While researching some therapy options I learned that there is an Ohio Autism Scholarship (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.
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, stims, social and behavioral issues, but since they can get better, recovered completely even - is it Autism? I don't know! 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.)
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 PDD-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 can and will do.
It has been 2 weeks now of the OLE and 3 of the GSE, we haven't really noticed too much but that doesn't mean that it isn't doing anything so we will continue. I am still taking both myself. I did order the Autistique 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 Glutathione patches but I am going to wait until he has been doing the Autistique 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...
The Cleveland Clinic submitted our HBOT request to our insurance finally so we will know what they say soon. We have a phone appt with Dr. Cheryl to go over test results and talk about Chelation next Thursday, October 2nd. I am also going to talk to her about the diagnosis so we can apply for the scholarship. Keep your fingers crossed!
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, Mother Warriors I defintely have to get it!
Started 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!
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.
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.)
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. :)
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.
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.)
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. :)
Started GSE
Dylan and I both started our GSE (Grapefruit Seed Extract) yesterday, Sept. 4th.
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.
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!
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 symptom-wise of the two.
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.
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.
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!
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 symptom-wise of the two.
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.
OAT 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 Culturelle 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 Advanc-C vitamin soon.
His Amino Acid profile looked good, so we will have to see if we can stop supplementing those for now.
He did have some Yeast still so we plan on starting an OLE (Olive Leaf Extract) and GSE (Grapeseed Extract) protocol, OLE helps fight viruses and bacteria and GSE 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.
We got an RX for HBOT to see if we can do it at the Wound Center affiliated with the Cleveland Clinic - right now we are waiting for our Pediatrician to send over records confirming his Hypotonia 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.
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.
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.
His Amino Acid profile looked good, so we will have to see if we can stop supplementing those for now.
He did have some Yeast still so we plan on starting an OLE (Olive Leaf Extract) and GSE (Grapeseed Extract) protocol, OLE helps fight viruses and bacteria and GSE 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.
We got an RX for HBOT to see if we can do it at the Wound Center affiliated with the Cleveland Clinic - right now we are waiting for our Pediatrician to send over records confirming his Hypotonia 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.
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.
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.
Allergy Treatments 12-14
Dylan 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.
We also started a homeopathic treatment for Post Traumatic Stress.
We got the test kit for an OAT (organic acid test) which tests urine for yeast, bacteria, amino acids and other minerals.
He also got an RX for bloodwork to see where his blood count is at and if he's ready for chelation.
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.
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.
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.
We also started a homeopathic treatment for Post Traumatic Stress.
We got the test kit for an OAT (organic acid test) which tests urine for yeast, bacteria, amino acids and other minerals.
He also got an RX for bloodwork to see where his blood count is at and if he's ready for chelation.
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.
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.
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.
11th Allergy Treatment
Dylan 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
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.
He will have at least 2 more Allergy Elimination Treatments, One for Outdoor Environmental (A biggy) and another for Viruses and Heavy Metals.
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.
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.
He will have at least 2 more Allergy Elimination Treatments, One for Outdoor Environmental (A biggy) and another for Viruses and Heavy Metals.
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.
Allergy Treatments #9 and 10
Last 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...)
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.
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 one if it did, has turned into three - with one of the supposed best hospitals in the world... But that is another story!
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.
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 one if it did, has turned into three - with one of the supposed best hospitals in the world... But that is another story!
8th Allergy Treatment
We 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.
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.
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!
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.
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!
7th Allergy Treatment
Dylan cleared Fruits and Fruit Juices so he was treated for Dairy, Casein, Lactose, Chocolate... he had a strong reaction to chocolate! Poor boy!
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.
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.
Other than that not much is new. Hope everyone had a great Memorial Day weekend.
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.
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.
Other than that not much is new. Hope everyone had a great Memorial Day weekend.
6th Allergy Treatment
Boy 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 by a whole day! 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 (she remembered) I said it wasn't until tomorrow...
So I called and they were very nice about it and fit him in for a later appointment this afternoon. Whew! That was close! 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.
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.
Go CAVS!
So I called and they were very nice about it and fit him in for a later appointment this afternoon. Whew! That was close! 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.
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.
Go CAVS!
5th Allergy Treatment
We 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.
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.
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.
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.
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.
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.
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.
4th Allergy Treatment
Dylan went in yesterday to see if his Amino Acid/Sugar/Garlic treatment cleared - it did! Yay! So we moved onto his 4th treatment - Corn.
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 - little stinker!
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 - little stinker!
3rd Allergy Treatment and IgG Results
Dylan 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.
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.
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.
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.
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.
Dylan's Three! Allergy Elimination and Other Updates...
Today April 8th, 2008 - Dylan is Three Years Old! Hard to believe, it seems like just yesterday we were bringing him home from the hospital.It's been awhile since I last updated - so I will try to pick up where I left off - Enzymes - Dylan is taking the Enzymes still, but with no noticeable results. We are still waiting for the IgG 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, a new year, a new start...
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 EXCEPT for ThreeLac - (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.)
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.
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.
I did a lot of research and asked in some of my message groups (related to autism) what others had experienced with NAET (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.
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 Nystatin, Diflucan and ThreeLac 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.
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! and so much cheaper!
She was concerned with his bacteria level as it is VERY high, so she is recommending 3 Culturelle a day for awhile to get that down, coincidentally, we just restarted Culturelle a few days ago when stopping ThreeLac because I knew that he did good on it before, so we will just up the dosage.
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 Actos that interfered with the RBC 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.
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.
HBOT is still a recommended treatment and we will be doing that in the near future - just not quite sure when yet.
Well I better go wake-up Mr. Sleepyhead or he won't sleep good tonight.
Chelation 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 Peppy La Pew 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. (Mostly because of his irritated skin, also because when it gets warmer out the smell will be worse.)
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!
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.
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.
He is walking more and more all the time! Still amazing for us to see him walk into a room. Unfortunately, he still hasn't mastered pulling up in the middle of the room alone, still needs to hold onto something to get up. 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.
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!
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.
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.
He is walking more and more all the time! Still amazing for us to see him walk into a room. Unfortunately, he still hasn't mastered pulling up in the middle of the room alone, still needs to hold onto something to get up. 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.
Some 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)
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 - Grross!!
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 every other 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.
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.
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.
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 not given them at the beginning of the meal as we just recently found out is the way to give them for maximum potency and we have not challenged Gluten or Casein.
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.
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).
The exciting thing about this is that children that do well on the Enzymes with the reintroduction of these food groups sometimes get much better as they are now able to absorb the nutrients and minerals from the foods and they are able to discontinue some of the supplements they are on.
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.
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.
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 - Grross!!
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 every other 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.
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.
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.
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 not given them at the beginning of the meal as we just recently found out is the way to give them for maximum potency and we have not challenged Gluten or Casein.
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.
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).
The exciting thing about this is that children that do well on the Enzymes with the reintroduction of these food groups sometimes get much better as they are now able to absorb the nutrients and minerals from the foods and they are able to discontinue some of the supplements they are on.
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.
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.
Some Progress and Our Third Appointment
Dylan started to do some independent walking all around the house a few days before Christmas Eve, it was so exciting! He was walking back and forth to us and just walked right out of the room! In the weeks to follow he is still doing this when he feels like it, he still hasn't pulled up to stand from the middle of the room yet, so we think when he can do that he will be a full time walker - but in the meantime, this is still great progress!
His left eye would turn sometimes and he would get a blank stare from time to time, since the DAN protocol this hardly ever happens anymore. His eyes look good and he seems more alert.
He can get up and down off of the living room furniture and off of the dining room chair by himself!
Third Appointment:
On January 15th 2008 we went in to get a couple test results and to decide what steps to take next, the test results showed that his calcium level already went up by 50%! But he was now low in Selenium, so we are adding that to the supplement schedule.
His white blood cell count was low - not alarmingly but something to keep an eye on.
We decided to finish up the Nystatin and then start ThreeLac (a natural probiotic/yeast fighter) this will also eliminate the ProBio Gold for now. He will start 3 Zinc capsules a day instead of the 2 and we will step the Actos up to 3/4 tablet, and Carnitine to 1 full capsule, we will also start giving the MB12 shots every other day.
We had to weigh our options, Chelation vs HBOT first - and we decided (due to unpredictable weather) that we would do Chelation first. So we will be starting that next week. We are starting with a very gentle natural chelator TTFD (a form of vitamin B1) because Dylan is still so low in minerals and some of the more effective forms of chelating can pull minerals with the metals and we don't want to alter our progress or have Dylan regress. If this form is ineffective or causes severe rashing we will move onto another one. This is a topical chelator in the form of a cream that will be applied to the skin - we hear it is not so good as far as smell goes (sort of rubber like) so we'll see.
We plan to start HBOT in March - when the weather is more predictable and we know we can make it 3X a week. (20 sessions are recommended at 1 hour intervals, 3X a week)
So far, things are going good, he is tolerating everything and making slow and steady progress.
His left eye would turn sometimes and he would get a blank stare from time to time, since the DAN protocol this hardly ever happens anymore. His eyes look good and he seems more alert.
He can get up and down off of the living room furniture and off of the dining room chair by himself!
Third Appointment:
On January 15th 2008 we went in to get a couple test results and to decide what steps to take next, the test results showed that his calcium level already went up by 50%! But he was now low in Selenium, so we are adding that to the supplement schedule.
His white blood cell count was low - not alarmingly but something to keep an eye on.
We decided to finish up the Nystatin and then start ThreeLac (a natural probiotic/yeast fighter) this will also eliminate the ProBio Gold for now. He will start 3 Zinc capsules a day instead of the 2 and we will step the Actos up to 3/4 tablet, and Carnitine to 1 full capsule, we will also start giving the MB12 shots every other day.
We had to weigh our options, Chelation vs HBOT first - and we decided (due to unpredictable weather) that we would do Chelation first. So we will be starting that next week. We are starting with a very gentle natural chelator TTFD (a form of vitamin B1) because Dylan is still so low in minerals and some of the more effective forms of chelating can pull minerals with the metals and we don't want to alter our progress or have Dylan regress. If this form is ineffective or causes severe rashing we will move onto another one. This is a topical chelator in the form of a cream that will be applied to the skin - we hear it is not so good as far as smell goes (sort of rubber like) so we'll see.
We plan to start HBOT in March - when the weather is more predictable and we know we can make it 3X a week. (20 sessions are recommended at 1 hour intervals, 3X a week)
So far, things are going good, he is tolerating everything and making slow and steady progress.
The Results Appointment
We went back in the beginning of November for our results appointment - in the meantime between these 2 appointments, Dylan had started to stand more independently and was starting to take steps back and forth to us. (Huge Progress!)The results were overwhelming
Dylan had a weakened immune system, he was not metabolizing correctly, his thyroid was off, he was low in Calcium, Boron and Zinc (all key minerals) he had a yeast and bacteria overgrowth, his allergy level was very high - the doctor explained that his body couldn't tell the good guys from the bad guys and so it would fight off things like certain foods instead of things that were harmful to him, such as viruses, metals, etc. Dylan also has high levels of heavy metals in his little body.
All of this was what we expected, not easy to hear, but finally we had answers - and the biggest thing was that There Is Hope! All of this can be reversed. Not overnight, and not without a lot of work, but it can happen.
The protocol we were to start:
Nystatin for yeast 3X a day
ProBio Gold (probiotic)2 capsules daily
Digestive Enzymes 3X daily
Specially formulated Amino Acids 2X daily (on empty stomach between meals)
Taurine
Carnitine
Calcium
Boron
Zinc
Cod Liver Oil
Actos
Thyroid pill
MB12 Shots 2X a week
GFCF diet
All of this would be slowly implemented until he got up to his dosage and then we would meet with the doctor again to talk about Chelation (metal detox) and HBOT (hyperbaric oxygen therapy)
How did all of this happen? Most likely it is the result of his slow start with eating, his surgeries, antibiotic use, cold and allergy medicine, and his vaccinations. When a child is suffering with a weak immune system - instead of making them immune to the viruses - they are picking up those viruses and also the mercury that is still in so many of the shots that our kids are getting today. (This would be labeled as: Thimersol)
First DAN! Appointment
Finally October 8th was here! We were going to find out soon if our instincts were right and whether or not Dylan would benefit from the biomedical approach.
Our appointment was very thorough, immediately the doctor could tell that Dylan had a vitamin A deficiency - he got his first MB12 shot right there in the office, we also started ProBio Gold (a probiotic) and Cod Liver Oil to supplement for Vitamin A & D. Several blood and urine tests were ordered, we left with lots of information and high hopes of possibly getting a diagnosis (finally!) A big plus was that Dylan liked the doctor right away!
Dylan would start the GFCF (Gluten (wheat) Free, Casein (dairy) Free)diet slowly within the next couple of weeks. We noticed after his 2nd Cleft repair that when he stopped drinking milk (built mucus and made him choke during healing) that he became more attentive and started to say a couple words. The doctor explained that Dairy and Gluten are like Opiates to these kids and they crave them because they keep them on a high which keeps them in a fog. Dylan did replace his dairy with a wheat craving - so we knew that he would be a candidate for the diet.
Our appointment was very thorough, immediately the doctor could tell that Dylan had a vitamin A deficiency - he got his first MB12 shot right there in the office, we also started ProBio Gold (a probiotic) and Cod Liver Oil to supplement for Vitamin A & D. Several blood and urine tests were ordered, we left with lots of information and high hopes of possibly getting a diagnosis (finally!) A big plus was that Dylan liked the doctor right away!
Dylan would start the GFCF (Gluten (wheat) Free, Casein (dairy) Free)diet slowly within the next couple of weeks. We noticed after his 2nd Cleft repair that when he stopped drinking milk (built mucus and made him choke during healing) that he became more attentive and started to say a couple words. The doctor explained that Dairy and Gluten are like Opiates to these kids and they crave them because they keep them on a high which keeps them in a fog. Dylan did replace his dairy with a wheat craving - so we knew that he would be a candidate for the diet.
How to pay?
When we made our initial DAN! visit in April of 2007 the waiting list was 6 months, Dylan's appointment would be October 8 - the day he turned 2 1/2.
What we weren't expecting was to find that DAN doctors can't take insurance because the medical industry does not believe in the biomedical approach and we certainly did not expect to find that it would be so expensive.
We almost cancelled the appointment not knowing how we were going to handle the cost but when a relative sent us some information about a doctor she knew in her hometown that was healing children and that she had seen the results with her own eyes, we knew that we had to find a way to do this for our son.
We were very very fortunate to have not only our loving families, friends and coworkers but also a large number of strangers pull together to help us out with some of the upcoming costs. It is something that we are very greatful for and we will never forget the sincere generosity of everyone that helped us out.
What we weren't expecting was to find that DAN doctors can't take insurance because the medical industry does not believe in the biomedical approach and we certainly did not expect to find that it would be so expensive.
We almost cancelled the appointment not knowing how we were going to handle the cost but when a relative sent us some information about a doctor she knew in her hometown that was healing children and that she had seen the results with her own eyes, we knew that we had to find a way to do this for our son.
We were very very fortunate to have not only our loving families, friends and coworkers but also a large number of strangers pull together to help us out with some of the upcoming costs. It is something that we are very greatful for and we will never forget the sincere generosity of everyone that helped us out.
What our little guy has been through...
Initial feeding problems, syringe feeding to bring up weight
He had his first set of ear tubes at 7 months
He had an MRI at 9 months
His initial cleft repair, new ear tubes and a hearing test at 14 months
Ear tubes (AGAIN!) at 21 months
A Cleft Revision Repair, Tonsils and Adnoids removed, and yes another set of ear tubes at 28 months
So he was put under 5 times before he was even 2 1/2, he had also been on antibiotics a couple times for either ear or sinus problems and lived on allergy medicine for the entire spring of 2007.
He had physical and speech therapy weekly from December 2006 to August 2007 with minimal to no results. Just a miserable little guy when he had to be there.
He had his first set of ear tubes at 7 months
He had an MRI at 9 months
His initial cleft repair, new ear tubes and a hearing test at 14 months
Ear tubes (AGAIN!) at 21 months
A Cleft Revision Repair, Tonsils and Adnoids removed, and yes another set of ear tubes at 28 months
So he was put under 5 times before he was even 2 1/2, he had also been on antibiotics a couple times for either ear or sinus problems and lived on allergy medicine for the entire spring of 2007.
He had physical and speech therapy weekly from December 2006 to August 2007 with minimal to no results. Just a miserable little guy when he had to be there.
Our Story
Dylan was born on April 8th, 2005 - Weighing 8lbs, 1.2oz. He scored 9 and 9 on the apgars. He was perfect! It wasn't until day 2 in the hospital that they discovered he had a soft palate cleft (an opening in his soft palate, his was split into a "v" and he did not have a uvula - the little punching bag in the back of your mouth) They explained that this was the most common of birth defects and that he would probably need a repair but would otherwise have a normal life.
He came home with us on schedule despite the fact that he wasn't eating well because he couldn't get good suction. He lost weight and we were in for several doctor visits in those first few weeks. We had to syringe feed him to get his weight up and then use a special squeezy bottle to assist him. Other than this slow start he was meeting milestones on time (other than getting his teeth late)in his first year. But when he turned 18 months he was still not walking and any words he did have were lost.
We wanted answers and started with tons of genetic testing, he had an MRI and mitochondrial testing, celiac disease testing... all with normal results. All that they could tell us was that he was a little low tone (hypotonia) but they couldn't tell us the reason. Hypotonia is a condition that is typically the result of an underlying cause.
I did my own research and found that Dylan's symptoms and delays were all very common in Autistic children. BUT Dylan was social, he made eye contact, he liked being close to those he loved, he had likes and dislikes, etc. He smiled and laughed all the time and appropriately. Even with all of that we couldn't ignore the similarities so we decided to make our first DAN! appointment.
He came home with us on schedule despite the fact that he wasn't eating well because he couldn't get good suction. He lost weight and we were in for several doctor visits in those first few weeks. We had to syringe feed him to get his weight up and then use a special squeezy bottle to assist him. Other than this slow start he was meeting milestones on time (other than getting his teeth late)in his first year. But when he turned 18 months he was still not walking and any words he did have were lost.
We wanted answers and started with tons of genetic testing, he had an MRI and mitochondrial testing, celiac disease testing... all with normal results. All that they could tell us was that he was a little low tone (hypotonia) but they couldn't tell us the reason. Hypotonia is a condition that is typically the result of an underlying cause.
I did my own research and found that Dylan's symptoms and delays were all very common in Autistic children. BUT Dylan was social, he made eye contact, he liked being close to those he loved, he had likes and dislikes, etc. He smiled and laughed all the time and appropriately. Even with all of that we couldn't ignore the similarities so we decided to make our first DAN! appointment.
Subscribe to:
Posts (Atom)
Posts
