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Posts Tagged ‘developmental delay’

Some days I wonder, “Is it worth it?” It seems like everyday I wake up to do battle. A battle for the well-being of my son. Every meal, every snack, every grocery trip, specialty food stores, supplements, vitamins, everytime I clean or wash something I work to keep things as toxin free as possible and the food allergen free, nutritious, and healing – and that means from scratch with unusual ingredients! And that’s routine, then there are the other battles – the insurance company (they still haven’t paid a penny for his treatments, even mainstream allergy and GI issue treatment), the doctors, friends and society and the perception of what we are doing. Many who think I’m wrong. Battling to find or create a treatment plan that will work for him. Most days it feel like uncharted territory and for us to discover it is the only way to move forward.

The sacrifice of a social life and friends. We don’t often get together with others. Food is usually involved. Most people don’t get excited about dairy free, yeast free, gluten free, color free…do I really need to keep going? And, well, I’ve lived in a cave for 2 years – a cave called allergies, developmental delay, autism, toxins, neurotoxicity, nutrition, health, and recovery. My every waking moment dedicated to the care of my boys and research. Not exactly uplifting topics for casual conversation.  Yet, I don’t have much else to talk about. I can listen. But, I nearly go insane as I listen to new mothers go on and on about how awful their life is with their colicky 6 week old baby and how they can’t sleep through the night and they are so exhausted. Yet, who don’t want any real help – just a pill to cure it.

I’ve become a conspiracy theory person (the kind I use to look at cross-eyed because I thought they were crazy, yup, that’s me now)- Big Pharma (the pharmaceutical companies) having the power to control gov’t, the CDC (Centers for Disease Control) vaccine recommendations, the AAP (American Academy of Pediatrics) who still won’t acknowledge that Autism is treatable, and the FDA (Food and Drug Administration) and what they do or don’t approve as safe, and of course the media. Yes, I’ve completely lost my trust in much of the information from these sources. Yet, this is who everyone else listens to so I feel like it’s a battle against all of them (gov’t, it’s agencies, media, pharma, mainstream medicine) plus against all of the misinformation everyone else around me believes from them and hits me with (as if I haven’t heard it and looked into it already). I try to look at these as educational opportunities the problems is – who would you believe? A mom with a kid with developmental problems or the CDC, AAP, FDA, the media, and your doctor? I know who I used to believe and lets just say, I thought the mom was craaazy. So, most people don’t really want to be educated. They like their comfortable bubble with their misinformation. Who can blame them. I’m exhausted fighting this fight and if it wasn’t absolutely necessary, if I had had any other option, I would have taken it. My options were let my child starve, feed him foods he was allergic to and watch him vomit, scream, writhe in pain, and not develop mentally, or find another way – one nobody knew about. But since I didn’t have any other option  I stand and I fight not just for my son but for all those who currently have other options (reflux meds, ear tubes, nebulizers, allergy meds, seizure meds, speech therapy, occupational therapy, physical therapy, etc) and keep trying to take them, but many of their kids aren’t getting better – for the few who will seek other solutions, I fight.

A WORD OF ENCOURAGEMENT

Is it worth it? So often, I just get tired. Just plain tired. But also tired of fighting the system and seemingly everyone and everything (except my husband, of course – he’s an incredible warrior too!). Some days I just want to give up and give in – let’s go to McD’s and get chicken nuggets, fries, and some fruit punch!  Let’s stop on a great summer day and get an ice cream cone! Ah, the relief not to have to pack all meals and snacks ahead of time, to stop and get a treat that wasn’t specially planned for, prepared, and saved for the occation.

My family visited a week ago – my parents and my brother and his family. The last time we had seen them (except Mom, she was down for a visit in between) was for one week around the 1st of January, so it has been just over 4 months. Other than the diet, which we have done all along, we started his new treatments in December – cranial sacral, supplementation, and a little detox (started in April). 

My dad and brother both were amazed at Jordan. Dad went on and on about how Jordan would run up to him and look him straight in the eye as he was running around playing and how he repeatedly did that and kept coming back and “checking” and to sblueberry mustache-1ee what Dad was up to, where he was, etc. Haahum, Grandpa is known to be playful and to be there one minute and hiding around the corner waiting to startle you as you come looking for him the next minute! Dad talked about how you could look into Jordan’s eyes and see him thinking and processing everything, but instantaneously, no pausing needing to think about it or work to figure things out. Just looking at one thing, got it, and on to the next, no pause, no confusion, just alert understanding. It only took Jordan a couple minutes to warm up to him when they arrived – it used to take a couple of days, and even then he would be reserved, shy, fearful, look at his cousins out of the corner of his eye and he certainly still wanted, “Mommmyyyyyyy.” Not anymore! Jordan was all about playing with his Grandpa, uncle and cousins, no reservation, no fear – Mommy, where was she anyway? Who knows? Who cares? We have a very playful, silly, loving Grandpa visiting!

My brother noticed the difference in Jordan too. He commented that it seemed like Jordan had grown a year’s worth in the 4 months since they had seen him last! Ahhh, all words that do a warring mommy’s heart good – and I have to agree with his assessment. Jordan does seem like a 2 year old now.

Is it worth it? Oh to stop and enjoy that summer ice cream cone or see cookie crumbles on the edges of his mouth 🙂  But, then I remember where we’ve been and how far he has come, and the blueberry coconut milk smoothie mustache – made at home (with some supplements added in it too) – is just great!

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“It’s not that our opponents are ignorant, it’s just that so much of what they know, just isn’t so.” –President Ronald Reagan

Many days it can be frustrating to know what I know about health, autism, sensory issues, allergies,  their causes, and live in this society. There is so much misinformation about treatments for autism and developmental delays, etc. The main push is: go do some therapies like ABA, physical therapy, occupational therapy, speech therapy, socialization, etc. And the sooner you get those therapies for you child, the greater chance there is for a better outcome. Let me be clear about this – I am NOT against these therapies. They CAN be helpful. However, they are only minimally helpful if that is the ONLY treatment these children get.  If these children get other treatments FIRST, or even simultaneously, these forms of therapy will be exponentially more helpful. But, often times these therapies are the only thing moms hear about to help their child.

First we must get rid of the things in the child life that are harming the functioning of the brain and body. Things like food allergens (casein, gluten, and others specific to the child), foods that in general harm the body and alter how it functions (sugar, caffeine),  and chemical inputs (perfumes, cleaners, detergents, soaps, lotions, etc that are all toxic). These are all things that can be done at home relatively inexpensively. And these are very critical first steps, and can be done even before (or without ever) starting treatments with a doctor.

Second, we need to address what is physically wrong with the child. For this, additional professional help is needed. Is the child’s head misshapen or are some of the cranial bones overlapping or out of place? (If so, the brain is likely not getting nutrients to all the right places in adequate amounts).  Is there an overgrowth of yeast? Does the child have heavy metal toxicity? Does the child have chronic diarrhea or constipation? What does the child’s vitamin/mineral profile look like?  And other similar things.

These issues are critical to treatment, and all the therapies (physical, occupational, ABA, etc)  in the world will not correct them. Not only will it not correct them, until these issues are addressed, the brain’s functioning is compromised and the therapies will only be minimally effective. They may show some good results, but if these things were addressed the results would be so much more!

So the media is celebrating new advances and cutting-edge therapies for autism. For example, just last week the Today Show did a special on how they are now using robots to teach autistic kids socialization skills. It’s so cutting-edge and exciting. Before there was no hope for treating autistic kids, but now there are robots!!! And there has been 60 million dollars donated to this research about using the robots.  But they are missing the boat. If the things compromising the functioning of the brain and the physical problems are dealt with FIRST, then the therapies (including robots) utilized – to teach the kids what they missed learning when their brains couldn’t function properly – that would be a breakthrough!

It isn’t that these scientists, doctors, moms are ignorant, not at all, in fact they are very knowledgeable, they just have wrong information or are missing information. Ronald Regan said it perfectly, “so much of what they know just isn’t so.”

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The cranial sacral treatments we did from December through February helped tremendously, as you noticed in my posts in February. We started the anti-fungals the end of February and everything fell apart. He regressed terribly. His speech didn’t disappear, but he stopped advancing and regressed some and his behavior went downhill – lots of tantrums again, head banging, wanting to be held and carried a lot.

Now we’ve made it to April and he has been off the anti-fungals for 3-4 weeks. He is pretty much back to where he was the middle of February. We’ve been continuing the cranial sacral appointments all this time. He’s doing great again. He is gaining speech again and his behavior is improving. Mondays cranial sacral appointment (Dr. R.) made a tremendous difference. The appointment Monday was one like I had never seen before. Jordan went through 3 stages in the appointment. He was quiet, sullen, and shy at the beginning (fairly normal for recent weeks). He got a little fussy and cranky when Dr. R tried to evaluate him and wouldn’t cooperate. Dr. R then held him by his ankles upside down, which Jordan thoroughly enjoyed. Dr. R would relax his hold on one leg and then switch, basically his legs looked like he was walking  but upside down. The more he did this you could actually see Jordan’s range of motion increase  and stiffness in his body decrease. His back and neck arched and extended more each time – a very good thing. Jordan was okay while upside down  and Dr. R did this for a few minutes. After he put Jordan down, upright, within a few seconds Jordan was very aggitated, fussying, staying close to the ground instead of standing and walking, and banged his head on the lightly carpeted floor twice, hard, a couple minutes apart. After the second head banging, Dr. R sat Jordan on his lap and worked on Jordan’s skull for quite a while. When Dr. R was done, Jordan was happy, jovial, and bounced off to play with the toys in the room. The change in him was amazing!  This week, he has not banged his head once, not even during his tantrums. In fact, I even saw him start the motion once and stop himself before his head hit the floor 🙂  This is a very encouraging and pleasant change. It was horrible watching and listening to his head bounce off the floor like a bowling ball. However, I had long since given up on stopping him. No matter how many times I’d stop him and pull him away, try to hold him and restrain him, he’d fight me until he got away and head straight for the tile floor. Hopefully our days of head banging are going to be few and far between, if not gone forever!

Although I say he’s pretty much back to where he was the middle of February, there are some differences. With his speech, in February he was saying entire statements when he combined words like, “Read a book” or “There you go” (as he handed me his empty plate) now he is missing connection words, but gets more main words such as, “Mommy, come help down chair” (when he needs me to help him down out of his chair). He is using more variety in his language and can communicate just about anything he wants to now! He’s even started with the, “Watch, Mommy” for all his new (or not so new) feats. You may not realize why this phrase is exciting. Not only is it great he has the language, it’s really great because it means that he’s far enough away from me that I can “watch him” since I’m not holding him, or more acurately, he’s not clinging to me screaming like banchee every time I attempt to put him down. He’s actually off on his own playing! Very exciting stuff! You just need to know a few quirks like “strawberry” can mean “strawberry”,  “blueberry”, “blackberry” or “raspberry”; “juice” could mean “juice” or “water”. With his behavior, tantrums, fear, etc he is not quite back to where he was in February, he’s still more moody and sullen, but in the last week has made great strides in the direction of happiness and independence – thanks to his cranial sacral tx on Monday! It’s incredible to hear his great belly laugh quite regularly 🙂

I had been going to give the prescription anti-fungals one more try so that he could get the LDA shot, but he has been doing so great off of them and they affected him so severely we have decided to abandon that line of treatment completely and go for a more natural route. We will keep it in the back of our minds as a last resort should we need to come back to it. Currently, we are giving him a rest this month, keeping up his diet and cranial sacral appointments, and doing his brain therapy exercises while we wait for the consult with the Pittsburgh doctor the end of April. Oh, we did just start (this week) a new natural detox supplement called Neurocleanse. So far we have seen good results (a substantial increase of horribly stinkin’ poop which is great – that means his body is getting rid of bad stuff) and no negative reactions!

So that’s the latest, thanks for keeping up and praying for Jordan and us!

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sarahjordan-basball-cap-1Jordan’s chiropractic neurology/cranial sacral treatments are going so well. He has been in treatment just over 2 months now. Every week holds new advances. He’s doing so great, catching up to what is appropriate for his age at lightning speed. Each week I think we have arrived and his advances will plateau and then a whole additional realm of development seems to open up. In the last 2 months, I would say he has had at least 7 months worth of development. In the last two weeks, everything has come together.

Communication. Last week he started adding certain phrases into his regularly used vocabulary – “Thank you, Mommy”, “Here you go, Mommy”. This from a kid who 3 months ago couldn’t say “Mama” or “Dada” and would just stare at me when I asked, “Where’s your nose?” For the last few weeks, I’ve been writing down the words he adds to his vocabulary. He’s been averaging about 2 per day, which I’ve been ectastic about! Between 15-18 months of age, not only did he not add a single word to his vocabulary, he lost many words that he had been proficient in up to that point. Then last Wednesday, he added 9 new words or phrases THAT DAY, whoa! He’s adding words to his vocabulary so quickly I quit keeping track this week!

Independence. Wow. For nearly two years now (he’s 23 months old) he has been glued to me. If I left the house without him, it was cause for a major meltdown. This didn’t just apply to leaving the house – walking to another room or setting him down instead of carrying him were certainly cause for great distress! For months (actually an entire year, from about 5 months old to around 17 months old), I had my kitchen set up so I could do everything one-handed because his backside was attached to my left forearm. My arm was like his permanent chair and should he be removed for any reason, terror-stricken frenzy would ensue – for hours. The up side was that I had the greatest bicepts of my life!

This week, his grandparents took him to the park. As he RAN out of the house, he turned and said, “Bye, Mommy” – no tears, no wailing, no flopping on the floor acting as if the world was about to implode, not even a frown, actually he was smiling. A joy-filled face excited to greet this day’s adventure!

Who is this little guy? He has changed so rapidly I hardly recognize him. I’m still shocked by occurances such as this. 🙂

Happy. A couple of days ago, Jordan awoke from his nap. How do I know when he is awake? Well, for months (perhaps about 20 of them), I would hear crying or screaming and know my little guy was no longer slumbering, but was now begging (or demanding) to have Mama’s company. The last couple of months this has gradually changed to hearing babbling, or more often the repeated mantra, “Mommy, mommy, mommy, mommy”. But on this day, emanating from his room I hear:  “Ashes, ashes, fall down!” (crash) “Ashes, ashes, ashes, fall down!” (crash) “Ashes, ashes, ashes, ashes, ashes, ashes, ashes, ashes, ashes, fall down!” (crash). How cute. And not just cute, but amazing! He’s singing. He’s remembering. He’s understanding a game.  He’s developed an understanding (and enjoyment) for interacting with others! As soon as I got him out of the crib and he joined his big brother in the living room, he grabbed his brother by both hands and started pulling him in circles saying, “Ashes, ashes, ashes, fall down!” WOW. He initiated a game with his brother. Amazing! This is definately a new thing. And of course, big brother was delighted to fill in the rest and round and round they went, “Ring around the rosie…”  This mama’s heart is overflowing with joy.

A Brave New World. Last weekend we went to the tractor supply store looking for stock tanks for the aquaponics system we are building (more about that in the future). Now, we’ve been taking him to stores for a good part of his life. But this time, it was totally different. There was an entirely new world just waiting to be discovered! This kid went crazy (well not literally), but his eyes took everything in, wide with wonder and excitement. His feet ran all over, climbed on things, crawled inside things, wanted to go in 5 directions all at once. There simply was not enough time to discover all the incredible things there were to discover in a hardware store!

Three months ago, the trip would have insited dull lifeless eyes, unless he saw anything round then he would have repeatedly said, “ball, ball, ball’ and if he didn’t immediately get the ball (which he rarely ever did) would have been followed with tears and angst. He would have had to be carried the entire time in the store, as he would not have wanted to walk or to be that seperate from me – even so distant as holding my hand would have been too far.  The time limit on the trip inside the store would have been about 7-10 minutes before complete and utter misery would have set in, and with it squirming, fussing, flailing, and all-out meltdown, effectively ending the trip. But not this day. This day, the hardware store may as well have been DisneyWorld! My son has woken up. He is not just functioning, he is participating. He understands there is a world around him and desires to observe and take part in it, discover it, have an adventure. The fear has been forgotten, the world awaits!

A Great Debt of Thanks. I must extend a great huge “Thank You” to Dr. Rosenthal, and those words just don’t cover it. He has unlocked my hidden little boy. Two months ago when we walked into Dr. R’s office Jordan was sullen, unhappy, fearful, full of pain, unsure of everything in this world; screaming was his means of communication – and I’m not just talking volume, I’m talking content as well. He would scream and it was my job to figure out what was wrong or what he wanted. My little boy was trapped behind a wall of pain and unable to comprehend the world around him or interact with it.  Dr. R has unlocked him and set him free. He is smiling, curious, joyful, is so incredibly sweet, talking, laughing, communicating his emotions and desires, and is running to meet life and the adventures it holds! Dr. R, thank you for introducing me to this incredible little boy, giving me the opportunity to truly meet him, my son.

He is absolutely blossoming. Praise God!  Thank you, Dr. R!  Thank you, prayer warriors!

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hay-bales2Wow, where do I start? The last year and a half has been the most difficult of my life. It all started when Jordan was just 3 weeks old. He started screaming for hours on end, projectile vomiting, got a rash, had a little eczema, raspy breathing, anal fissures, and green poop.  I called the doctor and received no help. It took one week before we figured out I needed to stop eating dairy. (He was nursing). The day I took dairy out of my diet, he stopped screaming. Several days later I substituted soy milk, the screaming came back. So, I took out soy. This process continued for 8 months, by then I had to remove ALL dairy, soy (including soybean oil), all beans, peanuts, oats, and beef from my diet . Then, he stopped spitting up. 🙂 By then his other symptoms had cleared as well. During this time we saw 3 different doctors, none of them were able to help at all. When he was 4 or 5 weeks old, I had begun asking the question, “What caused this?” Where did these allergies come from?  And, I started researching. I read everything I could about allergies and their causes.

  

When he was 10 or 11 months old, we started trying to feed him some foods directly. He reacted to everything except sweet potato, pears (later to discover it was causing his horrible constipation), and animal crackers.  Behavioral issues (or more subtle reactions) started coming out too: tantruming – a lot; disturbed sleep, and  fussing and crying constantly unless he was held – I developed great bicepts. 🙂  The doctors still couldn’t help. I was still researching and found some alternative medicine treatments that held some possiblities.

 

 Jordan turned 13 months old and we embarked on trying acupressure treatments called NAET and BioSET. He had 5 months of allergy treatment through an acupunturist which has allowed him to eat fruits, vegetables, rice, beans, and some other things. And, it broke the cycle of him developing an allergy to everything he ate.  However, there is still a lot he cannot eat. His allergies also caused some Autistic-like or PDD (Pervasive Developmental Disorder) symptoms of speech delay, behavioral, and physical issues. But, I was still researching.

  

He is now 21 months old. We have finally found a doctor who understands allergies, the underlying physiology and causes, how it relates to behavioral and developmental stuff, AND how to treat it!!! Wahoo!!! We can officially say that Jordan has a leaky gut (holes throughout his intestines); Candida overgrowth (a fungal infection); toxins in his blood, and his immune system is messed up and operating incorrectly.  We are awaiting more tests to come back in January to see what shows up on those, but already know the treatment plan will take 3 years.  This doctor sent us to a cranial sacral specialist who also found that the bones in his head are overlapping, one side of his skull is more forward and larger than the other side, and the valves on either side of his large intestine are not working very well. The treatment for these additional things is only 2-3 months!

 

Prayer. One huge answer/praise is that I’ve been chasing this problem and trying to figure it out for 20 months.  Every spare minute I’ve been researching and finally figured it out a couple of months ago, and found a doctor who can help him!!! So, praise, we have answers and I have help – that’s HUGE!!!

Prayer #1 – the treatment to be effective

Prayer #2 – the treatment program has strict dietary requirements (many of them we were already doing). I’m going to need energy, patience, endurance, etc. and that’s once I figure out how to cook differently and where to get ingredients we’ll need.  We are now gluten, casein, yeast, and egg free – among other things.

Prayer #3 – the down side to all this – these doc’s aren’t covered by our insurance. So that’s prayer #3 – paying for his treatment.

 

Thanks for caring, reading all this, and praying! I’d love to hear from you, Sarah

  

 Update – 23 months old (Feb 24, 2009)

Wow! The last 2 1/2 months have been absolutely amazing! The final test is in – Jordan has heavy metal toxicity as well. Now the amazing and exciting part – check out the post on February 20, 2009!

 

 

 

 

 

 

 

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