sessions is required to get progress - some families are doing 100's of dives and still seeing results - in those cases owning is the way to go. But by the time you know if you are a responder or not, you could have already sunk thousands into renting and then you don't have the $ to buy. So this is our biggie right now and we have to think fast and hope we make the right choice.</p><p>I am sure I'm leaving things out, so I will try to update again SOON and to keep my updates <em>updated</em>. I did get Jenny's book and I really enjoyed it. Very easy to read and informative. </p>Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com1tag:blogger.com,1999:blog-6099034353084828512.post-17260754786899011792008-09-25T14:24:00.000-04:002009-01-23T18:18:37.192-05:00Need for a Diagnosis?While researching some therapy options I learned that there is an Ohio Autism <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">Scholarship</span> (or something like that) of $20,000 a year but you have to have an "official" diagnosis to apply. This doesn't mean we get a check for this amount of money, or that it can be used for biomedical treatment, which at this time it can NOT, but it does mean that he can get specialized therapy that is working for other children like him, or it can be used for the school tuition when we are ready.<br /><br />Up until now getting that official diagnosis didn't mean much to us, because really is it even Autism that all of these children have today? I mean I know that is the label that they put on all of these immune, and digestive issues that are tormenting these kids and causing their delays, <span class="blsp-spelling-error" id="SPELLING_ERROR_1">stims</span>, social and behavioral issues, but since they can get better, recovered completely even - is it Autism? <em>I don't know!</em> But I will take the label if it means that he can get therapy that will actually benefit him (as opposed to the traditional Speech and PT that he got nowhere with.)<br /><br />There is a place for Speech that likes to treat kids in their own homes and that is exactly what we are looking for. So now in addition to everything else we have going on, we are going to seek getting this official diagnosis, that could range pretty much anywhere on the Autism Spectrum. I would probably call him <span class="blsp-spelling-error" id="SPELLING_ERROR_2">PDD</span>-NOS myself (pervasive developmental disorder - not otherwise specified) but whatever they want to call it - fine - if it means that we can get him the help he needs to get caught up. Which I still fully believe he <strong>can</strong> and <strong>will</strong> do.<br /><br />It has been 2 weeks now of the OLE and 3 of the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">GSE</span>, we haven't really noticed too much but that doesn't mean that it isn't doing anything so we will continue. <em>I am still taking both myself.</em> I did order the <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Autistique</span> Cream 2.0 but received 3.0 which is more expensive and has more things in it, I decided instead of going through the hassle of sending it back and getting what we ordered he could try it - it has only been 3 days so we don't notice anything yet. It is nice that he isn't taking so many things orally now. I am really anxious to start the <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Glutathione</span> patches but I am going to wait until he has been doing the <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Autistique</span> for at least 1 full week to add them. I may wait 2 because for this first week we are only applying before bed, you work up to 2 times daily, first thing in the AM, last thing in the PM...<br /><br />The Cleveland Clinic submitted our <span class="blsp-spelling-error" id="SPELLING_ERROR_7">HBOT</span> request to our insurance finally so we will know what they say soon. We have a phone <span class="blsp-spelling-error" id="SPELLING_ERROR_8">appt</span> with Dr. Cheryl to go over test results and talk about <span class="blsp-spelling-error" id="SPELLING_ERROR_9">Chelation</span> next Thursday, October 2<span class="blsp-spelling-error" id="SPELLING_ERROR_10">nd</span>. I am also going to talk to her about the diagnosis so we can apply for the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_11">scholarship</span>. Keep your fingers crossed!<br /><br />As usual there is so much to decide and figure out - but we are moving along with high hopes that one of these things or a combination of them will be what he needs to overcome and heal. Speaking of healing - Jenny McCarthy's new book came out yesterday, <strong><em>Mother Warriors</em></strong> I <span class="blsp-spelling-error" id="SPELLING_ERROR_12">defintely</span> have to get it!Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-60451674447999543532008-09-11T18:21:00.000-04:002008-09-11T18:31:29.895-04:00Started OLE, Lifewave Patches and other stuff...Dylan and I started our OLE this morning (Olive Leaf Extract) so far, so good! Aside from the fact that he won't nap today. He hasn't been sleeping too well in general lately though - I think the B6 P5P is the culprit. The problem is that we pre-make 18 supplement cups at once for his lunch time smoothie and there is no way to remove some of the B6 - when this stack is out, we are going down to half a tablet!<br /><br />In doing researh and hearing about what is working for others, I decided to order the Lifewave Glutathione Patches because so many people on the MB12/Valtrex board seem to be having great results with them. We previously used the cream and did not care for that, but hopefully we will see something good from them. I like the fact that they are non-invasive and seem to be great for just about anyone. I decided to become a distributor, mainly to get better pricing in case they work out, I don't plan on going crazy tryiing to sell these things. I will post our progress with them and if they are amazing - they will sell themselves. You can check out the link at the bottom of the blog to see what else Lifewave has to offer.<br /><br />I am also interested in ordering Autistique, a cream that contains some of the supps that Dylan takes orally right now, it contains the MB12 as well - and I know he would LOVE to get rid of the shots. I am going to look into it a bit more before deciding but it seems like a good way to go, because it will bypass his digestive system and get right into the bloodstream. I hate that he has to take so much everyday. I will update on this when we make our decision (basically the hard part is that they offer 3 types of the cream, so you have to decide what is the most important one for your child.)<br /><br />Anyway, I am pretty excited that we are finally trying the OLE - the GSE has been going fine for both of us. No bad side effects! Except he is peeing A LOT more! But at least he is getting everything out. :)Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-76583858268043098252008-09-05T21:43:00.000-04:002008-09-05T21:57:19.265-04:00Started GSEDylan and I both started our GSE (Grapefruit Seed Extract) yesterday, Sept. 4th.<br /><br />It is a liquid concentrate from NutriBiotic that helps combat yeast. It is also good for many other things. Like fighting colds, etc. It can be used to clean ears, as a household cleaner or to clean and sanitize water and fruits and veggies.<br /><br />It is VERY bitter! but Dylan is a trooper and is used to taking supps by now. We are both taking it 3 times a day. I started him with 1 drop with each meal and I am taking 3 drops each time. With the second drop yesterday he had some really big mucousy sneezes - this is the product in action, cleaning out the sinuses. My mom used it today to see what it was like and her nose started running - I did some research and it is normal - it can work that fast!<br /><br />Within the next week or so if all is going well we add the OLE (Olive Leaf Extract) for bacteria and viral issues. This one can cause die-off symptoms of rashes and fevers, so I decided to try the GSE first since it is the milder <em>symptom-wise</em> of the two.<br /><br />I believe both are highly phenolic (not sure if Dylan has phenol issues or not) but I am going to purchase No Fenol, an Enzyme from Houston Enzymes just in case we run into problems.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-33518958810975542732008-08-29T14:38:00.000-04:002008-08-29T14:56:41.527-04:00OAT Results and Other Stuff...The OAT results finally came in a few days after our appointment. His bad bacteria is still extremely high, even with 3 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Culturelle</span> every night for 4 months. There were also some other things that need addressing. The recommendations for these things are B6, which we have found that the P5P form is the most effective, and Vitamin C - he will be starting an <span class="blsp-spelling-error" id="SPELLING_ERROR_1">Advanc</span>-C vitamin soon.<br /><br />His Amino Acid profile looked good, so we will have to see if we can stop supplementing those for now.<br /><br />He did have some Yeast still so we plan on starting an OLE (Olive Leaf Extract) and <span class="blsp-spelling-error" id="SPELLING_ERROR_2">GSE</span> (<span class="blsp-spelling-error" id="SPELLING_ERROR_3">Grapeseed</span> Extract) protocol, OLE helps fight viruses and bacteria and <span class="blsp-spelling-error" id="SPELLING_ERROR_4">GSE</span> helps with yeast. I still have some research to do on dosing and timing. I plan on doing this protocol with him to see how it makes me feel.<br /><br />We got an RX for <span class="blsp-spelling-error" id="SPELLING_ERROR_5">HBOT</span> to see if we can do it at the Wound Center <span class="blsp-spelling-corrected" id="SPELLING_ERROR_6">affiliated</span> with the Cleveland Clinic - right now we are waiting for our Pediatrician to send over records confirming his <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Hypotonia</span> and Chronic Dermatitis. Most likely Medical Mutual will shoot this down and then our next step is to see what the financial department comes up with per session. Once we have this information we will be able to decide if we will rent the unit in our home as previously planned or if we will be able to use the Hard Chamber at the clinic. There are pluses and minuses to both so whatever way is fine with us. We HOPE to start this in October - it keeps getting moved around and we do feel that Dylan will be a responder because it should help with his muscle tone issues which are still a huge factor in his overall development.<br /><br />There is still so much to do and it is about CONSTANT research - and a strong belief that your child CAN and WILL get better. I have heard enough success stories to keep me going and there is nothing I wouldn't do to give my little guy the best chance I can for his future. He is a trooper and through it all he is still typically very happy and content.<br /><br />Another positive thing is that on July 9th, Dylan went to see his plastic surgeon to see if he required another cleft surgery and there is a possibility that he will NOT. It did close almost all the way, with just a small line remaining open. At this point I believe the only reason to do the surgery would be IF he was nasal when he spoke, but since he isn't really talking, it is hard to tell. At least we know that if he does need another surgery it is only going to be a very small fix this time and recovery should be nothing like it was with the first two. We go back in November for another evaluation.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-34855353098132386162008-08-29T14:17:00.000-04:002008-08-29T14:38:50.153-04:00Allergy Treatments 12-14Dylan cleared his 11th treatment and had his 12th treatment on June 24th for Heavy Metals, Viruses (MMR, Hep B, Lead & Antimony) He missed his July 3rd appointment due to a thunderstorm and had to go in on July 18th instead. He cleared the 12th treatment and was finally able to to do Outdoor Environmental.<br /><br />We also started a homeopathic treatment for Post Traumatic Stress.<br /><br />We got the test kit for an OAT (organic acid test) which tests urine for yeast, bacteria, amino acids and other minerals.<br /><br />He also got an RX for bloodwork to see where his blood count is at and if he's ready for chelation.<br /><br />On August 15th he went in to go over bloodwork (OAT results were not in) He cleared the Outdoor Environmental and was treated for Radiation (possibly sun allergy) and for The Miles Family dog Natasha - since he got all puffy eyed and sneezy the weekend prior to this appt while at the girls birthday party.<br /><br />We got some good news regarding his White Blood Cell count - it more than doubled since our test in March (we started seeing Dr. Cheryl in April) so the allergy treatments have definitely been helping to heal his immune system. His red blood cell count was 3.87 (with 3.9 being the low end of normal) so we are almost there with that as well. She just recommends Apricots and Spinach to bring it up.<br /><br />He started Milk Thistle to provide liver support as a prep for chelation, which we intend to start in September if further testing shows that he is ready.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-68265847466738389042008-06-17T17:09:00.000-04:002008-06-17T17:14:30.001-04:0011th Allergy TreatmentDylan had his 11th treatment today! (He cleared the Indoor Environmental, including the dust at our house) Today he was treated for Food Additives/Preservatives, Food Coloring/Dyes and Nuts<br /><br />He was asleep when we got there so she was able to do a pretty good Cranial Treatment! He actually ended up sleeping through the entire visit. He woke up when I put him back in the car. He does enjoy his treatments, but not so much the cranial so this was a good thing.<br /><br />He will have at least 2 more Allergy Elimination Treatments, One for Outdoor Environmental (A biggy) and another for Viruses and Heavy Metals. <br /><br />It is so hard to believe that we are almost done with them. We are hoping to see a big difference in him after the Outdoor Allergies are treated. It seems like the food sensitivities have definitely gotten better.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com2tag:blogger.com,1999:blog-6099034353084828512.post-82796365637588417842008-06-12T21:31:00.000-04:002008-06-12T21:47:31.061-04:00Allergy Treatments #9 and 10Last Friday (June 6th) Dylan went in to see if Sugar, Honey and Minerals cleared - they did! He was treated for Vegetables (most if any were not an issue) and Oils (all kinds, peanut oil, vegetable oil, sunflower oil...)<br /><br />Once again everything cleared! So today he was treated for Indoor Environmental Allergies (including a bag of dirt, hair, dust from our vacuum cleaner) and I brought in Johnsons Soothing Naturals baby wash because he was sensitive to that, so she treated for that too.<br /><br />She was able to do some Cranial work on him today but he wouldn't let her finish. We are thinking that it is because of the trauma of all of his surgeries. If he doesn't start to cooperate a little better she may do a homeopathic treatment for post-traumatic stress. I am thinking we may end up needing that - but unfortunately, he most likely has one more surgery this summer so I don't know if it is worth it to start before then or not. ???? Our poor little guy needs to catch a break! We are still not happy with the fact that a cleft they told us may not even require surgery, and would most likely only require <strong>one</strong> if it did, has turned into <strong>three</strong> - <em>with one of the supposed best hospitals in the world...</em> But that is another story!Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-25472831849634457372008-05-31T13:34:00.001-04:002008-05-31T13:44:16.347-04:008th Allergy TreatmentWe went in yesterday to see if Dylan cleared Dairy & Chocolates - he did!! He is doing great so far, moving right along. She decided to treat him for Sugars, Honey & Minerals - he was sensitive to both Zinc and Magnesium.<br /><br />She also did the first Osteopathic Exam/Treatment she was able to do his feet up to his neck but he wasn't comfortable enough to let her do his head yet. Hopefully, soon! She believes he will start to have better balance with each treatment.<br /><br /><em>Some progress: This week Dylan climbed up on our storage ottoman in front of the living room window, used the window to brace himself and stood up - Great (and scary) progress! </em>Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-24093457838006572882008-05-27T11:19:00.000-04:002008-05-27T11:29:05.816-04:007th Allergy TreatmentDylan cleared Fruits and Fruit Juices so he was treated for Dairy, Casein, Lactose, Chocolate... he had a strong reaction to chocolate! Poor boy!<br /><br />He enjoyed the appointment again and things seem to be going well. This week we may treat for Environmental (Outdoor Allergies) he will be treated for indoor allergies separately.<br /><br />I borrowed a book from the office - Live Free from Asthma and Allergies, it is about BioSET which is part of the technique that Dylan's doctor uses to treat his allergies. We are thinking of buying the acupressure tool so we can learn to clear some things at home.<br /><br />Other than that not much is new. Hope everyone had a great Memorial Day weekend.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-48707530341961712422008-05-16T22:27:00.001-04:002008-05-19T19:18:57.277-04:006th Allergy TreatmentBoy am I out of it! Just as we were ready to walk out the door for Dylan's appointment I double checked the time and we were late<em> by a whole day! </em>I can't believe I forgot it was on Thursday - they have mostly been on Fridays so far and I knew we had a few more Fridays scheduled... So even when Monica emailed me yesterday to see how his appointment went <em>(she remembered)</em> I said it wasn't until tomorrow...<br /><br />So I called and they were <strong>very</strong> nice about it and fit him in for a later appointment this afternoon. <em>Whew! That was close!</em> He cleared Grains!! So today he was treated for Fruits and Fruit Juices. She was tempted to treat for Environmental because he has really been having sinus issues, but you have to be in air conditioning following the treatment and we would probably have to avoid pets too so coming home wouldn't be an option until we passed our 3 hour mark.<br /><br />Depending on how he does with the remainder of the treatments we are possibly 1/2 way there! There are typically 12 -15 and we are at #6 already! So far things seem to be working very well.<br /><br />Go CAVS!Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-27449440638490544622008-05-10T20:17:00.000-04:002008-05-10T20:34:33.948-04:005th Allergy TreatmentWe went in yesterday for Dylan's fifth allergy treatment, Corn cleared - which is a big one so that was great news! He really is starting to enjoy the treatments (the accupressure) and he likes the doctor too. :) He was treated for Grains, which included Wheat, Oats, Tapioca... this is another BIG one so hopefully he can clear it on the first try.<br /><br />Other than that, he still has a bit of a cold but he has been feeling better and he definitely has gained strength. He is doing quite a bit more babbling lately, he is into more toys and definitely more aware of his surroundings in general.<br /><br />We talked more about HBOT and signed up to possibly rent a unit in September (he will most likely need another surgery to close a small opening that remains in his soft palate and we anticipate that to be in August again) the HBOT can help that area heal faster. The only thing the doctor is concerned with are his ears - so we will take a couple dives at her office prior to the rental to make sure that his ears tolerate it. The bad thing about HBOT is that you can't really tell for at least a month sometimes if it is helpful to a particular child and if it is working for him, we would most likely need to rent it for more than 1 month and that is very costly. So we will have to make some decisions on how to handle that when the time comes.<br /><br />Another thing I have been meaning to update on is that Dylan had an IEP done with the school district - right now he qualifies for free preschool that would incorporate speech, OT, and PT - we are not ready to send him yet (I was thinking more like when he is 4 and his immune system is healthy) but they agreed to have a teacher come to the house once a week for an hour to work with him in those areas. So he has seen her 3 times now and will continue for the next few weeks until school is out for the Summer.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-39994716905473787592008-05-02T17:36:00.000-04:002008-05-02T17:41:25.872-04:004th Allergy TreatmentDylan went in yesterday to see if his Amino Acid/Sugar/Garlic treatment cleared - it did! <strong>Yay!</strong> So we moved onto his 4th treatment - Corn.<br /><br />He has been sick all week, bad cold, low grade fever - but he was well enough to go in for the treatment. She tried to do a cranial treatment to relieve his sinuses but he wasn't having it, so she didn't push it. I would have loved to see how it worked for him though - <em>little stinker!</em>Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-48562032659617499062008-04-25T19:20:00.000-04:002008-04-25T21:35:44.010-04:003rd Allergy Treatment and IgG ResultsDylan had his third allergy treatment today. Last Friday he had the second treatment which was for Plastics, prior to having each treatment the doctor checks to see if the previous treatment has cleared and so far he has cleared both treatments. Today was for Amino Acids and Sugars and she threw in Garlic since it showed up as a high delayed reaction on his IgG results. He is doing good with the treatments and has had increased energy and awareness since starting them and the CoQ10.<br /><br />His IgG results FINALLY arrived. They are pretty scary, but since we are already working on the allergy issues we aren't letting it bother us. Out of the 96 foods tested he reacted to 58 of them, 15 in the HIGH range (worst offenders) 13 in the Moderate range and the remainder in LOW, which is still a reaction but not as severe as the rest. Like I said, IF we weren't doing what we are, we would be freaking out, but we have a good feeling about the allergy treatments and the healing of his immune system. His delayed reactions are caused by his weak immune system and the fact that his body still isn't aware of who the good guys and the bad guys are so it is fighting these foods.<br /><br />We will continue to do allergy treatments weekly and will soon start Cranial Sacral therapy. HBOT is still somewhere in the plans, we are leaning towards renting a unit for a month for the convenience of it, that way he will get 30 straight 1 hour sessions.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-10212704217950376302008-04-08T16:15:00.000-04:002008-04-10T13:32:18.728-04:00Dylan's Three! Allergy Elimination and Other Updates...<a href="http://bp3.blogger.com/_5Bjq7lEiwS4/R_1D3mcK7LI/AAAAAAAAADg/A-CjC-JjNt8/s1600-h/Dyl3.jpg"><img id="BLOGGER_PHOTO_ID_5187376968291249330" style="DISPLAY: block; MARGIN: 0px auto 10px; CURSOR: hand; TEXT-ALIGN: center" alt="" src="http://bp3.blogger.com/_5Bjq7lEiwS4/R_1D3mcK7LI/AAAAAAAAADg/A-CjC-JjNt8/s200/Dyl3.jpg" border="0" /></a> Today April 8<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span>, 2008 - Dylan is <strong><span style="color:#3366ff;">Three Years Old!</span></strong> Hard to believe, it seems like just yesterday we were bringing him home from the hospital.<br /><br />It's been awhile since I last updated - so I will try to pick up where I left off - <strong>Enzymes</strong> - Dylan is taking the Enzymes still, but with no noticeable results. We are still waiting for the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">IgG</span> Food Allergy test but in the midst of it all have decided that Allergy Elimination was the way to go. When I called to make his first appointment, it turned out that the next opening was his Birthday and I decided to take it, <em>a new year, a new start</em>...<br /><br />We just got home from the initial consultation and his first allergy treatment, he was tested for the most common allergens today - and came up positive for Soy, Wheat, Corn, Dairy, Coconut, Almonds & Pecans. His supplements & Enzymes were tested too and he came up fine for all of them<em> EXCEPT</em> for <span class="blsp-spelling-error" id="SPELLING_ERROR_2">ThreeLac</span> - (which we had just stopped using a few days ago, because I could tell it just wasn't working for him, and probably was the cause of his regression.)<br /><br />Her recommendation on diet is to stick with what we are doing, oats are fine for him so oatmeal can be continued, we will continue to give the enzymes to help break down any soy or corn, dairy or wheat that he gets. So the diet will not change much, he can still have some infractions and we won't go crazy trying to eliminate every trace amount because he will soon be treated for all allergens.<br /><br />Today's treatment was for the immune system (and boy does he need that!) it can take up to 6 weeks to heal now that the treatment has been done, it also treated some viruses that might be issues. We go back next Friday and he will be treated for Plastics. There are typically 12-15 treatments and in the end he will be treated for all environmental and food allergies, some may not take the first time but the ratio of it working is 85 - 95% of the time, so the odds are in our favor.<br /><br />I did a lot of research and asked in some of my message groups (related to autism) what others had experienced with <span class="blsp-spelling-error" id="SPELLING_ERROR_3">NAET</span> (allergy elimination) and received so many positive responses. For some it was the key to complete healing, for others an opening of the door so that other therapies could be tolerated. Overall it was highly recommended and we are very excited to have the opportunity to do this for Dylan.<br /><em></em><br />One thing that is very nice about a doctor that tests for allergies on the spot is that you can stay ahead of the game by knowing what therapies/remedies your child will benefit from, Dylan was tested for anti-fungals to see what should be used to treat his yeast issue and most of them (including <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Nystatin</span>, <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Diflucan</span> and <span class="blsp-spelling-error" id="SPELLING_ERROR_6">ThreeLac</span> I mentioned above) were not something he would tolerate - he responded best to Biotin and Garlic - so that will be our new yeast fighting plan.<br /><br />We will replace the specially formulated Amino Acid blend with Jay Robb Vanilla Protein Powder that can be taken in his smoothie - so much easier for us! <em>and so much cheaper!<br /></em><br />She was concerned with his bacteria level as it is VERY high, so she is recommending 3 <span class="blsp-spelling-error" id="SPELLING_ERROR_7">Culturelle</span> a day for awhile to get that down, coincidentally, we just restarted <span class="blsp-spelling-error" id="SPELLING_ERROR_8">Culturelle</span> a few days ago when stopping <span class="blsp-spelling-error" id="SPELLING_ERROR_9">ThreeLac</span> because I knew that he did good on it before, so we will just up the dosage.<br /><br />Our recent test results show that Dylan's white blood cell count is very low and his red blood cell count was low as well, she will monitor to see if Anemia is an issue. It could be the <span class="blsp-spelling-error" id="SPELLING_ERROR_10">Actos</span> that interfered with the <span class="blsp-spelling-error" id="SPELLING_ERROR_11">RBC</span> count (which he stopped taking shortly after that test) We feel that it was a very good and positive appointment and are happy with the new plan in healing our beautiful little guy.<br /><br />He did complete 2 months of TTFD and Glutathione Chelation, right now we will hold off on any further chelating until we get further into allergy elimination and she is able to determine what will work best.<br /><br />HBOT is still a recommended treatment and we will be doing that in the near future - just not quite sure when yet.<br /><br />Well I better go wake-up Mr. Sleepyhead or he won't sleep good tonight.<br /><em></em><br /><br /><em></em>Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-60087766135401484572008-02-26T15:02:00.001-05:002008-02-26T15:27:16.941-05:00Chelation and Enzymes...Dylan finished his first month of chelation with the TTFD and Glutathione creams (topical forms) We didn't think we would get through it, for one the smell can be pretty bad - very skunky/rubbery. If you keep the Glutathione away from the TTFD (like one on his upper arm, other on the lower leg) the smell is not as bad. We had to find out the hard way NOT to do the arm and the thigh - super smelly! I nicknamed him <em>Peppy La Pew</em> for a few days there. :) The Glutathione assists the TTFD in removing toxic metals from the body. It is mildly irritating to his skin so we have to move it around with each application. He is on the beginning of his second month now and we will have to consider afterward if we will continue with this or if he should move onto another form of chelation. <em>(Mostly because of his irritated skin, also because when it gets warmer out the smell will be worse.)</em><br /><br />As far as results go, he has definitely been in a regression - this is typical when removing toxins and it is usually followed by gains so we are hopeful that we will see something good soon. It is a waiting game - and waiting sucks!<br /><br />We received the new Houston Enzymes and he has been taking them for a week and a half now. We started with low doses and have worked our way up to 1 capsule each of Peptizyde and Zyme Prime before each meal. So far he seems to be tolerating them fine. He has been burping a little more, but that is common when first starting the enzymes and should subside. We introduced Oatmeal last Thursday and he was very happy about that, if only you could have seen his face light up and eyes sparkle with the first bite! I wish my camera would have been nearby. I have given it everyday since for lunch and so far there are no ill-effects. We hope that this will lead to him being able to tolerate more foods with enzymes.<br /><br />We also received our test kit for the IgG Food Allergy / Sensitivity test and if the weather cooperates I will be taking him in Thursday or Friday for the blood draw, so hopefully in 3 weeks or so we will know what his major offenders are as far as food. We will eventually do the test for environmental issues.<br /><br />He is walking more and more all the time! Still amazing for us to see him<em> walk</em> into a room. Unfortunately, he still hasn't mastered pulling up in the middle of the room alone, <em>still needs to hold onto something to get up.</em> When that day comes, it will be a HUGE milestone! But when we look back to when we started biomedical in October, Dylan was not even standing independently - so he has come a long way already.Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0tag:blogger.com,1999:blog-6099034353084828512.post-86949616076304192212008-02-12T15:50:00.000-05:002008-02-12T18:11:36.626-05:00Some thoughts on the GF/CF diet and Enzymes...So... it has been about 4 months now that Dylan has been on the GFCF (Gluten and Casein Free) diet. And, we are not seeing what we had hoped to. He still has cirles under his eyes (allergy?) and he is still constipated. (Currently being helped by the introduction of dried prunes)<br /><br />Back in August after Dylan had his cleft revision repair, tonsilectomy and adnoid removal - he would not eat or drink any dairy products because when he tried an UNBELIEVABLE amount of mucus would build-up and just pour out of his mouth - <em>Grross!!</em><br /><br />It was around this time that he started to say some spontaneous words, Ani Ina (Auntie Linda) Ella (Lisa), Hun (something me and Keith call eachother often), Ana (for our cat Shana), Ayla or Aylala (for Kayla), Ama (for Grandma and Grandpa)... We were learning about the diet and thought that the major reduction in dairy attributed to this (and it may have) BUT going back some - to July - we started Culturelle, which greatly improved his constipation issues, whereas at one point, he went every few days, he was every or at least <em>every other</em> with it. We stopped Culturelle for his healing period after surgery (couldn't get him to eat/drink anything) and restarted around the time that he started to name things.<br /><br />When starting the DAN protocol we switched to ProBio Gold because Culturelle has a slight amount of Casein in it. The constipation issue soon returned, but we were changing so much that we decided to give it some time.<br /><br />Although Dylan has improved (is doing much more independent walking!) We do not believe that the diet itself is helping in his situation. Most families that are seeing great things from the diet, see it much sooner than this and I believe in some cases where the diet is unnecessary it can actually cause regression.<br /><br />That brings me to Enzymes - Many people have found that they can go off the diet and still get the same (or better) results with using Digestive Enzymes to help breakdown food - and although we have been giving them since November - we have <strong>not</strong> given them at the beginning of the meal as we just recently found out is the way to give them for <em>maximum potency</em> and we have not challenged Gluten or Casein.<br /><br />Dylan is not allergic to Gluten (he was tested specifically for Celiac's Disease) we went off Gluten because it can be hard for ASD (Autism Spectrum Disorder) children to breakdown and in many cases being Gluten Free has been a major key in healing these children - for us, it is not proving as such.<br /><br />We aren't going to jump back into giving Gluten and Casein... We ARE going to order Houston Enzymes and use both Peptizyde and Zyme Prime together while reintroducing individual meals here and there to see what happens. If there are no adverse affects we will go back to a normal diet using Enzymes to aid in digestion and help heal his injured gut. If we notice that he can't tolerate dairy for instance, we will then go back to being dairy (casein) free. I have to add that we are very lucky that Dylan is a very good eater and LOVES his fruits and veggies. What other kid do you know that actually prefers artichokes and asparagus over french fries and mac & cheese? Diet or not, he will continue to eat healthy, organic and artificial color, dye and preservative free (as often as possible).<br /><br />The exciting thing about this is that children that do well on the Enzymes with the reintroduction of these food groups sometimes get <strong><em>much better</em></strong> as they are now able to absorb the nutrients and minerals from the <strong>foods</strong> and they are able to discontinue some of the supplements they are on.<br /><br />In addition we plan on having an IgG Allergy test done, this will point out his food intolerances - so if he has an intolerance to eggs for instance we will be able to take them out of his diet and see if we get results. Sometimes Enzymes can help to eliminate food intolerances as well, but for now knowing what to avoid specifically might bring some positive changes.<br /><br /><em>Doing biomedical for your child is a never-ending learning process - there are so many alternatives out there and the best you can do is try what seems to pertain to your situation and hope for the best. Nobody knows your child better than you do - so even though there is often controversy - going with your own gut, can be the key to healing his.</em>Lynn - Dylan's Mommyhttp://www.blogger.com/profile/03257797742817970228noreply@blogger.com0