So, in spite of some sadness in our family this week with my Grandmother's passing, there have been a couple of bright spots. First off, yesterday was the first day that N was on his full dose of all of his meds! It's exciting to see what happens. While I keep reminding myself to keep my faith in the Lord rather than meds, I am hopeful for continued improvements! One such improvement that we experienced yesterday was that after 2 years of attempts, we were able to get X-rays of his teeth at his dentist appointment! Woo hoo! Prior to this, his sensory issues created a hyper-sensitive gag reflex and he didn't have the bodily control to be able to tough it out. Yesterday he was able to deal with those uncomfortable bite-wings as well as sit for a full minute with the foamy flouride treatment trays in his mouth without any gagging! Thank you Lord for those rays of hope and sunshine in the midst of still-frustrating days!
On a quick side note, I must say that my other bright spot has been with N's little brother G. At 18 months old now, I can't even begin to express how exciting it is to watch him grow and develop "normally". While he still has a vocabulary limited mostly to food items (Hey, he is my kid after all!), his receptive language is perfect. "Where's your cup?" He finds it and brings it to me. "Bring me a book to read." He does. Balm for my soul. I love watching him play with his cars...really play with them, and not just put them in a neatly organized lineup! He rolls them down his kiddie slide. He runs them over the furniture- and the dog. lol He crashes them into each other. He calls them "Vroom vrooms". I know it sounds silly to anyone else, but a Mom with an ill child can relate to how exciting these things are. Of course the bittersweet pill is the knowledge that N was incapable of that until he was almost 5. However, I try to push that guilty thought out of my mind and focus on the blessings before me. God IS good. He can be incomprehensible and mysterious, but He is good and He does send us hope, comfort, and resources-even if it seems like a small flicker of a light in the midst of overwhelming darkness.
I pray that you all have a lovely weekend filled with health, peace, and joy!
Blessings,
Hillary
Friday, October 25, 2013
Friday, September 27, 2013
Quick update!
Well, there's been one great development since the last phone appt in July, but that's about all since we have only just now began on the new meds! Grrr. Alaska is one of 7 states that does not allow out-of-state compounding pharmacies to ship into AK. Since some of the meds had to be refrigerated, we were going to have to overnight them to TX and then have willing family re-freeze the ice packs and overnight it to AK. We were looking at $100+ a month in shipping! So, I've spent the past months calling pharmacies all over the state. I would get some lab-tech who would say "Sure, we should be able to do that," but when the Dr. would call in the script, the pharmacist would deny it. Many of the prescriptions are light sensitive and have to be mixed in special labs which we apparently do not have up here. sigh. Add in a 4 hour time difference between AK and the Dr's office in NY, and it made for a very frustrating time.
In one case, I finally gave in, and we went with B-12 (methyl, not cyano) nasal spray instead of the subcutaneous injections. The injections are much more preferable with great results, but we just could not get them filled and sent easily here. The local compounding pharmacy was willing to order the ingredients for the nasal spray and begin making that here for him, so we took them up on it. He started it last week and has to be on it for a month before we can begin the Namenda (the alzheimers' med).
We also have three more meds that are finally on the way, but the two I'm really excited about are the Namenda and the Mutaflor. When they ran the labs on my boy, they found he had none of the good E.coli in his system and high levels of the bad stuff. So, the Mutaflor is a pure, healthy E.Coli strain to replenish his gut. Also, when I left off last time, I was off to research the Namenda. What I found was so encouraging! They are having huge success with it for ASD kids-especially where the social skill development is involved. Many parents say that their kids suddenly started to 'click' and 'get it'. They were suddenly able to make friends and navigate social circles. That makes so much sense if it is truly working to reduce the inflammation in those areas of the brain! It's also a med that's fairly easy to start or stop, meaning there are little side effects. The biggest problem with it seems to be our good ol' politicized insurance system. Since this is still considered off-label use for ASD, many companies won't cover it. Thankfully ours did since it was going to be $300 for that one med on top of all of the other meds and supplements! Thank you Lord!!
The major development for now is that his headaches are mostly GONE!! Occasionally he'll tell me that they are at a "Level 1" meaning it's a slight headache (versus the "Level 7/8" they used to be at daily!), but it's usually a "Level 0"! I'm so excited for him! "Chronic Daily Headache Syndrome" my foot! I laugh in the face of it. Muahahahaha
Also, he's been soaking daily in epsom salts (magnesium sulfates) and baking soda, and using a cream to replenish his sulfates so that he can process phenols and salicylates. Thankfully, that seems to be working well. His ruddiness is gone, and his skin just looks healthier. We've been weaning off the daily baths and just using the 1/8 tsp cream and it seems to be working well. If he does have a 'flare up' we just know we may have to use the baths as a treatment. Hopefully once we get his gut balanced and the yeast gone, these sensitivites, along with all of the food allergies, will be healed.
Okay, I'm off to start the day. I pray you each have a wonderful, healthy weekend ahead!
Blessings,
Hillary
In one case, I finally gave in, and we went with B-12 (methyl, not cyano) nasal spray instead of the subcutaneous injections. The injections are much more preferable with great results, but we just could not get them filled and sent easily here. The local compounding pharmacy was willing to order the ingredients for the nasal spray and begin making that here for him, so we took them up on it. He started it last week and has to be on it for a month before we can begin the Namenda (the alzheimers' med).
We also have three more meds that are finally on the way, but the two I'm really excited about are the Namenda and the Mutaflor. When they ran the labs on my boy, they found he had none of the good E.coli in his system and high levels of the bad stuff. So, the Mutaflor is a pure, healthy E.Coli strain to replenish his gut. Also, when I left off last time, I was off to research the Namenda. What I found was so encouraging! They are having huge success with it for ASD kids-especially where the social skill development is involved. Many parents say that their kids suddenly started to 'click' and 'get it'. They were suddenly able to make friends and navigate social circles. That makes so much sense if it is truly working to reduce the inflammation in those areas of the brain! It's also a med that's fairly easy to start or stop, meaning there are little side effects. The biggest problem with it seems to be our good ol' politicized insurance system. Since this is still considered off-label use for ASD, many companies won't cover it. Thankfully ours did since it was going to be $300 for that one med on top of all of the other meds and supplements! Thank you Lord!!
The major development for now is that his headaches are mostly GONE!! Occasionally he'll tell me that they are at a "Level 1" meaning it's a slight headache (versus the "Level 7/8" they used to be at daily!), but it's usually a "Level 0"! I'm so excited for him! "Chronic Daily Headache Syndrome" my foot! I laugh in the face of it. Muahahahaha
Also, he's been soaking daily in epsom salts (magnesium sulfates) and baking soda, and using a cream to replenish his sulfates so that he can process phenols and salicylates. Thankfully, that seems to be working well. His ruddiness is gone, and his skin just looks healthier. We've been weaning off the daily baths and just using the 1/8 tsp cream and it seems to be working well. If he does have a 'flare up' we just know we may have to use the baths as a treatment. Hopefully once we get his gut balanced and the yeast gone, these sensitivites, along with all of the food allergies, will be healed.
Okay, I'm off to start the day. I pray you each have a wonderful, healthy weekend ahead!
Blessings,
Hillary
Tuesday, July 23, 2013
One Month Update!
Wow! What a month it's been; loads of summer sunshine and healing for my boy. Who could ask for more??
Okay, to start off with, N has made vast improvement on the yeast infection/gut dysbiosis front. He had 'migraine' type symptoms for exactly one week; headache, nausea, light sensitive, weak. To make it worse, it was over 4th of July! Poor baby. I found via on-line research (and the Dr. confirmed on the phone consult just now) that this is totally typical of the yeast-die off. On day 8, it was like a switch turned off. The migraine symptoms stopped, and since then his headaches have been barely noticable. He said they feel like they did last fall before we started the NIDS diet. (That was back when he didn't have body awareness and was considered hypo-sensitive to touch and feeling.) Hooray! Also, to note that all of this die-off happened just by removing all sugars from his diet and from the high powered probiotics that the Dr. put him on. This was before we even started the Nystatin prescription anti-fungal! Now he's been on the Nystatin for 2 weeks as well, and Nathan said he feels like we "...just brought in the tanks to annihilate the yeast." Spoken like a true boy. haha
Another development is that he also said he's seeing better!? He told me that he used to have times when his eyes would get foggy and blurry, but that's not happening any more and his vision is clearer. I asked him why he never told me, and he said he just thought that was normal! Poor guy! Even if we don't make any more 'progress' in healing him, I think that NY trip was worth it just for the headaches and the vision!!
Thankfully, I just got off the phone for our 1 month follow-up appt. with Dr. Compain (Dr. Bock's associate). We went over the myriad of labs that were collected and the various tweaks we need to make to his meds. Without going into to much private detail, I will gladly share that his gut-flora and bacteria levels were low for the good and high for the bad. Yep, his digestive tract is a mess. Thankfully, we should be able to heal him w/ the probiotics and some anti-microbial prescriptions to kill the bad bac. His minerals and thyroid tested fine which puzzled me since I thought he sounded so typical of thyroid dysfunction w/ the low muscle tone and fatigue. I was starting to feel confused, but this seems to have been answered by his creatine levels being really low. The symptoms of that? Low muscle tone and fatigue! The supplements that we've already started should help tremendously with that, so we'll see.
Um, what else? Let's see. Some of his Vitamin levels were low or borderline. His glutathione (which is the body's main anti-oxidant) was low. This is very common w/ a lot of the neuro-spectrum kids. We will start a prescription cream for that since taking it orally can feed yeast. (To quote my friend "Yeast is evil.") Also, his sulfate level tested low. Sulfates help the body metabolize (drum roll please) phenols and salicylates!!! Remember how I shared that at his physical exam w/ Dr. Bock, he had told us that he saw evidence of that and how we are supposed to be limiting salicylates? Yep, he was spot-on. While I'm not surprised, it's nice to have it confirmed empirically.
I think that's the bulk of the findings so far. We are still working on getting one of his prescriptions filled since Alaska has special rules for out-of-state compounding pharmacies mailing in. We are still working on finding a place in-state that can fill one that should be an injection. If we can't do that, then the 2nd best option is a nasal spray, but the sub-cutaneous injection is definitely preferable.
One other thing that the Dr. mentioned is introducing Namenda in a month or so (after he's been at the full dose of his other scripts for about a month). It's a medicine that is mainly used for alzheimers patients because it reduces brain inflammation. That would make sense as to why they've been having great results with it for spectrum kids the past few years! Since it's going to be used for 'off-label use', I have to sign a consent before he can order it. So, now I'm off to go research and pray about this new option. Thank you, Lord (and Al Gore) for the internet! ;)
Blessings,
Hillary and N
Okay, to start off with, N has made vast improvement on the yeast infection/gut dysbiosis front. He had 'migraine' type symptoms for exactly one week; headache, nausea, light sensitive, weak. To make it worse, it was over 4th of July! Poor baby. I found via on-line research (and the Dr. confirmed on the phone consult just now) that this is totally typical of the yeast-die off. On day 8, it was like a switch turned off. The migraine symptoms stopped, and since then his headaches have been barely noticable. He said they feel like they did last fall before we started the NIDS diet. (That was back when he didn't have body awareness and was considered hypo-sensitive to touch and feeling.) Hooray! Also, to note that all of this die-off happened just by removing all sugars from his diet and from the high powered probiotics that the Dr. put him on. This was before we even started the Nystatin prescription anti-fungal! Now he's been on the Nystatin for 2 weeks as well, and Nathan said he feels like we "...just brought in the tanks to annihilate the yeast." Spoken like a true boy. haha
Another development is that he also said he's seeing better!? He told me that he used to have times when his eyes would get foggy and blurry, but that's not happening any more and his vision is clearer. I asked him why he never told me, and he said he just thought that was normal! Poor guy! Even if we don't make any more 'progress' in healing him, I think that NY trip was worth it just for the headaches and the vision!!
Thankfully, I just got off the phone for our 1 month follow-up appt. with Dr. Compain (Dr. Bock's associate). We went over the myriad of labs that were collected and the various tweaks we need to make to his meds. Without going into to much private detail, I will gladly share that his gut-flora and bacteria levels were low for the good and high for the bad. Yep, his digestive tract is a mess. Thankfully, we should be able to heal him w/ the probiotics and some anti-microbial prescriptions to kill the bad bac. His minerals and thyroid tested fine which puzzled me since I thought he sounded so typical of thyroid dysfunction w/ the low muscle tone and fatigue. I was starting to feel confused, but this seems to have been answered by his creatine levels being really low. The symptoms of that? Low muscle tone and fatigue! The supplements that we've already started should help tremendously with that, so we'll see.
Um, what else? Let's see. Some of his Vitamin levels were low or borderline. His glutathione (which is the body's main anti-oxidant) was low. This is very common w/ a lot of the neuro-spectrum kids. We will start a prescription cream for that since taking it orally can feed yeast. (To quote my friend "Yeast is evil.") Also, his sulfate level tested low. Sulfates help the body metabolize (drum roll please) phenols and salicylates!!! Remember how I shared that at his physical exam w/ Dr. Bock, he had told us that he saw evidence of that and how we are supposed to be limiting salicylates? Yep, he was spot-on. While I'm not surprised, it's nice to have it confirmed empirically.
I think that's the bulk of the findings so far. We are still working on getting one of his prescriptions filled since Alaska has special rules for out-of-state compounding pharmacies mailing in. We are still working on finding a place in-state that can fill one that should be an injection. If we can't do that, then the 2nd best option is a nasal spray, but the sub-cutaneous injection is definitely preferable.
One other thing that the Dr. mentioned is introducing Namenda in a month or so (after he's been at the full dose of his other scripts for about a month). It's a medicine that is mainly used for alzheimers patients because it reduces brain inflammation. That would make sense as to why they've been having great results with it for spectrum kids the past few years! Since it's going to be used for 'off-label use', I have to sign a consent before he can order it. So, now I'm off to go research and pray about this new option. Thank you, Lord (and Al Gore) for the internet! ;)
Blessings,
Hillary and N
Wednesday, June 26, 2013
Update from NY!
We got home 4 days ago, but I am just now sitting down to write. The past few days have been filled with unpacking, research, and more research! What did the Dr. say? Well, here's my attempt to sum up all of the info in some concise bullet points:
1) We won't have the follow up with any of the lab results for a month (except the in-office allergy testing), but from the physical exam and our interview, he concluded that N does have a yeast infection in his digestive system. He has to be on a low carb/sugar diet along with a prescription anti-fungal and powerful probiotics to kill the bad yeast while replenishing the good flora. The yeast causes the cells of the stomach lining not to adhere as tightly as they should, and so they form pin-hole leaks and leak substances into the rest of his body where they shouldn't be. Thus the slang term "Leaky Gut Syndrome". Hopefully many of his food sensitivities will be cleared up once his stomach is healed. Oh-and this was probably caused from the multiple rounds of antibiotics he had as an infant and toddler for chronic ear infections. For some reason, a majority of the kids on the A-list have these ear infections, and so the consequent yeast infection is not uncommon.
2) He also has a problem synthesizing phenols or salicylates. This causes his cheeks to be constantly flushed and could be a trigger of his daily, never-goes-away headaches (The yeast infection could be a cause as well.). We need to put him on a low phenol diet, in which he has very little processed food and plant-based food-especially nuts and veggies! As you can see, this is in direct contrast to the yeast diet which is based on higher intake of veggies! UGH!! What's a Mom to do? Well, thankfully he can eat meat, right?...
3) Well, it turns out he also tested sensitive to beef and pork! AAAAAAHHHH! While we don't eat a lot of pork, the beef is a serious bummer. Thankfully we can buy buffalo (at 12.99/lb!) and free-range chicken that I can grind into sausage. Also Applegate makes an uncured Turkey bacon. Phew! He can also eat all the salmon he wants, but we have to watch the crab, cod, and halibut because of the mercury levels. Thankfully wild-caught AK seafood tends to have lower levels, but we still have to watch it since most of these kids have an impaired ability to expel environmental toxins. Now you see why I've been having to research my little heart out these past few days! What can I feed this kid???
4) Based on his skin mottling on his arms, and his goose bumpy flesh, the Dr. believes that we will see some sort of metabolic issue show up in the lab work in regards to processing vitamins/minerals/fatty acids, et. Also, he agreed that there is a high likelihood of a thyroid issue because of N's low muscle tone and inability to regulate his body temperature.
5) From the behavioral symptoms of anxiety,fear, and inability to transition, as well as inability to read social cueing and interaction, the Dr. is sure that N's amygdala is out of balance. It is causing him to hyper focus on the fear-based behaviors instead of helping him modulate his overall environment and social situations. To calm this down, many docs prescribe a mild SSRI. This Dr. prefers a more natural, gentle approach, and so we are trying a nasal spray of oxytocin (the same hormone a woman's body releases after childbirth and during breastfeeding that is calming). It made sense to me and I prefer natural to synthetic when possible.
6)We are also going to try methyl B-12 injections. This will basically give N's system a boost when it comes to being able to recognize and expel environmental toxins and allergens. We also left with other supplements that mainly focus on the proteins that are needed for neurological development and function. When we get the labs back we will tweak this regiment as needed.
7)Thankfully N tested negative to a mold/mildew allergy since those are so common up here in this rainforest. Hallelujah!
We have one more test to complete here at home and send to the lab, and then after that we will start the meds and supplements. I admit I am cautiously optimistic. I must say, though, that I was HIGHLY impressed with Bock Integrative's facility and staff. They were all so great and understanding. The building is a full clinic, and it was clean with a welcoming yet professional feel. Everyone there was so wonderful with N, and it was great to be able to sit down with a Dr. for over an hour to discuss N at length-not a 15 min. fly by.
If you do decide to go there yourself, I would recommend staying in Kingston, the nearby mid-size city. I booked a room at the HoJo in Saugerties, and had to keep paying toll roads to get to the Dr's office and to Kingston where the mall and movie theater is. Also, rent or bring your TomTom since that area is full of lots of little hamlets and two-lane roads which would be easy to get lost in. For entertainment, there is a 6 Flags park about 2 hours north which made for a great, rewarding day in the midst of long airplaine rides and lab tests. Also, there are tons of great little antique shops, so next time I will definitely be working in an extra day there if possible ;)
Overall, I count this trip as a success. Even if nothing else happens, I found someone who is TRYING to help N and has already identified many physiological reasons that he is probably feeling bad without even getting into the lab results or any of the holistic/integrative side of things. Hopefully all of these different approaches will get his immune system to calm down and his body to balance out to where it needs to be to fully function. While our local Dr. did relent and order some of the labs we needed to help us with costs, she did say that all she recommended for N was to give him the diagnosis "Chronic Daily Headache Syndrome" and to put him back in OT and PT. ??? That being said I am so thankful for options and that the Lord has provided for us to be able to pursue them. Hopefully more mainstream physicians will embrace the research and successes these integrative doctors are having so that more children will have access to being healed.
Again, thank you all so much for your prayers and support. I truly cherish you and it helps me immensely to hear those affirming, encouraging words that keep me focused on the end goal and not the oft overwhelming circumstances.
Blessings,
Hillary
1) We won't have the follow up with any of the lab results for a month (except the in-office allergy testing), but from the physical exam and our interview, he concluded that N does have a yeast infection in his digestive system. He has to be on a low carb/sugar diet along with a prescription anti-fungal and powerful probiotics to kill the bad yeast while replenishing the good flora. The yeast causes the cells of the stomach lining not to adhere as tightly as they should, and so they form pin-hole leaks and leak substances into the rest of his body where they shouldn't be. Thus the slang term "Leaky Gut Syndrome". Hopefully many of his food sensitivities will be cleared up once his stomach is healed. Oh-and this was probably caused from the multiple rounds of antibiotics he had as an infant and toddler for chronic ear infections. For some reason, a majority of the kids on the A-list have these ear infections, and so the consequent yeast infection is not uncommon.
2) He also has a problem synthesizing phenols or salicylates. This causes his cheeks to be constantly flushed and could be a trigger of his daily, never-goes-away headaches (The yeast infection could be a cause as well.). We need to put him on a low phenol diet, in which he has very little processed food and plant-based food-especially nuts and veggies! As you can see, this is in direct contrast to the yeast diet which is based on higher intake of veggies! UGH!! What's a Mom to do? Well, thankfully he can eat meat, right?...
3) Well, it turns out he also tested sensitive to beef and pork! AAAAAAHHHH! While we don't eat a lot of pork, the beef is a serious bummer. Thankfully we can buy buffalo (at 12.99/lb!) and free-range chicken that I can grind into sausage. Also Applegate makes an uncured Turkey bacon. Phew! He can also eat all the salmon he wants, but we have to watch the crab, cod, and halibut because of the mercury levels. Thankfully wild-caught AK seafood tends to have lower levels, but we still have to watch it since most of these kids have an impaired ability to expel environmental toxins. Now you see why I've been having to research my little heart out these past few days! What can I feed this kid???
4) Based on his skin mottling on his arms, and his goose bumpy flesh, the Dr. believes that we will see some sort of metabolic issue show up in the lab work in regards to processing vitamins/minerals/fatty acids, et. Also, he agreed that there is a high likelihood of a thyroid issue because of N's low muscle tone and inability to regulate his body temperature.
5) From the behavioral symptoms of anxiety,fear, and inability to transition, as well as inability to read social cueing and interaction, the Dr. is sure that N's amygdala is out of balance. It is causing him to hyper focus on the fear-based behaviors instead of helping him modulate his overall environment and social situations. To calm this down, many docs prescribe a mild SSRI. This Dr. prefers a more natural, gentle approach, and so we are trying a nasal spray of oxytocin (the same hormone a woman's body releases after childbirth and during breastfeeding that is calming). It made sense to me and I prefer natural to synthetic when possible.
6)We are also going to try methyl B-12 injections. This will basically give N's system a boost when it comes to being able to recognize and expel environmental toxins and allergens. We also left with other supplements that mainly focus on the proteins that are needed for neurological development and function. When we get the labs back we will tweak this regiment as needed.
7)Thankfully N tested negative to a mold/mildew allergy since those are so common up here in this rainforest. Hallelujah!
We have one more test to complete here at home and send to the lab, and then after that we will start the meds and supplements. I admit I am cautiously optimistic. I must say, though, that I was HIGHLY impressed with Bock Integrative's facility and staff. They were all so great and understanding. The building is a full clinic, and it was clean with a welcoming yet professional feel. Everyone there was so wonderful with N, and it was great to be able to sit down with a Dr. for over an hour to discuss N at length-not a 15 min. fly by.
If you do decide to go there yourself, I would recommend staying in Kingston, the nearby mid-size city. I booked a room at the HoJo in Saugerties, and had to keep paying toll roads to get to the Dr's office and to Kingston where the mall and movie theater is. Also, rent or bring your TomTom since that area is full of lots of little hamlets and two-lane roads which would be easy to get lost in. For entertainment, there is a 6 Flags park about 2 hours north which made for a great, rewarding day in the midst of long airplaine rides and lab tests. Also, there are tons of great little antique shops, so next time I will definitely be working in an extra day there if possible ;)
Overall, I count this trip as a success. Even if nothing else happens, I found someone who is TRYING to help N and has already identified many physiological reasons that he is probably feeling bad without even getting into the lab results or any of the holistic/integrative side of things. Hopefully all of these different approaches will get his immune system to calm down and his body to balance out to where it needs to be to fully function. While our local Dr. did relent and order some of the labs we needed to help us with costs, she did say that all she recommended for N was to give him the diagnosis "Chronic Daily Headache Syndrome" and to put him back in OT and PT. ??? That being said I am so thankful for options and that the Lord has provided for us to be able to pursue them. Hopefully more mainstream physicians will embrace the research and successes these integrative doctors are having so that more children will have access to being healed.
Again, thank you all so much for your prayers and support. I truly cherish you and it helps me immensely to hear those affirming, encouraging words that keep me focused on the end goal and not the oft overwhelming circumstances.
Blessings,
Hillary
Monday, June 17, 2013
Here we gooooooo!
Hi everyone! By the time you read this (if Blogger cooperates) N and I will be on the plane headed to Red Hook, NY to see Dr. Bock! We are hopeful and optimistic that he will at least help us clarify some of the allergies/thyroid/candida issues that I'm pretty sure we're dealing with.
Unfortunately our hesitantly cooperative pediatrician has become uncooperative and would not order any more of the remaining chem panel tests and thyroid tests (that we could have done locally). sigh. This means that now we will be paying for all of these out of pocket via Dr. Bock whereas our insurance would've paid had she ordered them as our PCM. Oh well, like the big guy said, we mainly needed her for the SPECT scan, and she did do that... We'll just revisit the pediatrician situation when we return next week.
SO! I would really really appreciate your prayers as N's Twin heads off to summer camp for the first time, Little Sister leaves us in Seattle to join up with my sister and her family, and the Big Guy and Baby G. hold down the fort here. I'm already teary-eyed and so anxious for when we're all back in the same buildling again, but I know that this is all going to be worth it, and it will be wonderful to have some one-on-one time with N. We've looked at the idea of the local petting zoo, tubing down a river, a freshwater beach, and of course Game Stop for him. :) I will hopefully be writing about good news upon our return.
Until then, I pray you each have a wonderful week full of summer sunshine and equally warm memories.
Blessings,
Hillary
Unfortunately our hesitantly cooperative pediatrician has become uncooperative and would not order any more of the remaining chem panel tests and thyroid tests (that we could have done locally). sigh. This means that now we will be paying for all of these out of pocket via Dr. Bock whereas our insurance would've paid had she ordered them as our PCM. Oh well, like the big guy said, we mainly needed her for the SPECT scan, and she did do that... We'll just revisit the pediatrician situation when we return next week.
SO! I would really really appreciate your prayers as N's Twin heads off to summer camp for the first time, Little Sister leaves us in Seattle to join up with my sister and her family, and the Big Guy and Baby G. hold down the fort here. I'm already teary-eyed and so anxious for when we're all back in the same buildling again, but I know that this is all going to be worth it, and it will be wonderful to have some one-on-one time with N. We've looked at the idea of the local petting zoo, tubing down a river, a freshwater beach, and of course Game Stop for him. :) I will hopefully be writing about good news upon our return.
Until then, I pray you each have a wonderful week full of summer sunshine and equally warm memories.
Blessings,
Hillary
Tuesday, April 16, 2013
We Are New York Bound!
Just a quick note before my eyeballs pop out of my head! I feel like I have wasted this beautiful, sunny, Alaskan Spring day on the computer. But in all actuality, it was not a waste; it was a milestone! We got our appointment for June 20th with Dr. Bock, and so spent the remainder of the day making all of the necessary travel arrangements to get me and the boy from Alaska to the East coast. We are so thankful for mileage plans, as well as generous Grandparents and Aunts & Uncles who are encouraging us and blessing our socks off! LOVE THEM!! Plus the timing coincides beautifully with Brent's final days in the CG, and thus, he had no problem getting the time off. He and our younger son will have quality time together while L is at Bible Camp, B is getting to spend a week with her cousins in Oregon, and Nathan and I try to navigate New York. (Gulp!) What a summer this is shaping up to be!
Good night and blessings to you and yours. Thank you, again, for your encouragement and support. We are overflowing with grateful hopefulness and awestruck by our Lord's divine planning.
Blessings,
Hillary
Good night and blessings to you and yours. Thank you, again, for your encouragement and support. We are overflowing with grateful hopefulness and awestruck by our Lord's divine planning.
Blessings,
Hillary
Monday, April 8, 2013
April Update Take 2-We're In!!!!!
YES!! Praise God! So, we had a slight change; well, okay a major change! We changed whom we are going to consult with. After reading yet another book (this one titled Healing the New Childhood Epidemics: Autism, ADHD,Asthma, and Allergies by Dr. Kenneth Bock ) I realized that there are other integrative doctors who treat Autism similarly. While they may not do it under the banner of NIDS, they use an integrative approach that combines traditional medical testing and medications with out-of-the box treatments like anti-fungals, dietary needs, specific supplementation, etc. In fact, I had quite a wake-up call because I thought all of the DAN! (Defeat Autism Now!) doctors were naturopaths who did not have access to the traditional testing methods. While many of them are, there is, also, a team of DAN! doctors who are board certified doctors. In this case, Dr. Bock is a board certified Family Practice doc who has morphed into treating the 4A's out of necessity, and uses most of the same methods as Dr. Goldberg and Dr. Russell. While he doesn't require a SPECT scan, he runs extensive bloodwork testing as well as other analysis. We already have the SPECT so that won't hurt anything, and can show him exactly which areas of the brain are inflamed. He's also done a lot of work in honing the thyroid testing of these patients and found that many who test within normal levels with a traditional test will still have a dysfunctioning thyroid by testing each of the 4 thyroid levels separately. I am especially intrigued by this since Nathan has many of the symptoms of hypo-thyroidism and it is prevalent in my side of the family.
We have prayed for timing and for guidance. Brent and I decided that whoever could get us in first is who we would see. Well, Dr. Bock can schedule an actual appointment for June (once we get our app back in) and Dr. Russell's office is still not accepting new patients (still at #11 to even schedule an appointment).SO, while we are bummed it didn't work out for us to go to a familiar place with family there, N and I are excited to go to New York; a place neither of us have ever been to!
The timing and financial side will be more interesting since it will be when Brent is working two jobs (finishing out the USCG and working as Southeast Radar during the height of fishing season), and Dr. Bock doesn't accept insurance. However, we both feel such peace and excitement about this new development that we are trusting God in both areas and just going to plug along unless He shuts a door.
Thank you so much for continuing to pray for, and encourage us on this journey to healing. We are so excited for N and his future!
Blessings,
Hillary
We have prayed for timing and for guidance. Brent and I decided that whoever could get us in first is who we would see. Well, Dr. Bock can schedule an actual appointment for June (once we get our app back in) and Dr. Russell's office is still not accepting new patients (still at #11 to even schedule an appointment).SO, while we are bummed it didn't work out for us to go to a familiar place with family there, N and I are excited to go to New York; a place neither of us have ever been to!
The timing and financial side will be more interesting since it will be when Brent is working two jobs (finishing out the USCG and working as Southeast Radar during the height of fishing season), and Dr. Bock doesn't accept insurance. However, we both feel such peace and excitement about this new development that we are trusting God in both areas and just going to plug along unless He shuts a door.
Thank you so much for continuing to pray for, and encourage us on this journey to healing. We are so excited for N and his future!
Blessings,
Hillary
Wednesday, April 3, 2013
April update!
Well, I wish this post would say that we are on our way to the doctor, but sadly, no. We're still hovering at #11 on the waiting list, and trusting God for perfect timing in an appointment for our boy. However, we're still working on what we can do while we wait.
For starters, we have narrowed down that his headaches are probably from a yeast/microbe imbalance (aka "Candida Overgrowth" or "Leaky Gut"). We noticed that every time he consumed a lot of sugar or fruit, he would complain that his headaches were worse, or would get this dazed, hung over kind of look about him. He would get spacey and have a hard time focusing, and thus, get very emotional very easily. These are all tell-tale symptoms of the yeast overgrowth, which is common with NIDS kids. It makes sense that he started to get these headaches right when we started the protocol since he began consuming a lot of fresh and dried fruit since we eliminated our other favorite, portable snack foods, i.e. string cheese, popcorn, hard pretzels.
The doctor will probably put him on an anti-fungal, but in the meantime, we are going to try to starve the yeast. As any baker can tell you, yeast feeds off of sugar, so we are eliminating dried fruits, any sugary baked goods and snacks, as well as grapes and bananas. As per the NIDS protocol, we are limiting his fruit to 2 servings a day (or 1 large-ish apple, which are his favorites), and we are rationing his ketchup intake (his favorite condiment on all the eggs and meat that we eat). We have also put him on a super enzyme as well as Kyodophilus probiotics and he drinks a cup of Kefir a day. I am planning to start either making my own goat keifer or goat yogurt since the price is so high, but for now he is getting the stuff from the store cooler...My friend who is also treating her daughter similarly recommended a urine test to specifically check for the Candida levels. Our pediatrician was not familiar with it, so I'm considering whether or not to look for a local naturo-path that may check the levels for us so that we are not waiting on the doctor in TX to tell us what we're pretty sure we know.
Well, that's about all the updating for now. I should add that after 3 days of being fairly sugar-free, N told me that his headache was the best that it's been in a long time. Praise God!
Blessings,
Hillary
For starters, we have narrowed down that his headaches are probably from a yeast/microbe imbalance (aka "Candida Overgrowth" or "Leaky Gut"). We noticed that every time he consumed a lot of sugar or fruit, he would complain that his headaches were worse, or would get this dazed, hung over kind of look about him. He would get spacey and have a hard time focusing, and thus, get very emotional very easily. These are all tell-tale symptoms of the yeast overgrowth, which is common with NIDS kids. It makes sense that he started to get these headaches right when we started the protocol since he began consuming a lot of fresh and dried fruit since we eliminated our other favorite, portable snack foods, i.e. string cheese, popcorn, hard pretzels.
The doctor will probably put him on an anti-fungal, but in the meantime, we are going to try to starve the yeast. As any baker can tell you, yeast feeds off of sugar, so we are eliminating dried fruits, any sugary baked goods and snacks, as well as grapes and bananas. As per the NIDS protocol, we are limiting his fruit to 2 servings a day (or 1 large-ish apple, which are his favorites), and we are rationing his ketchup intake (his favorite condiment on all the eggs and meat that we eat). We have also put him on a super enzyme as well as Kyodophilus probiotics and he drinks a cup of Kefir a day. I am planning to start either making my own goat keifer or goat yogurt since the price is so high, but for now he is getting the stuff from the store cooler...My friend who is also treating her daughter similarly recommended a urine test to specifically check for the Candida levels. Our pediatrician was not familiar with it, so I'm considering whether or not to look for a local naturo-path that may check the levels for us so that we are not waiting on the doctor in TX to tell us what we're pretty sure we know.
Well, that's about all the updating for now. I should add that after 3 days of being fairly sugar-free, N told me that his headache was the best that it's been in a long time. Praise God!
Blessings,
Hillary
Sunday, February 24, 2013
Quick update!
Wow! Things have been happening here and I realized I haven't done a very good job of keeping everyone posted. Sooo, here's the latest:
1) We tried re-introducing citrus, and that seems to be going well-no big changes. However, we've also added in white rice and oats over the past couple of months. I thought he was doing okay with them, but I have noticed that we're back to jumping up and down like a rat terrier when excited or anxious, and he's reverted back to stick figure drawing whereas he was doing full detailed artwork before the re-introduction. So I'm secretly (to avoid more protests) weeding it back out of the cupboards to where we just have those on occasion. When it comes to grains, it just seems like grain-free is his best bet.
2) He is still having the headaches that he began having way back when we started this. We thought that maybe he's had them all along from the inflammation, or that it's from all the new pathways being opened up, but through research and friends have discovered that he is sensitive to salicylates. These are chemicals found in plant immune systems. They cause a host of problems in sensitive people. In N, it seems to mainly be overly ruddy cheeks and headaches. Most plant and veggies are high in them (sigh), but since we switched to very little almond products and only golden delicious apples, and eliminated dried cranberries and raisins (some of the most common offenders), he has said that his headache is mostly gone and his redness is much better. He still is a light rosy pink in the cheeks, but really, I could care less. When he gets older and takes a little more concern and ownership in this whole thing, he can deal with that. I am having to pick my battles after all!
3) In the NIDS yahoo group, I have gleaned a lot more ideas for things I can try on my own while waiting to see the doctor. (Btw, we're still holding strong at #12 on the list. ) One test is 10 days on/10 days off of ibuprofen to help with the inflammation. We are going to begin that tomorrow and see if we find any difference with that regiment.
4) Finally, on my part, I had bloodwork ran last week, and my thyroid is functioning again! I am in the normal range completely off of the synthroid, AND my insulin resistance is not problematic any more! I am off the metformin, and my blood sugars looked perfect! Praise God! Plus, a lot of the issues I've dealt with for all of my adult life with PCOS (poly cystic ovarian syndrom) are resolved! It's crazy; all those years I fought going gluten-free for myself, but when it comes to my kid I didn't only go gluten-free, but grain-free and am personally so much healthier for it! What a knucklehead I was to fight it for so long!
Okay, I think that's it for now. Nighty night everyone!
Blessings,
Hillary
1) We tried re-introducing citrus, and that seems to be going well-no big changes. However, we've also added in white rice and oats over the past couple of months. I thought he was doing okay with them, but I have noticed that we're back to jumping up and down like a rat terrier when excited or anxious, and he's reverted back to stick figure drawing whereas he was doing full detailed artwork before the re-introduction. So I'm secretly (to avoid more protests) weeding it back out of the cupboards to where we just have those on occasion. When it comes to grains, it just seems like grain-free is his best bet.
2) He is still having the headaches that he began having way back when we started this. We thought that maybe he's had them all along from the inflammation, or that it's from all the new pathways being opened up, but through research and friends have discovered that he is sensitive to salicylates. These are chemicals found in plant immune systems. They cause a host of problems in sensitive people. In N, it seems to mainly be overly ruddy cheeks and headaches. Most plant and veggies are high in them (sigh), but since we switched to very little almond products and only golden delicious apples, and eliminated dried cranberries and raisins (some of the most common offenders), he has said that his headache is mostly gone and his redness is much better. He still is a light rosy pink in the cheeks, but really, I could care less. When he gets older and takes a little more concern and ownership in this whole thing, he can deal with that. I am having to pick my battles after all!
3) In the NIDS yahoo group, I have gleaned a lot more ideas for things I can try on my own while waiting to see the doctor. (Btw, we're still holding strong at #12 on the list. ) One test is 10 days on/10 days off of ibuprofen to help with the inflammation. We are going to begin that tomorrow and see if we find any difference with that regiment.
4) Finally, on my part, I had bloodwork ran last week, and my thyroid is functioning again! I am in the normal range completely off of the synthroid, AND my insulin resistance is not problematic any more! I am off the metformin, and my blood sugars looked perfect! Praise God! Plus, a lot of the issues I've dealt with for all of my adult life with PCOS (poly cystic ovarian syndrom) are resolved! It's crazy; all those years I fought going gluten-free for myself, but when it comes to my kid I didn't only go gluten-free, but grain-free and am personally so much healthier for it! What a knucklehead I was to fight it for so long!
Okay, I think that's it for now. Nighty night everyone!
Blessings,
Hillary
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